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Celebrating my inspirational wife on International Womens Day #IWD2023

Why my wife should be celebrated on IWD2023

In early 2016, after a period of progressively worse stomach pains, my wife was diagnosed with cancer in the peritoneum, mesothelioma to be precise. This is extremely rare, and unfortunately incurable. That year she underwent 6 gruelling rounds of chemotherapy, which managed to shrink the tumours enough for her to have a 10 hour operation in May 2017. During this the surgeons removed many major organs, before leaving her in an induced coma for a week, and then ICU for a further couple of weeks. All while our children were still in school (our daughter was 11, our son 6).

Thankfully she made a full recovery (or as much as it can be), and we managed to enjoy some family time, all the while hoping that advancement would be made towards a cure.

Unfortunately the tumours came back much faster than had been hoped, and in 2018, she started immunotherapy, which would be less aggressive than chemo. Where chemo destroys everything, immunotherapy uses your bodies own defences to fight the cancer. However, after 5 rounds, her body decided it didn’t like this, and effectively shut everything down, from initially her lungs, and soon everything else. I can still picture sitting by her seat in the hospital after 6 hours of waiting and encouraging her to breath as the doctor told her they were going to put her in a coma to save her life. That wasnt the first, and certainly not the last time I cried whilst driving home to the children.

This time for three weeks, they kept her alive, pumping all sorts into her body to stop its own urges, before being able to bring her gradually back to consciousness. But this story has to have a twist, and in that instance it was a stroke that has caused the loss of eyesight on the left hand side, along with an extreme loss strength and mental ability.

Recovery from that event has been long and frustrating, but we have managed to keep going. In 2021 she had more chemo, and in 2022 she had radiotherapy, all designed to try and shrink the tumours, that have now started to spread to the liver and pelvis.

This year, 2023, we received the news that the cancer has spread further and there are more tumours on the liver, and bones. She has times when she is extremely frail, has lost alot of weight, and can struggle with many physical aspects of life.

She has lost a high flying corporate career, made redundant after a year of treatment, and now has no prospects for work in the future, due to her lack of adequate sight, strength, and likeliehood of needing further treatment.

But through all this, through all the knockbacks and long bouts of ill health, she has kept her capacity to help others, put people ahead of herself. She has never complained, and has taken all the hits on the chin, trying to keep a positive mental attitude to keep fighting.

She has helped our young children navigate through pivotal times in their lives, as my 17 year old daughter has become a young woman, and our 11 year old son has grown up with barely knowing anything but a sick mother.

She has tried to make our lives exciting and enriched, even when she cannot eat she will cook meals, and even when she has to sleep she has made other people comfy and happy first. She will always give to others ahead of herself, and has a selfless attitude, despite having the right to be totally selfish after what has happened. She isnt bitter despite what she has lost, and is still losing.

In a world where extremely mediocre people can rise to positions of power and influence, I think my wife should be seen as a beacon of what a woman should be, and as such I celebrate her on today, International Womens Day.

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Useful links and advice to help a carer of a terminal cancer sufferer

I wanted to compile a list of resources for those who are going through similar to my family. This will be an evergreen list of useful links, tips and so on. I will update regularly as I find new things to share.

Diagnosis and understanding

Obviously, you should go to your doctor for any diagnosis, but to help with the understanding, because the words and explanations can be very scary, these links to medical sources may help.

NHS – https://www.nhs.uk/conditions/cancer/

The UK health service, and their website has an amazing array of information. This link talks about the main types of cancer, spotting cancer early, and ways to reduce risks, along with types of treatment. A good general guide for those embarking on the journey.

National Cancer Institute (America) – https://www.cancer.gov/

A US based website, again some great resources, and a section on how cancer is diagnosed. Again, useful to help understand what is being said in the early days following a diagnosis.

Cancer Caregiver Resources

Cancer.org Cancer Caregiver Resource guide – https://www.cancer.org/treatment/caregivers/caregiver-resource-guide.html#:~:text=might%20be%20offered.-,Call%20the%20American%20Cancer%20Society%20at%201%2D800%2D227%2D,respite%20services%20in%20your%20area.&text=Caregivers%20have%20been%20shown%20to,need%20and%20ask%20for%20help.

A great website, with a pdf you can download. Talks through what a caregiver is, what they do, even what if you dont want to be a caregiver. Also tips on looking after children and handling work situations. A good one stop guide.

Charities

Cancer Research UK

This charity does alot of good in the UK, and have a great amount of resources again on their website. In particular I like this page on caregivers, giving advice (look after yourself), and practical tips. The link to the caregiver page is https://www.cancerresearchuk.org/about-cancer/coping/family-friends-caregivers but explore the website more. And donate to their charity, in the UK you can gift aid your donations, so they get the tax back.

Macmillan cancer support – https://www.macmillan.org.uk/

Not gonna lie, these guys are the dogs. They support so many people and give out some great guidance. They organise charitable events to raise money, but also can give comfort to the dying, their carers and anyone with concerns.

Mental Health

Keeping on top of your mental health is vitally important, and the below groups can give support and guidance.

Mind is a UK charitable group, who promote some really useful information. Highly recommend investigating their page and getting advice if like me you are not coping. https://www.mind.org.uk/

Blogs and other

Cancer Care Parcel – https://cancercareparcel.com/

These guys sell a variety of gifts and living with resources for someone with cancer, but also have some excellent resources on their website. You can find a list of tips for when a loved one has cancer, tips on dealing with side effects, and much more.

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Being a carer can be a lonely path

Being a carer can be a lonely path at times. Friends and family don’t always know or realise the full extent of what is going on. Frequently people are shocked by the constant concern and issues faced in my household.

Of course, when a major event happens, like a hospitalisation, then people come around. Otherwise it rightly isn’t the forefront of people lives. After all, we are the main character in our own films right? Other characters dip in and out.

So the jobs that take up a carers time, and the mental aspects of coping with a terminally ill patient, won’t be considered by people. This is the lonely aspect. It can feel like you are ploughing a furrow that no one else is aware of.

I used to really love Friday evenings. I’d leave work, and that was it for the week. Bliss. However now, I leave work and my second job starts. Picking up the pieces at home after my wife has collapsed exhausted at the end of the day. Looking after the children, and ensuring they get to whatever club or commitment they need to at the right time. The stress of worrying over her health that day.

I saw a great picture the other day (below), and it is so right. When people ask us how we are, the default answer can be to say I’m fine. But is that really the case? We should be prepared to ask for help. It may surprise you that most people will be more than willing! It is hard, but the relief when offered some assistance can be rejuvenating.

There is no need to be a martyr as a carer. After the patient, the most important person to look after should be yourself. You will help no one by being burnt out and getting ill. I will admit I don’t always do this. I am a typical man, and will soldier on and try to do everything by myself, when in reality I am just spreading myself so thin that nothing gets done properly. I think that may be a resolution for me this year – to accept help and ask for assistance.

I will also say something about lonely versus alone. As an introvert, being alone can bring me great relief and help me to power up. This isn’t being lonely, but having time on my own. There is a major difference between wanting solitude and having solitude thrust upon you.

Finally the first lines of the following came to mind while writing. Enjoy!

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10 tough learnings with a terminally ill spouse

I thought I would put down some things I have learned from our lives so far post diagnosis. Hopefully someone may be able to see and have an understanding of what may come for them. Living with a cancer patient can be tough.

I thought I would put down some things I have learned from our lives so far post diagnosis. Hopefully someone may be able to see and have an understanding of what may come for them. Living with a cancer patient can be tough.

  1. The initial diagnosis is scary. Like, sweat forming on your back, take back those words scary. When my wife was initially diagnosed, we were in a small meeting room at the hospital, and there were many more nurses in the room than previously. I quickly learned why. There is so much to take in, and so many negative thoughts and associations with the C word. You will be confused, you wont know what is going on, and to be honest once they have said cancer, you dont listen any more. Not consciously anyway.
  2. The next few days are a blur. As I said, there are many negative thoughts. I straight away thought it was an immediate death sentence. The information you get given is confusing. We didnt even meet the final consultant until a while after the diagnosis. You have to tell people, and arrange things with work while trying to stay calm. The day after my wifes diagnosis, I was offered a promotion in work by one senior manager, having just gone to tell my boss I would need some time to help my wife. Talk about a sliding doors moment.
  3. Any time line given by the doctors will be a worst case scenario, as is alot of information about side effects. They have to tell you the worst so you dont sue and get pissed off. That way when things turn out better, you are happy. Sort of. We had a 12 month prognosis nearly six years ago, so now feel we have been given extra time. We have also had meetings where we have been told to get things in order, but again still here.
  4. Meetings with the doctors are confusing. You get given so much info that you dont know what is important and what isnt. You need to write down so much (words that have strange spellings a speciality), and determine what tells you something useful. You need to write down what tablets are needed and when, as that information isnt given to you.
  5. Which brings me on to lists. Why dont the hospitals give you a checklist for tablets – we have had to write out so many ourselves, and are never quite sure if it right. But you will need to write out lots of lists. And they change when treatment is ongoing, and if you are lucky and have a few different specialists, no one doctor will. There are loads of checklists you need
  6. The impact of treatment isnt just the chemo side effects. Mental associations play a massive part as well. Food when eaten during the time in the chair can cause sickness, sometimes even the sight of the food stuff can trigger that. Dont wear aftershave or perfume – my wife has mental associations with smells from the routine of going in. We had a set of hospital clothes that had to be washed and hidden away after visiting the hospital. The mental association can be dehabilitating.
  7. And physically the treatment is harsh. My wife lost serious weight, and her arms looked like twigs. Finding food to bulk her up when she was feeling sick was tricky. Doctors recommend protein drinks and so on, but she wasnt having that. Eventually anything we could find out of desperation – pancakes, Angel Delight. It was harder as she is vegetarian.
  8. Mentally treatment and hospital trips can play on you the caregiver. Just the worry while waiting. Not being able to help, apart from drive or collect drinks. I felt useless alot. That was and is a horrible feeling. And the hospitals are horrible places by and large. Not the people working there – they are the most amazing people on the planet. But the structures are grey, and ageing, with rickety chairs and expensive parking and food. One we visited at one time had high windows to the room, and felt like a Victorian jail. It is so depressing, on top of the reason for being there.
  9. Be prepared for every conversation with friends to be about your partners illness. We are defined now by cancer. They are keen to help, but sometimes the help you need is not to mention the illness. Treat you as you were before. Buy me a beer and tell me about the latest record you are obsessed with.
  10. On the other hand, do accept offers of help. I try to keep everything going myself, but offers of lifts, offers of meals, anything like that will be a big relief. I didnt realise for a long time how much pressure was building on me as a caregiver, trying to do everything, and sometimes someone dropping over a ready made home cooked meal would save my day. I have said that I felt useless – well people one step detached feel even more so.

Initial 10 things I have learnt. Today I am concerned about my wife more than ever. She is struggling to eat a great deal, and getting very tired, looking grey and weak. I have mentioned before that she had a tumour on her liver, and I fear this has grown. She isnt telling me everything, and says she is fine, and I am not sure if that is to not admit to me or herself. We have the scan results this week, and hopefully will get some idea of what is going on.

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The symptoms of metastases Liver Cancer to look out for

The symptoms of liver cancer metastases to look out for

I havent been here for a while. To be honest, you can probably measure my mental health by the number of posts. When I feel better I dont write so much, and vice versa. Guess I am now heading into a bad time.

This week is scan week, and I am again going in worried. The last few times, and the prompt for my wifes radiotherapy earlier this year, was the sight of tumours on the liver. These were slowed in growth, but did increase in number at the last MRI.

I have seen my wifes situation deteriorate a bit though. Maybe even a lot. She gets tired easily, like really tired, even from just doing some cleaning around the house. She cant walk too far without looking really pained. She gets nauseous around food at times, and cant eat much. Her skin feels itchy. Finally she has had a pain on her side, which she wont say how bad it is, but I have seen her wince.

So of course I googled. I know I shouldnt do it, but I am desperate at time to know where all this is going to go, and need the info. On the American Cancer society website (so I guess a fairly reputable source) they list the following as symptoms of liver metastases:

  • Loss of appetite
  • Feeling tired or weak
  • Fever
  • Itchy skin
  • Yellowing of the whites of the eyes or skin (jaundice)
  • Bloated belly
  • Leg swelling
  • Pain in the upper right part of the abdomen (belly) (less common)

These all seem similar to what I am seeing. I know from the last scans that this is probably the case, and so now the question will be is it significant enough for the specialist to say they need to do something. We hope not before Christmas, however Id hate to miss some vital sign and not act quick enough. We have done that before.

This all adds to the uncertainty we are dealing with. The worry that the disease may come back is always in our minds, and as seen above the list of potential symptoms are long and scarily mundane at first. It is easy to dismiss it as fighting off a cold, or a stomach bug the kids have picked up in school.

I keep my fingers crossed, but the signs are not great.

The link to the page I mentioned above is as follows. It is worth reading if you are worried. And as always click the link to buy me a coffee or something stronger if you feel inclined

https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/liver-metastases.html

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Update 11th Oct and a plea

The vitamin B12 injection does not appear to have had an immediate impact. Maybe I foolishly thought it would alter her straight away. However, she still has pain and still is very tired.

Today was a day when she did walk into the village, and then meet with a friend, so we should be happy for small things like that. She is very frustrated and stressed though. Constant pain must be so debilitating. Even from my small experience I know that having a bad back for a few days can take it out of you, so goodness knows what her days are like.

She has got into meditation and today being a full moon meant that she had to do certain things. Hopefully they will have an effect.

This however was probably taken away by the washing machine giving up. It was on the blink at the weekend, and the part I ordered and fitted didnt do the job this evening. I spent all night with the guts of the machine open, and fitted the drainage pump correctly, but there was a problem elsewhere. The water would go into the machine, but not into the drum, which doesnt help when trying to wash clothes.

And this is where the titular plea comes in. If anyone is feeling generous, and would like to help a terminally ill woman out, please click on the buymeacoffee link which should come up as a cup icon, or try the following:

https://www.buymeacoffee.com/fletcherduU

Any small donation would be gratefully received. I will keep you all informed of how we are getting on.

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Weekend Worries

After the mixed results last week following the scans, we settled in for the weekend. My wife had managed a fair amount of things during the week, and we then went out for dinner on Friday to meet some friends. That was very pleasant, and great to catch up.

Saturday was a morning of watching our son play school sports, before my wife was picked up by another friend to meet with the girls. She couldn’t eat a great deal though, the result of the tumours restricting the expansion of her stomach. The way this symptom was described to me was to imagine your stomach is like an inflatable water bottle. When you fill them up, they will expand to allow the liquid in. However, in her case, the expanding bottle has a hard case surrounding it, and this stops the bottle from reaching the full potential. Little and often is the only option. Couple this with her lack of ability to digest certain foods, and some restaurants can be out of the question. Anything spicy doesnt work.

The upshot of all these activities was that she was asleep by early evening on Sat, and then spent most of Sunday in or on the bed. She didn’t even get dressed. Partly due to a pain in the leg (some form of cramp we hope), but mainly the sheer exhaustion. I have discussed this on previous blogs. It can be amazing how the normal exertion we do can wear her out. The seemingly shortest walk or cooking a meal will have her done in.

This morning though was a scheduled trip to the doctors for a vitamin B12 injection, which hopefully will help combat this. Being low on B12 can lead to tiredness, and unfortunately her being vegetarian as well means that she doesnt always get the right amount. I understand cancer doesnt necessarily lead to a deficiency, but when taken in tandem they can be have an impact.

I have put a link here to a good article about the links between cancer and B12, and the importance of it:

https://seormc.org/the-importance-of-b-12-for-cancer-patients/

So far though, no noticable effect. Dont you wish that some medicine had a quicker positive impact sometimes? I do miss the days in our house when you fixed a headache with a tablet, or a stomach ache could be slept away. Now we have to deal with degrees of illness. Is the stomach ache worse or better than before? Is that pain in your leg caused by sitting in a car for a long time, or is there something more sinister?

Other concerns I have are my sons mental health. He is happy in his new school, though misses friends from his old one, but does seem to sit doom scrolling on his phone, waiting for messages from the watsapp group. He picks up on things easily, and so his mum sleeping a great deal makes him feel down, and tired. He has slept in our bed with her for a couple of weeks. It makes him happy, and he doesnt disturb her in her sleep like I do apparently!

My mental health is still hovering around the lower levels. I suspect that wont change for a long time. I am starting to use some coping strategies, and am planning on detailing a few in the coming weeks. My wife has got full into yoga and healing crystals, but I havent yet resorted to them!

Whilst the results did show a small deterioration last week, and the specialist said no need right now for treatment, I do have concerns over her health. There seem to be many more small niggles, aches and pains. I wonder at times if she is keeping things from us. I know she doesnt want any more treatment this side of Christmas, but not being in the meeting with her specialist, I only have her word for how sensible that is. On the other though, the treatment was hellish, so I fully understand her position.

Ultimately she is sat between a rock and a hard place. Her life right now is very restricted and frustrating. Her ability to do the things she used to gets less and less every week. But again, the other option is horrendous as well. Hobsons choice I believe is the saying.

As ever, please follow my blog. Seeing readers does help keep my spirits up. I do this anonymously as I dont like attention, but I am real, and use this as an outlet for my thoughts, both factual and then deeper depressing ones! At this point I feel we are in a deep hole, and the escape ladder is being pulled away from us. I’m not sure how we are going to get out at this stage, so having the ability to write down what is happening helps.

And if you feel you have gained something, please click the link for my BuyMeACoffee site – I am running pretty much on caffeine and gin these days, so have a habit to maintain.

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Results day

First things first, we got the latest results. It felt like deja vu. The disease is getting slowly worse. Some improvement in some areas, but new nodules in others. Some markers up, some down.

We dont quite know what to think. Is it good news, or bad? The specialist almost casually references concerns around the pelvis, like this is something we have seen before, then swiftly moves on. We are sure it is something we havent heard about before.

So bittersweet. I have said before that this feels like slow torture, a drip drip on the head. It doesnt seem to have an end in sight.

My wife thinks that the mental healing she does has had an effect. I am practical and logical, so am not so sure. I do feel that whatever makes her happy is good though.

How do I feel? Is it bad to be almost disappointed? I want to have some form of conclusion. The whole thing has been going for too long, and we are all held back. However I know that that means the unthinkable. So I can either suck up the crap and keep going, or be a total dick and hope for the end. Talk about caught between a rock and a hard place.

And yes, I know that that last paragraph makes me sound like a self absorbed arse, uncaring and a dickhead basically. And you know what, that is true at times. But I would challenge anyone to experience this and not have dark thoughts at some point. They would have to be a saint not to.

People with cancer are the main focus, and rightly so. They have everything to lose, and have to put up with immeasurable pain and suffering. However, please remember the carers out there as well. They do an amazing job looking after their loved ones, spouses, children, often without thanks. They can be seen by the patient as lucky, nothing is wrong with them is there? But the mental impact of looking after someone you love, seeing them deteriorate and lose what once made you love them, leaves deep phsychological scars. They will be the ones to both care for a dying partner, and then straight away pick up the pieces in the follow on world. They do a job of caring, whilst at the same time often having to plan for what they will do when their patient has gone. And most times, the one person they would usually be planning with is lying in pain on the bed next to them, the last person who you can talk to about those kind of things.

It is a thankless task that is thrust upon many people around the globe. And I will admit it does get me down alot, and the tone of this blog is driven by that this week. I feel guilty for being down about the results, I feel unsure of where we go next, and I feel that we are trapped by this disease, all of us unable to move forwards, however hard we try.

So the black dog is sitting on my shoulder, just at the one time when I need to be upbeat. We dont choose our lives, they are chosen for us. My depression will pass, I know that. I just have to push myself on and find joy in the world and my family.

Stay safe, and keep on keeping on.

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Waiting for the results

After the scan last week, I have been watching my wife more closely. I also made the error of seeing what the symptoms of liver cancer are. I have seen her deteriorating (at least in my view). She doesnt have the same energy, or strength as previously.

She was first diagnosed with peritoneal mesothelioma, but we know that it can spread, and at the last meeting were told that there were tumours on her liver. The distinction was important, on not in.

From looking at the NHS website, liver cancer symptoms can include the following:

–       Skin or whites of eyes turn yellow, you may have itchy skin

–       Loss of appetite, or losing weight without trying to

–       Feeling tired or having no energy

–       Feeling generally unwell, or having flu like symptoms

–       A lump on the right side of your tummy

Other symptoms can affect your digestion, such as

–       Feeling or being sick

–       Pain at right side of tummy or right shoulder

–       Symptoms of indigestion

–       A swollen tummy not related to when you eat

I can be the sort of person who when I read of an illness, feel I have some symptoms (emails from school about headlice will always get me scratching!), but I noticed some of these in her before reading up. It is hard to know for sure, as in her case, any disease on the liver would be a metastasis from elsewhere, not originating there, so the symptoms may be different.

But from that list, she ticks alot of boxes. She is very tired, and will be in bed by just after 8, even when not doing a great deal all day. She will say she has had a busy time, but it is not on the levels she used to do. There is not a lot of walking for long distances right now. A short coffee with a friend will rule her out for the rest of the day. She has a real loss of energy, that is very noticeable.

She also has a loss of appetite, and doesn’t eat as much as before. She still eats a small amount, and even then the type of food can be problematic. She also can’t really be in the same room as the rest of us when eating, as the smell and sight can make her nauseous. . And without using scales I would say a reasonable amount of weight loss has happened recently. I can’t always tell if she is sick or feeling sick, as that can be a default position for her unfortunately.

Her tummy has been swollen for a long time, but I think it is getting bigger. Again it is hard to tell without seeing the scans, but when you live with a person you know generally how they look when they are well, and what their normal size is. And you know when they don’t look well, and when they are losing weight or swelling in areas.

She also has a general look that doesn’t look well. Not jaundiced, but not rosy cheeked. I think most people currently don’t appear well – tis the time of the year – however I feel she is looking a bit worse than normal. A washed out, grey tinge to her, and while we try to get out with her fatigue, we don’t get far.

I realise I sound like a pessimist, and that can be true. Things are pretty rubbish here, she isnt well, money is over tight (quick plug for my buy me a coffee link below if you feel a drink would help me relax), and we are entering the colder part of the year, when lots of illnesses are around. However I am not feeling great about the scan results this week.

Hopefully we wont see a bad result, and wont have a regression of her good health too much. The radiotherapy earlier this year may still be working its magic. I hope so.

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Queen Elizabeth II

Living in the UK has been strange over the last 10 days or so. I was in work when we started to get news around the Queen being ill, and it seemed to get steadily more serious as the time wore on. I was then at football training in the evening when I turned on the radio and heard the sad announcement.

My whole life, the Queen was a constant presence, always there. Seeing her on the money and stamps everyday. She visited at Christmas every year, and growing up we would sit down and watch her speech after lunch. She was like the relative you invited who came and no one fought with. So the reaction for me was not pain, but a strange feeling like a void. A big hole in the country.

The country had a long period of mourning, and the protocol surrounding it I found very intriguing. There were set number of days, certain events that had to happen at certain times. It was fascinating to think that we were witnessing something that has been repeated over centuries, and seeing it much better than any other generation had ever done.

I didnt go to join the queue. We did consider it, but one big factor, aside from the commitments for the children at weekends, was the length of time, and the impact on my wife. She is disabled, and so would not be able to manage the endurance. I did hear about the accessibility queue late in the day, but we had already decided not to go.

We did watch the funeral itself. Again, this was a ceremony that has been seen for centuries, and I really felt like the weight of history played a big part. I felt for the family, so obviously in need of a personal moment after all that time being part of a machine, but having to observe protocol again. It must have been so tough.

And we are now in the reign of King Charles III. He has changed during the mourning period, and I think has a kingly look about him, which was a big surprise. He has waited so long, but does look the part now.

As I said, strange times. Surreal in many ways, but amazing to live through history on a day to day basis.

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Extreme fatigue

I want to talk a little about extreme fatigue. Not mine, although I am knackered all the time, but my wife. Frequently she has times now whereby the smallest thing can cause her to collapse totally exhausted by the early evening. For someone who used to be very active, working long days as well as bringing up a family, this is frustrating.

This is not just during the times when she is having treatment. Those special periods have their own level of impact. Six hours of drugs being pumped into your body causes many extreme reactions. No, even outside of these times she is constantly shattered. Walk to school (approx a mile)? That will be it for the rest of the day, clean the kitchen and make dinner? Bed by 8pm for you. Every day is the same.

When it a minor achievement to be up at 9pm, you know that something is wrong. Her body is working so hard against the cancer cells that it cannot support the other functions. I have never seen someone so consistently be properly exhausted every day.

The children now see it as normal. Oh mummy is asleep on the sofa again. However I find myself frustrated with this, as it shouldn’t be normal. They should have a mother who can help them get ready in the evening, not a mother who snores over the TV. It isn’t fair on them.

I have said before I am not a doctor, but aside from the destruction caused by the cancer tumours, I feel it is this tiredness that kills people. There is no way that someone can keep fighting that way non stop, and eventually their body will give up. It won’t have any energy left to keep on doing what it needs to do.

Another symptom of the slow destruction that cancer causes unfortunately.

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Keeping track

One thing that you dont really get told when sitting in a cancer diagnosis is all the admin work that will need to be done. And there is alot of organisation that is needed. I think we are lucky in that we are both able to keep track, but the things that need remembering must be overwhelming for many people. I would worry were an elderly relative of mine having to be on top of all the items we have to do.

First up is the many tablets that are taken each day. We now have a daily ticklist, as there are currently 8 different tablets required throughout the day. This then increases during the time of any treatment, and that can get very confusing as there are additional tablets for a few days, then going down after 24 hours, while the normal tablets are sometimes dropped, sometimes not depending on the treatment drug. And this change takes place during a period of very high stress, so it can be hard to recall what needs to be done. Particularly as the hospital dont give out a day by day list, but verbal instructions that we need to make sure we catch adequately. In that moment of pain and confusion, it can be an awful lot to take in.

Next to manage are all the appointments. A regular scan and check up with the specialist will entail seperate appointments with different departments, all needing to be coordinated to ensure there is enough time between the bloods and the MRI to get across the building. If treatment is happening, then that entails more pre-scans, followed by bloods, and insertion of the tube for the drip, followed by the actual day in the chair. There is help of course, but you need to know when to be where, and sometimes an appointment will get missed by the nurse team (no fault given), and you have to be on top of picking up that.

Luckily we have private health care, so all the appointments and drugs and treatment have been covered, but yet again, we need to be on top of the authorisations, making sure they are ready before the appointment. And they dont always authorise everything you need straight away, some times you have a scan, then go back to approve a follow up. A new consultant or drug will need some extra paperwork, especially if it is a little out of the ordinary, or is something new.

Then we have all the other little appointments that you need to make. Reflexology to try and keep calm, haircuts to make yourself feel good, someone to pick up the children if you are running late at an appointment (because hospital appointments never run on time of god forbid early!). Then there are all the school things that need recalling, making sure they have the right bag and clothes for the day, making sure we know when to collect them, making sure we have planned for dinner. These are the usual tasks in any household, but with an impaired brain they can take much longer, and need real thought.

This does sound a little like moaning, but this is a realistic list of things that need to be addressed on a regular if not daily basis. When coupled with the worry and concern of the disease as well, it can be a miracle that the children are fed and wearing the right clothes for the day. I think as a household we now exist on a higher level of stress, held together by coffee and gin, with just the love of our family keeping us sane.

It can almost be counter productive when a relative offers to come and stay to help. They dont always know the routine, and just small things being out of place can cause my wife to get frustrated. The right tablets are needed at the right times, and the list needs to be ticked to ensure we know they have been taken. It is a fine balance to keep her alive. Everything needs to be planned to ensure her logical brain can cope with the information it gets, a change can send her in a spin.

That is a snap shot of the issues that are dealt with here. I am sure that many people experience much worse, and I have full sympathy and empathy with their struggles. Sometimes it helps to know that others have a similar battle, and that you are not just battling with these things in isolation. I know it has sometimes helped to chat with a friend in the similar situation to me, as friends who arnt in that situation maybe dont fully grasp the implications.

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Fears for the future

I have a few fears for the future, aside from the obvious one. I am fully aware that we will lose my wife at some point. There have been times when I thought that time had come and we have got past it, but realistically it will happen.

The first worry I have is how I will tell the children. They are currently 11 and 17, and have lived with this for over 6 years, but when it does happen, I have no idea how I will tell them. I have no concept of how to start that conversation, or how to comfort them. And that isnt because we are not a loving family, but because I have never had any experience of that level of magnitude. We have dealt with alot over the years, and have come through, but even with the major experience advantage I have over many dads, I still dont know how I will manage at that time. I’m not ashamed to admit I have had nervous breakdowns trying to imagine it (usually after a few beers to be fair). I always feel my main role in life is to try and protect my family from things, and this disease has shown that that is not possible. I cant shield them or my wife from this horror.

The next fear is for my wife. I have been there when she has been told she will be put into a coma, and have seen the fear in her eyes behind an oxygen mask. I have seen her lying in that coma, and others way too often. I cant even imagine what goes on in her head, and how she copes after all of this. How can she keep going, and look after us all, when her brain has been effectively rewired by a stroke, and her body literally cut open and changed by surgeons, and cells destroyed by drugs and radiation and nuclear isotopes. After all those horrendous and scary and disabling experiences can a person even get out of bed in the morning? I know they say that after a near death experience people have a renewed vigour, but I’m not going to lie – that would need a hell of alot of vigour to get over. I struggle after a heavy night on the ale.

I also worry for the rest of the family. My mother in law has devoted so much to the care of my wife over the years, and I dont know how she will cope. Other immediate relatives are close and the fabric of our whole family will be ripped apart. Friends also will be lost to us I’m sure – I’m useless at keeping in touch with people.

My final worry is for me. I’m now 47, and have now been a carer for 6 years. I have friends, and a job, and the children to look after and worry about, but I also need companionship. While my wife has been ill, our marriage has evolved and whilst it is still loving, we dont have the sort of relationship other people may have. We dont do date nights – my wife would probably fall asleep early, and she cant eat a wide variety of food, or drink alcohol. She is in pain quite alot, an ongoing back problem adding to the other concerns, and so a physical relationship is out of the question. All this means that in a selfish way I feel I am missing out on a fair amount of living, but also do not know how I will ever get that back in the future. The things loving couples do together are now realistically gone from our marriage. I dont think we will ever have them back in our lives, and I also dont know if I will ever find that again in the future. The disease has robbed me of most of my life, and left the identity of the man with the sick wife, the family always seen with concern, the first question always how is she?

Starting out in life, as a young couple you have hopes and dreams, and build a life together to try and achieve that. Cancer has come along into our lives, and taken that away from us, and despite amazing medical science extending the time we have together, there is always the knowledge in our minds that it could change at any second – a cough may be something more nefarious, a routine scan could show a spread of disease, and in seconds things could change again. This is my final fear, that just when things feel they are going well, we find out that no, they are not, and the reality will suddenly drop again, and we will be cast back to hospital rooms, and operations and horrible treatment. There is a feeling of waiting for the inevitable to happen, and it is the anticipation that hurts so much for the rest of us.

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Cancer and the slow decline

Today I want to talk a little about what I find one of the hardest issues we face with my wife. She is currently in a cycle of not having treatment, which is great, as she can work on getting over her last bout of radiotherapy. We have had a summer break, been away, and now the children are back at school. The next scan is in a few weeks.

We do notice that she gets very tired easily though. And this will lead to her falling asleep early, into a dead sleep on the sofa at 8 PM if we have been out somewhere. The knock on to our family life, aside from her snoring over She Hulk, is that she will then awaken at strange times, and start to engage in cleaning or tidying. She always had an almost OCD mindset, but the cancer has made this much worse. Coupled with her lack of sight on her left hand side, we have to ensure things are done as she wants them to be. Which for the sight aspect is fine, but not so easy when it is because she has a whim and wants things done in a particular way. I feel we live on egg shells worried that we have put something away in a cupboard in the wrong place, and that the inevitable fury will reign down. As you can imagine it does not make our home life relaxing at all.

The last lot of scans stilled showed the disease now on the liver, and apparently some in her pelvis. I dont know now how much further this has spread, or how fast it spreads. She has some pain in the stomach area, which is where this journey started all those years ago. I feel that all we do these days is ‘kick the can down the road’ waiting for when we get something that will warrant a round of treatment of some sort.

And this is where the slow decline comes in. As an analogy, you have two options when taking off a plaster – fast or slow. One brings a short, sharp pain, the other a duller slower pain. Neither is easy, but sometimes it is best to get it over quickly. And as you can tell, that is what is happening here. My wifes decline is the slow pull, a gradual decline, and it leaves us with years of pain, never getting ourselves quite back on track. Things will never be the same as they were before her diagnosis, however I do feel we are being held back, the rest of us not able to move on. This sounds callous, and I realise that, but the other point is that my wife is not the same woman she was, she isnt able to do the same things she was before. At some point her quality of life will decline significantly enough that she wont be able to be on her own, and a final indignity will hit.

This slow decline has destroyed my marriage. We dont do any of the things that a normal couple do. No date nights, no physical contact, nothing that a loving couple can do together. Our relationship is as a patient and carer. I feel my life has been put on hold, trapped in a marriage now that is never going to improve. I cant move on with my life.

I dont want to leave my wife behind, I want to have the life we had, but understand that is impossible. But the life of a carer is a hard one – I am the one who takes the blame when something isnt right in the house, I get the brunt when she has been out with her friends and is then tired in the evening. I have to tidy away and look after the children and house after trying to concentrate at work all day. And I do all this because I have a duty. But it would be good to have some time off.

The thing I hate about writing that, is that my wife cant have a day off. And that is where the cruelness of cancer comes in. It is relentless, it doesnt give any respite, and unless you are one of the lucky ones, it will not end in a happy way. My family is trapped at the whim of this diease, waiting for the plaster to finally come off, knowing that only then can we rub the pain better, and move on. Sometimes it feels that we are all just hanging around. It would have been tough, but at least of we had lost her before, we would have been able to deal with the grief, instead of effectively grieving for a years on end.

To end on a different note, I have mentioned previously my love of music, and last night we watched the Taylor Hawkins tribute gig on MTV. I was gutted not to be able to go – I had tickets to see the Foo Fighters earlier this year, but that was cancelled when he died, and my brother in law was at Wembley. However, money worries stopped that for me.

I thought the gig was great – a brilliant tribute to an obviously well loved friend. Some tears, some laughs, and lots of amazing music. Violet Grohl and Shane Hawkins were there to carry on from their parents, and I hope my children honour their mother as well as they honoured their father and friend.

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Holidays with a disabled partner

Once my wife had recovered enough from the radiotherapy, we were able to look at having a break. The recovery did take a long time though. Because of the location of the tumour being zapped (her liver) and its closeness to the other major organs, she did not feel well for a few weeks. Thankfully the sickness passed, but it could still be triggered by anything, the most violent being a crumb on a biscuit with an ice cream getting stuck in her throat, and the body then deciding to reject the rest of the stomach contents. Not great when we were sat outside an Italian restaurant in Paris without any toilets, leading to her having to quickly find a spot away from other diners. The reaction was impossible to predict, and came on so quickly. It was very embarrassing for her, and yet another indignity this disease has thrown her way.

So we did manage to get to Paris, my daughters dream destination, and a few days at EuroDisney. The whole week was exhausting, with alot of walking, at a time when the weather was heating up the ridiculous heatwave we had last week. Somehow (probably through Disney magic) my wife managed to see all the sights she wanted to, and eat all the food she wanted to try. We were lucky in that we had a card to get assistance, which meant that we could avoid queues, and walk straight onto rides and so on. I felt guilty at times, however there was no way that she could have ever stood and waited, she would have collapsed. Growing up, I always thought that disabled people were in a wheel chair, or had a really obvious mental illness, but now realise that isnt the case. It applies to those who have unseen illness, or have a lack of ability to walk unaided, basically those who cannot be on an even playing field with everyone else. My wife cannot do half of what other people can do, but why should she miss out on the fun those people have? And if anyone wants to complain, I have a list of operations and treatments and drugs they take to be on her level.

The pass helped, but it isnt easy having a disabled partner when away. She has a lack of sight on the left side from her stroke, so crowds can be a real problem, which at a theme park is a regular concern. Her hearing can be restricted, particularly in large busy areas, so we always need to aware of the surroundings. She cant carry too much, so my daughter stepped up to carry a bag along with myself. We needed to check where seating was, and always be aware of the nearest rest room, and have a regular drink to hand. Plus she would get tired and then confused, so we had to ensure that we knew when she was able to respond and when she needed to rest. If it sounds alot like having a child, then that is right, but with the added awareness of someone who used to be exceptionally capable, but now isnt, and is frustrated by that.

On a guilty side note, I notice that when we leave her to rest and I take the children out for a while, the pressure seems to lift, and we can have fun without the reality kicking in for a while. There doesnt have to be worry about lots of people being around, or where the toilets are, or holding her hand to guide around places. The three of us can get on with enjoying things together, and while I enjoy that time, I feel very guilty afterwards, realising that she is missing out, but also that this is how things will be in the future.

Right now she is feeling the effects of the week away, as well as the knowledge of what her latest scan showed. The liver tumour has shrunk slightly, but has some smaller friends with it, and there was mention of the pelvic bone showing signs, which was the first time we recalled hearing that, but does make a little sense from the way her hips hurt alot.

Currently her back is bad, which is mainly from the walking around and then sitting in cars for a long time. She is in agony, and it does cause issues for us. I worry that this is a symptom of worse to come – and that we are on the down hill slide.

As a partner, it is tough as well, though not anywhere near the same. There is no break for us as support, every day has some form of concern, or the need for help walking around somewhere. It is a 24/7 job. Colleagues at work will clock off and head home to relax, but I know will head home to pick up where my wife fell asleep, and make sure she is comfortable, with the knowledge that a pain may mean the need to head to A&E.

This is not a post with any answers, but more a post to let people know that if you have a partner like this, you are not alone. There are lots of people in the same position, some worse, some better, but all doing an amazing job looking after those they love. It is tough, but we need to remember to talk to friends, and try to escape the pressure cooker now and then to recharge and be able to face the task we have. From my other posts you will have seen mention of live music, records, running and a few other things I do to stay sane. Sometimes they work, and sometimes they dont. However, it is important for the carers to be healthy, otherwise they arnt caring.

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Primal Scream Cardiff Castle

30 years ago, what had been seen as a wannabe Byrds-esque jangly guitar indie group, worked with cutting edge dance music producers, and released Screamadelica. Somehow that band, Primal Scream, have survived the intervening years, despite loss of band members, and are now celebrating the anniversary of that ground breaking album.

Friday night saw the tour roll in to Cardiff Castle, a great outdoor venue in the centre of the Welsh capital. A crowd full of bucket hats and Adidas trainers, queued around the castle walls to the strains of Faithless being pumped out by Peter Hook of New Order / Joy Division, ahead of the Happy Mondays taking the stage. Shaun Ryder and Bez may be showing their age now, but the tunes still pack a punch, scally dance rock, with the ability to get a party started. Wrote For Luck in particular was immense, a towering groovy classic.

Bobby Gillespie, resplendent in an outfit depicting the famous album cover, and band strolled on stage a little before 8.45, a white clad gospel group joining for the opening bars of Moving On Up, sung a cappella, before the band kicked in, and from that point on, there was barely a let up. It was nice to see little tributes to Denise Johnson and Andrew Weatherall, two people who had as much to do with the genesis of the album as the full band members.

As on the record, the first few tunes (Slip Inside This House, Dont Fight It, Feel It, Come Together) are extremely powerful, but the band then leave out Loaded, playing the title track (though not included on the album) in its place. This was a welcome surprise, and still got a great reception.

I’ve always felt that Screamadelica was front loaded, and that the second half of the record drifted a little, but live this was not evident. The tunes felt beefier somehow, the guitar to the fore, and the gospel choir brought depth to Bobbys sometimes weak vocals. Damaged in particular had a cutting guitar solo, and the final acid house tracks held up well in the open air venue.

The encore started with the aforementioned Loaded, still a dance indie classic, before a short greatest hits of Jailbird, Swastica Eyes, Country Girl and finally Rocks. These had the crowd fully dancing, and showed a different side to the band, their Stones tendencies fully evident.

It was the second time I have seen Primal Scream, the first had been in the early 2000s when they had Kevin Shields and Mani in the band, and were a very powerful MC5 / Stooges heavy rock outfit, but Cardiff Castle had these elements plus a lightness of touch, and showed why they have lasted so long. They may get seen as derivative, but they are soaked in the classics, and know their stuff. Screamadelica is an album I have struggled with as I mentioned, but tonight it worked, and brought a new understanding to it. There is a reason it won so many awards, and is held in such high regard.

Definately a great live act, and an album you should get if you havent already (link below):

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Ziggy Stardust

50 years ago today, the great album Ziggy Stardust and The Spiders from Mars was released, obviously by the much missed, extremely talented David Bowie. I guess that relatively I came late to this album.

I remember growing up hearing Dancing In the Streets for Live Aid, and must have been aware of other big tracks, but mainly knew of Bowie through the sample Carter USM used in Surfin USM from Suffragette City, and then the Bauhaus cover of Ziggy Stardust that I had on a Goth collection, nestled between the Damned with Eloise and probably a random track by Siousxie and the Banshees. So I can easily recall buying the Bowie Singles collection in about 1995, at the height of Britpop, and having a few people moan!

From that point on, I went back and started to collect the albums, starting with Hunky Dory, then on to Ziggy. The combination of Mick Ronson on guitar, and the concept behind the album grabbed me straight away, and it has been a favourite ever since. I may claim to prefer some versions on the Live at the Beeb album, but dont listen to me.

And what is not to love. The record is packed full of hits – the title track, Starman, Hang on to yourself, Rock and Roll Suicide. Of course Starman had been the intro for most of my musical heroes to Bowie, so I heard about the Top of the Pops performance before I had heard the song. I read about the origin story, the days and nights at Haddon Hall, the break up of the band at the Hammersmith gig, even how the Sex Pistols had stolen their gear from back stage that night. I have lapped up every fact about the album and its legacy.

There are guitar freakouts with heavy riffs, la la la choruses (Im a big Julian Cope fan, so love a la la or ba ba chorus), story telling, cover versions, and the ultimate final track.

I really believe that losing Bowie caused something to happen to our world. He died in 2016, and in that year we had the rise of Trump, the Brexit vote in the UK, rise of right wing intolerance, and on a personal note my wife was diagnosed. I can still recall crying to the loss of Bowie, even before all of those things had happened, just being hit by the sense of loss, and the realisation we would never hear of his likes again.

I used to work near Heddon Street where the cover was shot, and made many a pilgrimage to the location, knowing that there was one spot I knew the great man had walked. A restaurant was there in those days, and it felt a very unmarked and unloved location for what I felt was one of the greatest pieces of British history. A little more Bowie would benefit us all

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Protecting children

I’m intrigued how to manage my childrens impact of my wife’s illness. Case in point tonight.

I was upstairs making beds when my ten year old son came to tell me his mother was being sick in the downstairs toilet. She had had half a bowl of food after being out for two hours and her body had gone ‘nope, fuck that’. My 16 year old daughter was sat in the lounge, stressed as she is mid GCSEs, and they both were having to deal with this. And this is on top of 6 years of rinse and repeat treatment and sickness, interspersed with the odd treat. How do you help them keep the mental strength to deal with this?

I struggle at 47, and even though I understand the full horror of her diagnosis, and the kids don’t know how serious it is, they are not stupid. They know. They have seen her in a coma. They have seen her be sick. They have seen her lose weight. They have seen her sleep every evening from 7pm. They have seen her struggle to walk to the end of the road. How do they fucking cope with the daily horror of a terminally I’ll mother.

No child should have to see that. No child should have to live for an extended period of time with that stress.

I try tibshield them, but I can only do so much. At times I wonder if this is like a plaster removal. Is it better to get this over with, or do we hope that slowly means we buy time? Cause right now, buying time just makes her worse and there is no sign of the cavalry coming over the horizon

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The Walking Dead

One of my favourite TV shows is The Walking Dead, along with its spin offs. I have watched religiously since the start, even sticking with it through the long series on a farm, or the rinse and repeat of find a community, destroy them, and move on again from a few series back. It is great now by the way, just as it finishes!

However a major point is that in reality the Walking Dead are not the Zombies, or walkers or whatever they may get called, but that the real walking dead are the survivors, our plucky group of men and women, battling to survive this harsh new world. So why are they the walking dead? My thoughts are that it is because they know their fate. It is all around them, they can see the inevitable, and so are just waiting for it to happen. Hence they are dead already, and so walking dead.

To a certain extent I feel this way right now. My wife has a terminal disease, which means that currently we know how the story will end, barring some new breakthrough in medical science. And that means we are the walking dead, fully aware of our fate, and waiting for it. I hate the feeling of helplessness this brings, as I feel there is nothing I can do (and as a husband and father that is extremely frustrating). Every bit of treatment, every meeting with a specialist feels like an act of kicking the can down the road, putting off the inevitable. Every time we enter a new similar phase of waiting for scans with her being just that little bit weaker, with the disease being that little bit stronger.

There is hope. As I mention every day extra is a day closer to a cure, as well as being an extra day together. These days were not expected, and we have been able to make the most of them. However those good days become less and less, and the bad days become more and more. Today has been a bad day, as the treatment has been exceptionally tough, and cumulatively has really kicked her. Thats it for now, we wait and see if it will do its thing while she rests and recovers. We wait while we all rest and recover.

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Def Con One

Sometimes I don’t get it. I can remember whole lines of raps from Pop Will Eat Itself songs. I can recall the lyrics to chart hits from the 80s and 90s. I can name the Manchester United first team from 1986. But I have to make long lists of tasks I need to do. Post it notes adorn my desk. Bits of paper blu tacked to the wall. Especially tough right now as there are lots of appointments to recall.

Last round of radiotherapy is tomorrow, if she can make it. As I mentioned before, there is a real mental blockage, particularly around entering the hospital, wearing certain clothes, eating certain foods. I have to remember to wash and put away the hospital outfit in the right place, and not mix it up with anything else. I need to recall what food cannot be eaten, and even if drinks need to be taken away out of sight.

She gets physically sick entering and leaving the hospital. And when at home, she is still sitting in bed all day, not able to get comfortable or rest. This treatment is brutal. Poison for the body, poison for the mind.

The rest of us are again in a weird state. Life outside goes on as normal, while behind our front door exists a different reality to everyone else. The children are managing to do their school exams, and are so brave at doing that, dedicated and hard working. I go to work, and it feels odd that people dont mention or ask, despite many of them being aware of what is going on. I guess that you dont always think what is happening in other peoples lives, I know I dont.

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Death by a thousand cuts

Four rounds now, and they are starting to bite. She is struggling to get into the car to go to the hospital, let alone get out the other end and have the treatment. Because of the location they are targeting on the liver, which is close to the bowel, every time causes more and more sickness and nausea, sometimes even physically. And then add in the mental aspect as the knowledge of how she will feel afterwards causes anxiety, and she is in a really bad place.

Finding food to eat is tough. She doesnt fancy anything, and when we put something in front of her, she may pick at a bit, but cant eat it. She has lost alot of weight, and looks very weak, and feels trapped in her own body. Unable to go too far without full strength, she is currently lying in bed looking at the ceiling.

I worry about this reaction, as this time round it feels different from before. Yes, she has had a bad reaction to chemo, and has been hospitalised following immunotherapy, but right now she is losing strength, and also losing the will. I see a depression that is staying longer, that is taking over every minute when she is at home, and awake. And that is often, as the pain from her liver makes it hard to get comfortable.

This must be the way that cancer finally gets its victims, by slowly weakening them, until they can face no more. The methods used to try and erase the tumours are so strong, so damaging, that there is now wonder that eventually the patient loses the strength to do any more. Though I hate the analogy that a cancer victim loses their battle (I feel it implies that they didnt do enough), I see the way that cancer is a death by a thousand cuts, taking a little more away every time, not leaving enough time before the next round of treatment, that will weaken a bit more, and then not leave enough time until the next round, and so on, an ever shrinking circle of treatment, then waiting, tormenting the mind, and hurting the body, leaving a permanent worry about what is going to come next.

As you may tell, this feels a very dark time for us as a family. With luck, we may come through, and my wife may gain her strength back, and I really believe that she can (she has beaten so many odds before). There is one more round of treatment, and then a longer break before scans to determine what has happened, when hopefully we will see the results that outweigh the pain.

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Gove, Patel and a 2nd Round

I know that the two arnt connected, but yesterday was the 2nd round of my wifes radiotherapy, and it coincided with some quite unbelieveable exhibitions of wankery from certain Tory ministers.

First up was Michael Gove, a living Pob puppet (one for the 80s kids), who went on TV and gave a series of interviews about the cost of living crisis amongst other things. And during this really serious, life threatening topic, this wet wipe of a politician did at least three funny voices that I saw, throwing out his comedy routine like he was on Britons Got Talent. Our leaders should not be demeaning very real issues in such a way. The people who elected him as an MP should be deeply ashamed, and to be honest he should as well, but I suspect that whatever chemical comedown he is undergoing today will take his mind off it.

Second in my list of Tory ministers being absolute loathsome creatures is perennial ranking officer of the dark side, Priti Patel, refusing to engage in debate with her opposite number, and sitting making faces during a session in parliament. The way some of these entitled buffoons act when in the Commons makes your eyes bleed. If they engaged in that type of behaviour in any other jobs they would have been shown the door years ago. It is behaviour that small school children grow out off very quickly, as they learn what respect and dignity are, which then develops into a professional attitude. There is nothing professional of dignified in the way our so called leaders act right now, treating the country as their personal play thing, laughing at the very people who elected them in the hope that their lives would be improved. It is deplorable, and they should be deeply ashamed, but obviously wont be.

And I havent even mentioned the sack of shit in a cheap suit that is the Prime Minister. Another day, another rant at a priviliged over promoted wank sock will come at a different time.

This all coincided with the second round of radiotherapy, which went about as well as you could hope. The anticipation meant that she was not in the best frame of mind going into it, feeling sick, and then the inevitable delays meant that she was longer in the hospital, and was then ill when she came out. She has lost alot of weight, and looks very frail. It breaks my heart that there is nothing I can do but watch as my family and loved one falls apart in front of my eyes, seeing the fear in her eyes, and trying hard to make things comfortable for her.

These are the issues that real people are dealing with, and yet the names mentioned above live in a different world, where everything can be treated as a joke, and where there are no consequences. The way people are treated now makes my blood boil, and it is amazing how little empathy they have.

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10th May

The radiotherapy has started this week, and so far she has had alot of tiredness and nausea, so the it hasnt gone well. We didnt expect it to be quite so tough so soon, but apparently the location of targeting the liver so close to the bowel makes it tricky. The specialists had given us the potential side effects, and these were on there, however like most people we had kind of thought it wouldnt start so soon. Kind of thought it would be a cumulative effect as opposed to instantaneous.

Obviously this will make the remaining trips to the hospital much harder, as now the psychological aspect will manifest itself. Already she has problems with certain foods and clothing associated with previous trips, and this is only going to make it worse. We have to ensure that certain containers or bottles are not around when she is in the room, as she will almost have physical response. I’m not a scientist, and so struggle to understand the full concept, but can understand on a basic level.

What has also made it harder to accept has been a couple of social events we have attended recently. One was a party on Saturday night, the other a school awards ceremony today. Luckily we could both get there, but due to the current situation were not able to fully enjoy the events. Saturday night was particularly hard, as everyone there was dressed to the nines, drinking and chatting away, while we were able to talk to a few people before my wife got too tired and had to sit in a corner, before leaving early. It doesnt feel fair, that after so long of us having this diagnosis and sentence hanging over us, we are still dealing with it, while the world has now come out of a pandemic and is coming back to life.

Interestingly, there is a theory that post the Spanish Flu, people were determined to let their hair down and enjoy life to the max, and that this led to the ‘Roaring 20s’, and that we may see something similar now (cost of living crisis allowing), and I did feel that at the party we attended that was the case. It thus felt very frustrating to not be able to do that, and also have the knowledge that for us life hasnt changed back.

Next round is tomorrow, and this should be quicker as they know the dose to give. But lets hope the side effects dont build on today.

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Radiotherapy on the liver

Latest news is that scans have shown that the cancer has spread further to the liver, and quite big at that. 6cm, which when I look at guides on line, is stage 3. I take this as being pretty bad, and that was echoed in the speed that the specialists moved to arrange radiotherapy to attack it.

First up was a trip to get the gold markers put in. These show the technicians where to aim the radiotherapy beams, and make sure they dont miss. This was quite quick, but left her feeling achy, and her side was hurting. It felt like a stretching at times, and coupled with the noticeable swelling shows that this treatment is not before time.

Then today was the first session. It was a bit longer than hopefully it will be going forward, as the scientists had to do lots of calculations to ensure they gave the correct dosage. But eventually I got the message to say she was out, and on her way home, thankfully. Tired, and again aching. But home, and so far, no other side effects. But I suspect it will be cumulative, so we wait and see.

It has been a stressful time, as the children have exams. The youngest started SATs today, while the eldest has GCSEs starting in earnest next week. Not the greatest of timings to begin a new round and type of treatment.

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Boris

Yet more outrage in the UK as our Prime Minister, Boris Johnson, apologises for attending a party but not realising it was a party. We seem to get all kinds of linguistic gymnastics with the excuses the Tory party come up with. ‘We followed all the rules but didn’t do any wrong’, ‘It was just a work meeting’. They are treating us all for fools.

There is some sort of thinking at the higher levels that the rules dont apply to them, that because they are working for the country they can do what they want. The apologies show this – we are sorry for the perception is a typical line. However it isnt the rule breaking as such that annoys – it is the lack of understanding and lack of empathy for everyone else. Trying to get out of the responsibility on a technicality is a weasel way out of admitting your guilt. Saying that you were technically correct within a correct interpretation is insulting to the nation, and goes against the ‘We are all in this together’ line that I recall being made on numerous occasions.

We are being led by a group of over promoted public school boys, people who have never had to worry about the rules as their money will get them out of any issues. Speeding ticket – pay your fine. Trash a restaurant – pay off the owner. Bored of your wife – pay her off and no one need know about your children ever again. It is a sickening thought that we have ‘leaders’ with so little moral fibre, and for whom the whole parliament process is a game. Sniggering when asked questions, not bothering to turn up to important meetings or even turning up to face the heat.

I doubt that the current crop of MPs will go willingly if they are in the wrong, unless they are a junior minister, and so we need a concerted effort from the voting public. If only people paid as much attention as they do when X Factor or Im A Celebrity are taking votes, then we would have the leaders we need, not the leaders we have.

Boris will now hide behind an investigation, pressuring the civil servant conducting it to give him the result he wants no doubt, and this is wrong. The whole affair smacks of dictatorship, and we have walked into it willingly.

One of my favourite authors growing up was George Orwell, and while I dont like the constant references to living in Orwellian times (usually made by people when talking about CCTV or vaccines, and not having read 1984), I cant help but think about Animal Farm – ‘The creatures outside looked from pig to man, and from man to pig, and from pig to man again, but already it was impossible to say which was which’

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Buffalo Soldier Coffee

I like my coffee. For years I have made a pot first thing in the morning, and drink it black, probably having way too much during the day! However, recently I was getting bored of my regular beans.

I grind the beans each day, unless I am feeling lazy, and like strong flavour-full coffee. A dark roast is perfect for me, without milk or sugar. It has to have a hit, a richness, and give me the perfect kick in the morning.

I like a company called Imperial Teas, and their Voodoo Comet roast, though also like regular espresso beans from the supermarket. I dont like a coffee that is weak and doesnt follow through.

So I was very pleased to find a new brand – Marley Coffee. This, as the name suggests, comes from Jamaica, and is owned by one of the Marley family. This dark roast is smooth, and velvety, with a chocolate like finish. It is extremely drinkable, and is a coffee you look forward to drinking. Additionally the name is awesome, and it is organic with a climate pledge. It is the best coffee I have discovered for a long time. You can buy it by clicking on the link below.

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Involuntary Celibate

The dictionary definition of an Incel is a member of an online community of young men who consider themselves unable to attract women sexually, typically associated with views that are hostile towards women and men who are sexually active. The name is short for Involuntary Celibate, and this has driven these men (for want of a better word) to extreme thoughts, feelings and even actions.

They see themselves as unable to get a partner, either romantically or sexually, and as such foster hatred towards the world, and women in particular. The ideaology has grown in the darker areas of the web, and includes threats of violence and rape towards women, who are blamed for the position the incel feels they are in. Extreme misogyny, hatred, even racism, can be brought out in the groups, and this has at times exploded into the real world. Mass shootings have occurred in the States since at least the early thousands, and this has been seen in the UK (one shooting last year was allegedly by an Incel).

This is horrifying. How can young men become so disillusioned with hate, so angry at the world that they lash out in such extreme circumstances. We know that an active sex life does have benefits. Amongst the cardiovascular work out, and increase in immunity, the act can relieve stress, boost self esteem, and deliver a serotonin kick. It doesnt take much to see the link between the lack of these, and the reactions we see above. Additionally being in a healthy relationship also brings about feelings of happiness and contentment. Frustration at not getting this grows, particularly when the internet and TV can depict sex and women as easy to get.

This is not to excuse what happens on line or in real life. The feelings generated have to be controlled, and being alone in an on line community is a rabbit hole that can be hard to get out of. The peer pressure pushes more extreme actions, and what starts as a joke can quickly head into much darker areas. We see this when groups of men and women are out on a stag or hen do – a small joke with someone can be egged onto ever increasing levels of bullying, often in the name of banter, without realising that the other party is not happy, is not comfortable, and that we have crossed a line.

So why do I write about this? I have realised that in a very real sense, I am an involuntary celibate. With my wifes illness, she is both concerned about sex and potentially passing on her disease, but she is also in too much pain to partake of the act. So through no fault of my own, I am in that situation. And I have more of a reason to be lashing out at the world than these pathetic individuals. I feel stressed and angry and disappointed at what has occurred, I feel the need for some release, but cant get it. I see how young men who see these depictions of sex and women feel rejected by the world, but I cant for the life of me see how they can push into the extreme reactions we see.

We all have a choice to make about our lives, and rather than lashing out and blaming the wider world, we need to take responsibility for our actions, and create our own path out of whatever we are in. And no, that doesnt mean taking what we want, it means working within societies norms, engaging with other people in our communities and becoming the better person so that we can have the relationships and life we want the correct way.

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Musical Highlights 2021

So, rather than a list of my top albums, I have a list of my muscial highlights for the year. They arnt in any particular order.

First up is a highlight and a lowlight. The Manic Street Preachers released a new album, The Ultra Vivid Lament, and as seems to be the way over the last decade or so, it is a belter. There are tunes reminiscent to their lost gem Lifeblood, with a glacial tuneful sound. One song (The Secret He Had Missed) even has ABBA like piano. The songs knaw into your brain, and pop up unannounced. It is in short a triumph. There are the customary guest appearances (Julia Cummings and a gravel voiced Mark Lanegan on Blank Diary Entry). Dont Let The Night Divide Us, Still Snowing In Sapparo and Into The Waves Of Love are particular favourites.

So why a lowlight? I had to miss seeing the tour when it rolled into Wembley Arena due to fears of Covid. Gutted is too small a word to describe how I felt. I have seen the Manics live for every tour for the past couple of decades. They are a great band live, James is my guitar hero, and Nicky a cool tower of a bass player, with Sean as the most amazing powerhouse drummer.

I did however make two gigs during the year, a pretty poor amount in comparison to other years. First up was the long delayed final ever gig by Martin Rossiter, formerly lead singer with the band Gene. Unfortunately none of that band were on stage with him, and by all accounts had not been informed before it had been announced. The gig started with one of his solo songs (Three Points On A Compass), before hitting a run of Gene classics. The band with him took a while to grow into the gig (they did look very young), but it did take flight. I had forgotten how well the Gene back catalogue soared when performed live, and it took us back to the high spots of their live gigs of the late 90s and early 00s.

Second gig was another delayed one, this time The Levellers. Originally this was going to be in support of their most recent album, but was now a 30th anniversary of Levelling The Land (where did the time go?). This meant the album in full, followed by some greatest hits. At a time of great political stories (the PM amongst others not behaving shall we say) it was amazing how relevant the intro film from the early 90s was. Their gig was great, and a big surprise was the support act, The Leylines, who were probably the best support I have ever seen. They really got the crowd going, and were a perfect warm up for the main event. It is always great to find a new favourtie band when you watch the support, and is also a good way to help new music.

Back to my favourite albums. Next is the War on Drugs with I Dont Live Here Anymore. I had their earlier album Lost In The Dream, but had lost touch until reading about and hearing initial songs this year. They produce wide range, broad music, the kind of music you play on a long road trip across California. Similar heft to the Manics in terms of the need to be in the open air, on the road – must be a reaction to our being cooped up in lockdown on and off for the last two years.

Bobby Gillespie of Primal Scream always talks a good talk, and his band have done exceptional work in the past. This year he released an album with Jehnny Beth, a kind of modern Lee Hazelwood and Nancy Sinatra, called Utopian Ashes. This is brilliant, smoky late night music, with a swagger and softness to it. Remember We Were Lovers in particular is a highlight.

One of my favourite tracks of the last couple of years was James All The Colours of You, and the accompanying album didnt disappoint. They have grown as a band in the last few years (I saw their farewell tour nearly two decades ago, so was shocked when they reformed!), and the political element along with a mature songwriting fits the vibe for 2021!

Finally albums that caught my ear, but havent been played anywhere near enough include the Coral and The Anchoress. The Coral have had a resurgence in the last couple of years, and are back to their peak. Lover Undiscovered a highlight. The Anchoress is a special artist and her second album maintains the levels of her debut. She first came to my attention when dueting with the Manics, and her voice has an amazing quality to it. Her efforts for musicians rights need to be mentioned as well.

Other individual tracks have caught my attention. I mentioned Gene, and their drummer Matt James has released solo music, Snowy Peaks and A Simple Message, both sounding very good, and boding well for an album in 2022.

Dancing around the kitchen with the children has brought about some modern pop to my ears – Olivia Rodrigo with Good 4 U, and Dua Lipa with Levitating particular favourites. They werent sure about the Foo Fighters covers of the Bee Gees (released as the Dee Gees), but I will keep trying. I also struggled to get them interested in Wet Leg and Chaise Longue, but I liked the track – witty clever indie pop. Sleaford Mods were not played in those kitchen sessions for obvious reasons, but Mork and Mindy was great at the start of the year, and we loved the Weezer song Hero – unironic throwback hair metal.

So all in all, a good year. I have tried to listen to more new music, but have also found a great many throwbacks being pulled out. The need to reconnect with the past has been evident, but we have to keep forging forward.

There is plenty to look forward to in 2022 – I have some gigs booked, and hopefully I will get around to watching the Beatles documentary! Plus all being well, some new music will catch my ear, and I will find a new favourite.

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They’re getting their kicks, they’re laughing at you and me

First things first, we have had some good news, as the chemo has done good work and reduced my wifes cancer. No idea for how long, or how her long term outlook is, but she doesnt have to start any more treatment and has Christmas off! Yay, this is good news, and has made us all very happy.

However, talk of Christmas brings to mind last year, and the recent news of parties in the seat of power while we were all under lockdown has made alot of people very angry. I dont often write about my political views, and to be honest am not a big political person, but the hipocracy of our current leaders has made even me mad. Videos of government officials laughing about how they would cover up and answer questions about any illegal parties in Downing Street have come across with a real ‘we dont care about you’ vibe, and after the hardships of the last couple of years, which dont appear to be easing, must make their jobs untenable. Quite literally taking the piss, joking about a situation mos people were being deadly serious about. I’m all for dark humour, but read the room.

How can we be in a place where a serious allegation against the Prime Minister is being called out on I’m A Celebrity by Ant and Dec, where this then gets seen by thousands of people if not more, and yet still the government will brush it off by gaslighting the entire nation. George Monbiot in the Guardian called out the dangerous world we are living, and the path we are heading towards, and should be a sobering wake up call, to our opposition parties if nothing else.

https://www.theguardian.com/commentisfree/2021/dec/08/boris-johnson-grabbing-more-power-amendments-to-oppressive-legislation-uk

I worry where our country is headed, the same as I worry where my family is headed. We should be looking out for one another, regardless of colour or creed, however our nation seems comfortable with refugees drowning in the sea off our coast, with Anti-Vax idiots allowed to spew their vitirol, while the leading politicians have affairs in the very offices they are supposed to be working in, while their PM can spend public money on his wifes new decor. And then when you throw in Boris Johnsons dad seemingly appearing every few weeks to give his thoughts (seriously did we ever hear from Camerons relatives, or Blairs mum?), I do wonder if I have slipped through a looking glass. We look at Russia as corrupt, but never imagined that could happen here. Surely the end of Rome is near?

I am going to see the Levellers tomorrow, and this song keeps popping up. Keep the faith.

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Aerosmith – Pump

I have decided to start listening and reviewing music in A-Z order by artist. One album for each letter, and when I get to Z I will start again. I guess there may be alot of ZZ Top and Frank Zappa later on!

Anyway up first is Pump by Aerosmith, released in 1989, when I was 14. This was the first of their albums I had (I cant say bought, as a friend copied it on to tape for me, backed with Chers album Heart of Stone from the same year. Taping is killing music kids, dont forget.). I was aware of Walk This Way with Run DMC (who in the 80s wasnt?), but their other music had passed me by. My school friendship group was mainly into UK Indie, so that was the Housemartins, the Wonderstuff, The House of Love and so on. Hard rock crept in a little in the form of Iron Maiden, but not really the blues rock that Aerosmith brought to the table. I had also missed the previous album at the time (Permanent Vacation) which is a surprise now, as I know the big singles and could have sworn they were after Love in an Elevator. Strange how your memory plays tricks.

So it was Love In An Elevator that I first knew, which I recall with its cheeky video, and tongue in cheek lyrics, that a young lad of 14 was instantly drawn to! The song itself is a classic, and a great example of the more glam metal angle the band had taken. The backing vocals are also reminisent of Def Leppard on their Hysteria album, and before the grunge boom of the early 90s, was the way alot of hard rock was headed. The track also keeps a solid beat, with hard riffs, and attempts a little pschyadelic breakdown, changing the pace before coming back into focus. For the MTV generation, this was an ideal fit.

That may have been my entry to the album, but it starts 2 tracks earlier with Young Lust, a title also used for a best of in later years. No one could really accuse Steven Tyler and the band of being young, having formed in 1970, and by the late 80s they were in their 40s, which at the time seemed very old for a rock band. Similar to the Stones the UK music press derided them for being oldies, and were obsessed (and still are) with the next big thing, but in hindsight the Stones and Aerosmith were just continuing the blues tradition, playing on when teeny boppers were growing up. Incidentally around the same time Neil Young didnt get the same agism afforded those acts. Young Lust is a bombastic opening to the album, hitting at pace, and bringing Tylers mouth organ out for a run. Similar to Elevator though, the lyrics werent going to win any prizes.

F.I.N.E follows, the first of the tracks to use Desmond Child as co-songwriter. He had also co-written Dude, and other tracks with Bon Jovi and Cher. F.I.N.E again bursts through the speakers, a heavy baseline backing some wisecracking and sleazy lyrics, some dirty chuckles coming in quite frequently. When you add Elevator after this, the first three tracks are as good a start of any album that year, and show why it sold so well.

Monkey On My Back initially slows things down, starting with a dreamlike few bars, before bringing in the pounding drums that would be used alot by Guns n Roses on their Use Your Illusion albums. In fact, this track could be a companion to You Could Be Mine, with very similar guitar. Of course GnR have never denied their debt to the toxic twins. I’m a big fan of this type of groove, and have alot of time for the choppy guitar effects.

Janies Got A Gun follows, starting with a short interlude (these smaller pieces are used at various points through the album, setting the mood for what was to come). This is the first proper slow track, but with words about child abuse and incest, not a pleasant subject, but not one that stopped the song being released as a single. I love the drums again here, and Steven Tylers vocals have that little raspiness that he uses so well in the bigger ballads. It also continues the psychedelic feel, showing their roots in the early 70s.

That finishes the old side one, and if you did flip the disk, side two opens with another short intro before The Other Side, which features a heavy lift from Standing On The Shadows Of Love, so much so the band had to give credit for it. The track is classic Aerosmith though, riffing throughout, and a heavy swing to the song. This could have been made at any time of their career.

My Girl, despite the name, doesnt lift from any other tracks. Again it is classic hard rock. To be honest, though I do like the song, I feel the album does start to sound a bit cliche at this point.

And no more so than with the next song, Dont Get Mad, Get Even. It has all the right elements, but the lyrics sound laughable coming from Steven Tyler. Now if Axle Rose or Bon Scott had been the one sneering these, then you would believe them, and feel threatened, but in Aerosmiths hands it sounds try hard, and not a little laughable. The mid side sag hits hard with these two mildly forgettable tracks.

Next up Hoodoo / Voodoo Medicine Man keeps the rock going, despite the awful title. But this is just a prelude to what I feel is the song of the album, What It Takes. Now Aerosmith to my mind invented the big power ballads – Dream On has to be first of its kind, and they have since kept them going, but this song is my go to. Loud, in the car on the way home after a late night at the office, nothing beats it. ‘Tell me what it takes to let you go’ has helped me through some tough times (and to be fair still does). ‘Tell me how the pains supposed to go’. It has a pleading element, without being weak, it has a yearning for lost love, and addressing that love to ask why. It is great, nothing less.

And that wraps it up – all in all a good rocking album for the first review. Some tracks may be of their time, some may be formulaic, but overall it rocks, and what more do you expect or want from the band. This kind of sound was replaced by grunge in the US, and lost to Britpop and so on in the UK, but the band still toured and released music recently. I actually saw them play Wembley in 1999, the Toxic Twin Towers ball, supported by Black Crowes and Stereophonics amongst others, and that was a great night. These days, they are probably remembered more for the ballads, and being a bit cheesy, but what is wrong with that. It was an era of spandex, big hair, and big visuals, which got lost when authenticity of the next things came along.

The album can be found quite cheaply on Amazon these days, and I would recommend getting it (link above)

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Freedom Day

It seems like a good day to put up my next post. It has been a while, I will admit that, but the impetus just hasnt been there. My wife has now re-started her chemo, and has had three rounds, with a fourth to come this week.

It has been tough, she has a cycle of three weeks, which means in practice a few days worrying about the upcoming treatment, then the few days of hospital visits, and then a week or so feeling rubbish, and hopefully a few days in between when things feel better. She doesnt sleep because of the steroids, and then doesnt sleep when coming off the steroids, she feels sick, she struggles with eating some foods, and the list could go on.

On top has been the worry of build up to the end of Covid. Whats that you say? Yes, it is over the UK – Freedom Day, no more reason for masks or social distancing! Hopefully most people are like us, and realise that the measures going on now are not sensible. We will still keep our masks on (I like being able to swear under my breath in a shop and no one knows), will keep our distance and try our hardest to have some personal responsibility. My wife is still vulnerable after all, and having seen one time of her losing her lung capacity, and be put into a coma to breath, I do not want another experience like that.

We have been able to cautiously see family – I took my children to stay with my parents for the first time since Christmas 2019. It was great, they had a brilliant time. We are now trying to arrange more meet ups before the inevitable lock down later this year. I feel like a bad prophet, but I have seen 28 Days Later, and am sure that given a few weeks of people acting like nothing is wrong, we will be back at square one. Please hope I am wrong.

The children are coming to the end of school for this year – and have shown remarkable resilience. They have both had great reports, and have even been able to do some trips, and out of school activities. We have been lucky that there have been no close positive cases for them.

I may be going back to my office soon as well. At first I didnt want to, but now think I need some time with other people I work with. It will be phased however, and with no pressure, so depending how my wife is, we may have to be careful. Got to find the work clothes now – I am going to guess that I may have found the trousers have shrunk while in the wardrobe!

We had the Euros – and what a time for England. My son is nine, so for him this was amazing, a successful England team is all he knows. He was devastated at the end of penalties though – but so proud of the team. It has inspired us to play more – he is in a team, but we have been doing extra with his friends. And let me tell you – 8 and 9 year olds are much fitter than a slightly overweight 46 year old with bad knees! I was knackered for days!

And thats all for now – hopefully this weeks treatment goes well. Time to leave with my favourite tune of the last few months – James with All The Colours Of You. They are such a great band, and I feel this and the accompanying album are career highs. If you only know Sit Down or Laid (and if you dont know those tunes shame on you), check this out.

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Living on a thin line

Today was the day of my wifes scans. CT and MRI again. It is a stressful day, obviously she doesnt want to go into the hospital, and who would blame her. It means confronting the truth of the disease. She mentally cant take anything in with her, and has special clothes just to wear for the appointment. She will even take her phone out of its cover and use a different one. Then everything is washed and cleaned as soon as we get home. Currently as well no partners are allowed, so she has to do all the appointments on her own.

For the family it means we have to tread on eggshells, cant make the wrong move. I hate it. Addressing the reality of our situation. Especially as we know that there will be treatment starting soon, probably within a few weeks.

She will then spend the rest of the day mentally exhausted. And again I find this really tough. She is not quite ill enough to need treatment, but not well enough to be doing things normally. She will be nauseous, resting on the the sofa, not able to eat, but well enough to be a presence. After five years, we know what to expect, but it doesnt get easier to deal with. I have said before, but it feels we are stuck in a loop, and cant move on with our lives. No closure either way, means we are damned to do the same things over and over. Pushing the burden around, until when? What?

This is the equivalent of ripping off a plaster slowly, it hurts for longer, as opposed to the quick rip and short sharp shock. Would it have been better for us to have lost her 2 years ago? Would we have grieved, and then been able to address things? That is the taboo question that cannot be asked. Would the short sharp shock have been easier on us all, instead of the family having a mental burden that is bringing all out thoughts and health down.

After a year of a pandemic, and with money pressures bearing down on us, mentally we are all shot. Not sleeping, not able to concentrate and not finding joy in our past times. My wife cant read as her eyesight is still not back properly, and finds it hard to see the words. She is desperate to drive, but again legally cant do that. So TV is the only respite, as apart from walking or me driving her she cant get anywhere. And as I work I cant take her around all day. Hopefully as things open up, we can re-engage with other people nearby.

I am by nature usually quite strong, and get on with things, but do find myself questioning why through all of this. What is the point behind it all, why do we keep redoing the same things, and what will happen at the end. Sometime I think there is no point to it all, and we are doomed to live in pain and anguish. But I have children and need to fight for them. The children need adults to show them the way, and guide them through this, even when they are only 9, and have spend half their lives with a seriously sick mother.

The song just came into my mind. Love the Kinks, and think they should be respected more. Enjoy.

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Here’s Negan

I’m a big fan of The Walking Dead, have been since it started. Even through the years when it has lost fans, and the story may have sagged (The Saviors war, the farmhouse etc), I have kept with it. And this week series 10 finished (only what 18 months after it started – damn you Covid!!). The final episode was Here’s Negan, the backstory of the titular character, protagonist of earlier series, and all round badass.

I have to say I have been taken with Negan as a character, and Jeffrey Dean Morgan as an actor. They both have an effortless cool (smashing people in the head with a baseball bat aside), and brought a lot of menace to the series. This week we saw how that came about, and why he was how he was. And of course, cancer has to play a part. I have noticed that many programs now use cancer as a plot device, which when you are living with a sufferer is very annoying – we had to stop Deadpool for instance, and struggled with Cold Feet in the UK when a main character got breast cancer.

But I feel that The Walking Dead dealt with the subject very well. I saw a reflection in the way that I need to protect and do anything for my wife – Negan heading out to find drugs, and refusing to leave the cabin as it is too dangerous for instance, matches how I feel when my wife requests a particular food stuff, or I want to keep her safe during the last year of the pandemic. And then the way that Lucille wanted to try and control her environment – this is exactly how my wife feels – she cant control her health, but can control how our house looks. The portrayal by Hilarie Burton was amazing.

And finally, I can see how the change came about in Negan when his wife dies. Not just the anger causing a reaction, but the mental reaction to the stress that has built up, the release of the end of the feeling of being held back by the disease – that is how I feel alot. Similar to Negan – we are trapped by the cancer, cant move on, and feel paralysed with fear, and confusion. I dont know how to move on, but have a feeling that when the day comes, that is when the pressure will lift.

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Easter

We have had a nice few days away, and been able to relax a little. We got in some cliff top walks, with great views, and surprisingly warm weather. This did lead to my wife being very tired alot though.

This is a chance to forget our troubles. But they are always at the back of our minds. She is in for scans next week, probably with treatment starting in the next few weeks.

We can wish for some resurrection, but I know it won’t be happening. Five years in, I am realistic where the end will be, and it likely won’t be positive. Unless a miracle occurs, sadness will come to our family. Sometimes I do feel this would be best, as we have the pain of waiting, but then I do wish things could be more happy. Prepare for the worst, that is the mantra.

This disease has held us back. Friends move on with their lives, while we are sat in a holding pattern. But maybe that is an excuse not to be trying harder. I should be more positive, and do try, before my wife has an evening when she collapses on the sofa and crashes asleep all evening. It is a bitch of a disease.

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Spring Heatwave

Strange day yesterday. We had a mini heatwave in the UK, and the temp hit 19 degrees. My daughter was off for Easter hols, while my son was still in school, a difference that always causes friction. I even went for a run in the heat, which was a bit silly.

No, the strange thing was how tired my wife got. She hadnt done a great deal all day, had a friend round in the garden as per the new guidelines, and done some tidying, but by 8 pm she was out for the count, lying in bed, fast asleep.

We are seeing an increase in her tiredness. Most evenings she will fall asleep early, and be struggling to get up in the morning. Along with a sick feeling, things are not looking good. Her symptoms are very similar to when she was originally diagnose. Her belly even looks a bit swollen, which happened before when the acites built up in the peritoneal cavity, caused by the tumours.

If she doesnt start chemo by the end of May, I will be very surprised.

I have said before but it is affecting the kids, and we are having my son not sleeping well. He wakes in the night, but at least now I have got him to come to me and not my wife. Hopefully the start of outdoor sports will help as football training starts tonight.

We are taking a break over Easter, and getting away for a few days (within the guidelines), and the change will do us the world of good. We have had over a year at home together, and we need a new space to be trapped in. Being in our house means that all the DIY jobs that need doing become more pressing all the time, and dissatisfaction kicks in. Personally I want to get some fresh air, and hopefully a full nights sleep.

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Coming out of my cage

It’s been a while since I have written here. No, denying, covid lockdown has been tough. And long, so very long.

But now, both my wife and I had the jab. Astra Zeneca if you must know. I had what felt like flu for a day and my wife was a little worse, but that was to be expected with no spleen. So far no long term side effects, but the radio does buzz when I pass by. Waiting for my instructions from Bill Gates though.

But mentally things are still hard. My wife still can’t drive and that is doing her head in, extreme depression from the awful situation has kicked in. This is how life will be, her feeling nauseous and tired every evening.

The latest results show some progression in tumour growth, and will probably mean treatment by the end of May. We are not looking forward to that.

Sometimes I wish the scans were more conclusive, rather than this delaying all the time, wait a month we will do more scans, maybe treatment in a few weeks. Some one said it is the waiting that is the hardest for carers, and I agree. I feel we can’t move on with our lives with this hanging over us, five years of intense pressure while our world is on hold. It feels bad to say but I sometimes wish it had ended a few years ago.

The children are feeling it too. My son is very clingy, and knows she isn’t well. He is waking in the night, and that doesn’t help us.

End of lockdown should be a joyous time for people as we can see loved ones, but for us it will be a return to the awful reality that has been hidden and obscured by covid.

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A little bit political

I struggle in the world we now live in, to comprehend how the people who ‘lead’ us manage to get into the positions of power. A little like the proverbial turtle on a post, they appear, get voted for and then show a very scant amount of authority.

The UK is led by Boris Johnson, a man who when he became Mayor of London, seemed like a fun figure, but who then got less and less done. He campaigned to be PM following Mays tenure, and has shown very little aptitude for the role. As people cleverer than me have said, he wanted to become PM, and wanted to have been PM, but just didn’t want to have to do the actual being PM part. Even more shameful is his apparent use of un-elected advisors (the infamous Dominic Cummings) which has led to a country divided. We are in the midst of the worst pandemic in over a lifetime, heading towards the cliff of a no deal Brexit (despite having an ‘oven ready’ deal ready to go), and yet the biggest concern surrounds the nickname his partner receives from these overgrown school boys. He exists in a world of jobs for the boys, stiff upper lips, and throw backs to Latin lessons at Eton – impressing people with big words and convoluted sentences, which under examination have little substance.

In the US, we are hopefully seeing the end of the tyranny of the Donald being president – another divisive figure to say the least. In his four years we have seen families separated, walls built, Muslims banned from entering the country, support for the right wing, Russian interference, Black Lives Matter protests, and countless other events. The story is so nonsensical you would struggle to write it. And these cancers have spread around the world, bigots emboldened by the leader of the free world and his lapdog in the UK calling Muslim women post boxes, and deriding the fear black men have of police, while keeping the racists and conspiracy nuts fuelled through their own crackpot ideas. Think Covid is a hoax – Trump will support that. Think Brexit will make the UK a superpower – Boris will support that. Think our fishing is more important than the creative industries – Rees Mogg the haunted Victorian pencil will support that.

All of these men have massive followings. They brought out the thoughts that people kept hidden, the hate they kept down. Humans are not as tolerant as we like to think, and by exploiting this (anti foreigners, isolationism, just them funny brown people) Boris and Trump have found massive support. And this can not now be put back in the box, the genie is out. I dont get political very often, but I believe this is unforgivable, and they should be held to account for it. The people in the country I see as leaders dont have grand ambitions to have power over the general population, they lead by showing the way. Marcus Rashford has led on ensuring children are fed, an amazing thing to do at his age. During lockdown other heroes for me have been Tim Burgess of the Charlatans, organising listening sessions on Twitter, and on a local level the shop and cafe owners banding together to help self isolating neighbours. They have all led better than Boris has ever done – not caring about their approval rating, or the latest three word slogan brainstormed by a marketing executive who has never seen a real job.

But we have had some light this week. Biden has been declared the winner in the US, Cummings has walked out of Number 10, and we may have a vaccine for Covid-19. What has been a really tough year, may be coming around at the end.

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Hanging by a thread

We lost a family friend today, aged 48. Still waiting for the full details as he was out on his bike, and found by the road. But it hits like a hammer. Someone I have known for over 25 years, snatched away in seconds. His wife and kids left behind. His brother, one of my best friends, torn apart. You realise that life can be so cruel.

This year has been particularly tough. Mental health is at an all time low, the world seems to be closing in on us all. No respite in sight, a recession happening, and winter is coming.

Anyway, keep safe. Nothing else to say

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Dread (don’t judge)

I seem to have a feeling of constant worry at the moment. The world feels that it is shrinking, everything becoming over whelming. I avoid the news to a certain extent, but the constant concern is a real pressure.

My wide had her latest scans, which came back ok, only a slight worsening but no treatment at this stage. But I still wonder what the point of everything is. Why do we have this life, what is the point of everything. We stress and worry for what.

I have non stop headaches and stomach aches and developing insomnia. It would be nice to have some good news once in a while.

My work is also having a bout of restructuring, which means jobs going. Shouldn’t be my department, but no one can be safe.

All this builds to a constant in relenting pressure. A sense of dread. And we are all sick of it.

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The people who grinned themselves to death

When I was younger I went to boarding school. This was the 80s, 1986 to be precise for my first year. The house had approx 60 boys, which meant a lot of older brothers! My music taste was generated during these formative years. I was exposed to lots of 80s indie, rock, metal, and the odd blast of the Macc Lads. Sweaty Betty will live with me for ever.

A few bands stuck early. (I did move on to the Smiths and REM later), but first the wonderstuff and the Housemartins. I loved both of these groups, and having older ‘brothers’ I could get copies of their albums. Sprock (no idea of his real name or where he is) had a double tape deck, and a big collection. With a few packs of TDK 90 minuted tapes, I was set up. One album each side. This did mean I would often not hear the end of some albums – it took years for me to hear the final tracks.

One tape had the Housemartins two albums, London 0 Hull 4 with Happy Hour and The People Who Grinned Themselves To Death with Me and the Farmer, and Five Get over excited.

I still think it is a great album. It has really stood the test of time. Paul Heaton has grown as a songwriter through the Beautiful South, solo and now with Jackie Abbott. The political element still holds, maybe not as overly militant as the 80s.

But it is the title track of People I love. It holds up well still. A discourse on class and the British Royal family, the song could have been written this year.

Also strange to think the members of the band moved on to do many different things. On bass was Norman Cook, laterly Fatboy Slim, with the previously mentioned PD Heaton singing and songwriting. Dave Hemingway joined the Beautiful South and Stan Cullimore became a writer.

They didn’t last very long, but the impact of the Housemartins was great. For me, I listened to them for years, and go back every so often. And during the lockdown, I have been listening to a lot of music from my youth. It gives a sense of comfort, of looking back. Even when looking at the dreary 80s, living in the midlands in the UK!

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Continued Lockdown

I write this the day after Boris Johnson has announced extra measures to try to control the CoronaVirus. I am finding this very tough. On top of everything we have had to put up with on a personal front for the last four years, it now feels like the world is falling apart. I havent been able or inclined to update for a few weeks – there doesnt seem to be much point.

But we will prevail – despite the hard work needed. I despair at times about my fellow man – the Covidiots out panic buying, refusing to wear masks, putting others lives at risk. My youngest went back to school for three days, before a positive test took his class and two others out for two weeks – one family had been away on holiday, had symptoms, and still came to school. Luckily he was fine, and we are so far, but it goes to show the potential areas for concern.

My wife was back in for scans today. The hospital only allow her to go on her own, and she has to have a couple of masks with her. It is a big worry – a close friend caught Covid at the same hospital. Then there is the worry about the disease – she is feeling tired, and bloated – very similar to when she was first diagnosed. We have been lucky, but I fear the worst.

I am struggling to take my mind off working from home, money issues and health. I am resorting to my favourite music of my youth – Jellyfish, Blur, Housemartins – and trying to regain that feeling of 30 years ago. It wont be back…

This is todays favourite – a blinder of a retro tune at the time. Members of the band have since gone on to play with Beck, do TV music, work with Morrissey, but never reached the heights of the Bellybutton album.

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Menswe@r

This week Menswe@r have released the single “Wait for the sun” from their un-released in the UK second album (it was released in Japan). This was a surprise, but is part of a 25 year celebration, with a box set to be released covering the debut Nuisance, the second album Hay Tiempo! and various singles and demos.

I was the right age for Britpop, and so remember Menswear starting out. I read NME every week, and pored over each article and advert.

I recall hearing about this band, and then heard their debut single “I’ll manage somehow”. It had a squall of guitar at the start, and a great shout along chorus. It was brilliant. I managed to track down a copy, I have a feeling I had to mail order (no internet kiddies!) as only a shop in London had it.

The debut album arrived in late 1995. I was on a year out from Uni, living in Scunthorpe in north Lincs, not exactly a hot bed of music, but this helped keep me going. Tracks like Daydreamer, Being Brave and The One. Yes it was derivative, with elements of Blur, Wire, and most Britpop staples, but it was fun, shouty, and just great pop.

They were a little derided in the press. They had formed following an article in Select magazine about Mods, where two members interviewed mentioned their nonexistent band. They hung about in Camden, drank at the Good Mixer, and were typical of the mid 90s Britpop era. And they exploded pretty quickly, the band falling apart around 1997, when the second album didn’t get a release.

By that stage I didn’t miss them, I was onto other music – my tastes were less poppy and more long form, matching the Britpop hangover in the music scene. However, revisiting their music is great, and they stand up much better than some of the bandwagon jumpers who were signed in that time.

Go ahead and buy the box set. They played great poppy guitar music, had amazing confidence, and dressed superbly. All things I lacked!

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Latest lockdown listening

After catching up on Peaky Blinders, I have listened to a lot of Nick Cave and PJ Harvey. The series is highly recommended by the way, another career high for Cilian Murphy. My wife and I loved it.

But this evening, after a hot day, my 8 year old son saw his two best friends playing together next door from out of his window. One of them does live next door to be clear. We are still under quarantine in our house, despite the government supposedly easing the lockdown. So he found that really hard to see, and it devastated me. He is young, and half his life his mum has been ill, in intensive care twice, and now at risk of another serious virus.

So I have been resorting to art now, and tonight Polly Harvey, and particularly Down By The Water, from 1995.

I have had an on off relationship with PJ Harveys music. I liked her early stuff, then lost touch until Stories From The City in 2000, and again until Let England Shake in 2011. But working back I have found her whole catalogue, and this tune is especially good. The spoken word ending, “Big fish, little fish, swimming in the water, come back here and bring me my daughter”. She has mesmerising way with lyrics, and a ghostly way with a melody, that combined bring an almost spiritual feeling to the song, that at times seems like you have known it forever, but are still hearing it for the first time.

I can really recommend it, and in the current climate, suggest it as a great way to make the pandemic go quickly.

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#stayalert

So the question has to be – WTF? What on all that is holy has Boris Johnson decided now? The most muddled response to a crisis any of us are likely to have ever seen, apart from our transatlantic cousins. No one seems to understand the requirements placed on the country, and large parts of it dont seem to give a fig.

Well, we do. My wife could still end up going to intensive care, because people are bored with the lockdown, or want to have a conga to comemerate VE Day (because Winston Churchill famously led a conga line at Yalta). Sometimes it is embarassing to be British – our so called ability to ‘Keep calm and carry on’ – unless a BBQ and beer is involved. We will keep our self isolation in place for as long as it takes. Work dont expect me back in the office, and we wont send the kids back unless absolutely necessary.

We are still healthy here – the stress of being confined is the worst aspect, but we are very lucky to have a garden and seperate rooms to be in. Home schooling is tough for an 8 year old, but more structured for my 14 year old.

The next tough thing is the amount of food we get through – four of us for three meals a day – it takes a lot! But we are being very structured, and planning well. Only the odd arguement along the way.

That is all for now – keep on, keep safe, protect the NHS. Don’t listen to the Government, they are only out for their moneyed friends, and dont care about us.

One from Neil to leave you with – one of the greatest songs of all time!

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I’m caught in a trap…

I can’t walk out…

So we have basically been under a form of house arrest for over a week now – we have enough food, and have managed to get supplies. Our local village has had some of the business owners club together to deliver food and essentials to households. We can’t help deliver as my wife is one of the 1.5 million in the UK who is at extreme risk, but we have been able to man emails and so on.

The atmosphere is very bizarre – school is closed, so we are trying a bit of home schooling. Our eldest is at secondary school and they set work on line, whereas the youngest is primary, so we have tried all sorts. Lots of maths websites and past paper kind of thing. And we have played a lot of football!

I can work from home, like most of the rest of the world it seems, and that brings its own challenges. Looking at files is hard without a printer, but we are learning. Luckily the weather has been good so far, so we can go in the garden. My wife isn’t supposed to leave the house at all, but if this keeps her from the virus it will be worth it. So far she is staying healthy.

We did go out to clap the NHS workers, which felt a good thing to be part of. They are an amazing group of people, and we don’t appreciate them enough in this country.

The weekend was strange, not being able to go anywhere. It was much like the rest of the time, but I didn’t turn the work computer on.

Our biggest concern is getting supermarket deliveries, and also cleaning every delivery that comes in the house! We have never been so tidy!

What is getting us through? Lots of TV – some joy in the Disney + and the Mandalorian. I have listened to some new music – the latest Pearl Jam is very good, a solid addition to their career – hopefully they will still be able to tour this year. I have also re-discovered the work of Mike Nesmith (from the Monkees fame) and his solo career. You may know the track Different Drum that was covered by the Lemonhead. It sounds nothing like the Monkees, and the nearest touch point is probably Gene Clarks seminal album No Other. You can find them both of them to buy on these links:

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Finally REM is always high in my thoughts. Keep safe everyone.

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Isolation

I haven’t written anything for a while as I haven’t had the motivation. As in the rest of the world, things have gone really scary and surreal. Last week we started quarantining ourselves, keeping the kids home, not going out. I am working from home.

The corona virus is really scary – my wife is very high risk of infection, and really worrying issues if she catches it. Everything has closed down, no more trial, in fact no more hospital visits. I have a feeling of impending doom a lot, not knowing what is going to happen. We are trying to make things work at home, keeping the children occupied, but it is hard. They are young, they are scared, and the longer this goes on the worse it will be mentally.

The media doesn’t help – lots of footage of empty shop shelves – what is with that. A great deal of ignorant arseholes clearing the shelves of items, that will no doubt go to waste. For most people if you are sensible, you can go to the shops but use social distance – for us there is a clear risk of that simple activity. But we didn’t stock pile. I don’t need 100 toilet rolls and piles of hand soaps. I cant even get tonic for my G&T!

Our leaders don’t seem to be very clear about what to do – keep away from the pub, but we wont close it. Don’t be in groups with other people, but we will keep the parks open. We are led by idiots at times.

And of course the mental toll. My daughter had had a cold, no temperature or other symptoms of the virus, but every time you get a slight tickle in your throat or headache you start to worry. I read the symptoms on line, and had to take a while convincing my self I just had a cold. And then not sleeping means you have a constant head ache.

I will try to keep more up to date going forward, but I suspect our news wont have much happening – at least I hope not.

For now, all I can end with is a plea – stay in your house, don’t go out, wash your hands, don’t be a dick. Not for you (you may be fine), but my for my wife.

And one last thing – Kenny Rogers was a dude, whatever you think (and if you don’t agree you are wrong)

Music helps heal my soul after some really bad weeks

I havent written here for a while, and to be honest am just scrapping what I did write a few weeks ago. I had this great piece about how live music was beneficial to my wife, after I had been able to take her to see the Manic Street Preachers do a small gig in Kingston ahead of their album launch.

It had been an afternoon show, and by phoning ahead I had secured seats in a roped off disabled area. This meant my wife had been able to get in early, and be seated ahead of the crowds, not having to worry about being knocked or jostled, and she had a great view. The band as always were amazing, playing a mixture of new and classics. Even some tracks (She Is Suffering as an example) I hadnt heard in a good few years of seeing them. It was perfect.

It was maybe the first live concert she has been to in over 5 years, so was a big thing. We had then gone to see our daughter the next day, having lunch out, and doing some sight seeing with her, so on Sunday night my wife was really tired, and didnt eat much when we got home (I scoffed a chelsea bun, as is tradition when visiting Cambridge).

I was in a meeting at 10 on the Monday when I received the first call from a mobile I didnt recognise. It took to the 6th or 7th call before I excused myself and called it back, realising that the call wasnt likely to be someone selling me insurance. It was my wifes spanish teacher.

She had come to our house to give her regular lesson, and when she arrived had heard my wife calling. She had fallen in the hallway, and was lying in a pool of blood. Luckily she was able to get to the door, and let the other lady in, who had called me and an ambulance. I arrived in ten minutes, to my wife sitting on the floor by the door, a towel on her head, cushions supporting her, and a lot of blood on the hall floor.

She had got dizzy while cleaning up in the kitchen, and coupled with her very low blood pressure, had fallen face first on the floor, basically landing on her forehead. It is amazing how much blood comes from a head wound, especially from someone who is on blood thinners. I managed to tidy up, while her teacher sat with her (the last thing we needed was the cat walking through the mess and trailing it over the house), and we were lucky an ambulance arrived within 30 minutes. Not for the first time I am thankful for the NHS.

I wont go in to the full details of the rest of the day. Needless to say there was a great deal of sitting around, and tests, uncomfortable seats and beds, before we were able to get home. The cause we think was the very low blood pressure, coupled with overdoing things the day before. Thankfully no other damage was done to her body.

It has been a big wake up call. I think we were getting a bit blase about how serious my wifes illness has got. Her body is tiny, and she doesnt eat enough to put the weight back on, and in fact barely enough to keep her weight stable. She doesnt have the strength to be safely around the house on her home most of the time. The chance of her (rightly) exercising her independence and determindly doing house work leading to another fall is very high. I have talked about being worried about her being left alone (in fact almost a year ago https://mywifehascancer.blog/archives/879), but to have it brought to the surface so starkly is sobering.

It has taken four weeks for her to be getting back to normal (whatever that is). Her head has permanent Harry Potter style scar. I have worked from home, she has stayed with her mum, and her mum has stayed with us. We just sit waiting in case she needs anything, listening out while she has a shower.

We have an alarm necklace thing on order, one of these things that will go off in the event of a fall, and automatically call me or the ambulance. They are marketed at the elderly, but really should also be aimed at younger terminally ill people as well. I will feel worried when I leave her alone for a while, but will have to get on with our lives somehow.

Mentally it took a toll on me. I feel guilty admitting it, because my wife had things much worse, but I think it was a week to get over the the trauma. Coming home to a pool of blood, and another hospital trip is not easy, and my stress levels went through the roof.

I am fairly sure I have been suffering from mental burnout, as I really do struggle to get motivated, feel tired and am irritable. I am trying to address this now. I journal in the morning each weekday, get my thoughts on paper, and am trying to put my phone away much more. I am trying to do more exercise, which has been tough when caring takes alot out of me as well. Balancing getting up early to do a spin bike session, with getting enough sleep means one or the other sometimes misses the mark. But I have to maintain self care, something I have not been maintaining. I have focused on my wifes needs and caring for her, neglecting myself. After all, I am not dying of cancer am I?

But this is foolish, and the place my mental health has got to means that I cannot look after her effectively, I cannot do my job effectively, and I am spreading myself too thinly. No one wins.

Which is where the music comes in. The Manics helped us both before this all happened, and this last week I had tickets to see the Levellers play in Guildford, doing an acoustic show. It was great, and just what I needed. I feel lucky to have some friends to do things like this with, because I miss being able to do them with my wife. I really miss dates, and sharing a bottle of wine, and weekends away just the two of us, and seeing our favourite bands. This has all been stolen from us, and every single day of my life, my chest hurts with the pain of wanting these things back. The hole in my body feels so real, and so large that it can overwhelm me.

There is a song by the Levellers that always hits me. Julie tells the tale of young woman, living a really tough life, and the line that gets me is “She felt alone in a crowded room, cries when she heard a happy tune”. I have not experienced anything that this poor girl does, but I can understand those sentiments.

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Day in the life of a carer

I wanted to talk a little about what our day can look like. This isnt meant as a whine, or a moan, but to try and show what has to be done when someone in a relationship is terminally ill and struggling.

This will be different at the weekends and weekdays, but a typical weekday will start at around 6am, when I get up. My sleep will have been broken, because my wife is a light sleeper and so will have been disturbed by me breathing, or moving in the night, gotten frustrated, and woken me up. So we both wake up grumpy. We have tried to remedy this, by me sleeping in the spare room, but that feels a little like we are giving up on our marriage, plus the bed is slightly too small for me.

I will head downstairs, having collected the first batch of washing to put in the machine. By getting up at 6, I have the time to do one load and put it on the airer before I need to leave for work. I can then put another one on, to then sort when I get home. My wife can put washing on, and get it out of the machine, but she does not have the strength to take it upstairs to hang out. Or even bring a load downstairs.

I will then make coffee, and empty the dishwasher, whilst waiting for our cat to wake up and demand food. If I am lucky she will consent to a cuddle, but this can be a rare event, as she will often prefer to howl at the darkness outside (dont we all!).

The first cup of coffee then can be taken while I have a few minutes to try and set my mind for the day. This either takes the way of doing some meditation, or doing some writing. There isnt enough time though to do a great deal of this. I do prefer the early morning when everything is quiet, as I can have some time for me, which is a rarity during the week.

After the 9 years of this whole journey, my mental health is in pieces, and this early morning moment goes a little way towards settling me. It doesnt do a full job, I feel nothing could.

I can then get in the shower, and get our son up. We will then have breakfast together, before I take my wife her cup of tea, and the first set of tablets. We have a tick list, and a box full in the kitchen cupboard, with a carrier bag full of spare tablets in the garage. We have to put in a new prescription every three or four weeks for a new supply. Thankfully in the UK, cancer means you are medically exempt from paying for prescriptions. Thankyou NHS.

I will leave my wife in bed (despite being concerned around leaving her alone https://mywifehascancer.blog/archives/879), and drive my son to school. This is easier now that my daughter is away at University, as I only have to make one stop before the office. I say one stop. If there are any groceries needed, I will stop en route and pick them in the morning.

My office is only 15 minutes from home, and so if there are any concerns I can get home to help my wife. I will pick up my son after school, and we will be home by 6. My wife will be trying to make the tea, and usually manages it, so I will finish it up, and serve.

To stave off the boredom my wife will have tried to do some things during the day, whether having a friend round, or having a Spanish lesson, or tidying up, but the smallest thing will tire her out for the rest of the day. After we get home, she will most likely collapse on the sofa, and stay there for the rest of the evening, covered with a blanket, watching quiz shows. She will eat something, which has to be before 7.30, and has to be reasonably light.

Food is not going down well for her right now, and meals will get stuck. If we are really unlucky, her evening meal will cause her to be sick, but usually it will take a bit of time to settle. Whilst she recovers, I will tidy away the dinner stuff, set the dishwasher, wash up and sort any remaining laundry she will have left by the machine. I will then get any other jobs done that require attention around the house.

This will include trying to fix things that may have broken during the day. My wife has a lack of peripheral vision following her stroke (detailed in this early blog post of mine https://mywifehascancer.blog/archives/66. Alot of history can be found in these from 2019). This lack of vision means that she may knock things, like a glass out of the cupboard, or a picture off the wall. Her lack of strength means that she may have started doing a job around the house, and yet had to give up, so I will go round the house and tidy things away, finish small tasks and so on.

My wife will be lying on the sofa all evening. I feel bad about the evenings, because she will have been on her own alot during the day, yet we cannot all spend the time sat with her watching the television. As detailed above, I will be doing chores, and then maybe catching up on some work, while the children will have homework to do. We may have 30 minutes or so before we go to bed to spend time with her. The balance is hard between trying to keep the house and lives going and spending time with my wife.

If we are lucky, we may have some social event. I love live music, but have had to cut down on the gigs I go to due to the expense and time. I may meet locally with friends every few weeks. I feel bad being out in the evening because I know how hard it is for my wife to manage at the end of the day.

My wife may be invited to meet people during the day, but rarely will she accept in the evening. We havent managed to do a ‘date’ night for years. Loud pubs or restaurants wont work for her hearing, and anyway the concern will be around food – something getting stuck and her being sick can happen at very short notice. We have really decided to cut back on that without having the conversation to say so – a victim of the cancer.

We have all the hard parts of a marriage, the admin, cleaning, tidying and worrying, without the fun light stuff of dates or a physical relationship. I cant ever see those returning.

Weekends will be different, as we will be at home not work or school. We do have to plan carefully what we do, as long car journeys are not great for my wife, so we have to leave early when going long distance to visit family. Local trips also need to be carefully considered to ensure that the place we go to has the right facilities. You discover that there is a great deal of planning when caring for someone with the physical and mental problems my wife has.

Hopefully this will give a snap shot of the life we lead. I know people have life alot worse, and as I said, I am not moaning here. This is laying bare the reality I lead, as I know many of our friends and family are shocked when they see the reality. They may only see the times when my wife has managed to get out of the house, after a day of resting, and will think every day is like that. Unfortunately not.

Thanks

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Assisted dying – thoughts from the perspective of a terminally ill patients carer

It seemed a momentus day in the UK last week, when parliament voted in favour of the first reading of a bill on assisted dying https://www.theguardian.com/society/2024/nov/29/mps-vote-for-assisted-dying-in-england-and-wales. This is the first step in legislation that will allow terminally ill adults with less than six months to live to be given the right to die. Theoretically this will give more choice for these people over how they die.

The debate brought out some horrendous stories from MPs from their constituents of people dying in horrible circumstances, experiences that no one should ever have to go through. This was countered by concerns over misuse of the bill, that could open the floodgates to less controlled usage of the guidelines. There were even the usual hysterical suspects talking about state sponsored killing.

These are my thoughts, coming from the perspective of the carer of someone who has been given a terminal diagnosis. Straight up, I suspect as a family we may have been close to being under the regulations at some point. My wife was given a 12 month diagnosis in her first few months of treatment, and was later hospitalised in a coma following adverse reactions treatment, so could assisted dying have been pushed towards us at that stage?

How would we have felt? My wife has been in some pretty desperate situations, and when in her coma was struggling to get back to life. She had a stroke during the recovery, putting her in an even more dangerous place. Would the endless pain, and seemingly endless unconsciousness have led to me having a conversation in a deserted corridor with a doctor, reminding me of this legislation?

In my tired and emotional state, worried about her ever regaining consciousness, wondering whether she would ever have a quality of life, would I have agreed, thinking it was for the best at that moment in time? As far as I knew, she would never recover. I vividly recall pacing the streets during breaks when my mother in law sat with her, not knowing where I was going, not sure what I was doing, not even sure of what was happening, but knowing I trusted the doctors to get her back. Would I have trusted the doctors when they said assisted dying was the best way forward?

But now she has made a recovery (I cannot say full, as she still has issues caused by her darkest days, lack of eyesight, food intolerance, and hearing and cognitive problems). A decision to end her life would have meant she and us would have missed out on so much we have managed to do in the last few years. I am less of a risk taker (I’m not even sure that is the right phrase here, but I will go with it), and I would have been inclined, unless told otherwise definitively, to leave things as they were. I couldn’t have made that decision.

I didn’t even want her to have her peritonectomy ‘the mother of all operations’. I thought that was too risky.

So where does that leave my thoughts on assisted dying? As a carer, I feel there are still extreme cases that warrant it. The very end of life, where death is a given, and where the process will entail pain and suffering. Why should that person, that family, have to go through that process. One of the hardest things I have to deal with, is knowing the end is coming. I don’t know when, but I know we will reach that stage. But I cannot comprehend knowing the end is coming in a few days, and will be accompanied by pain, and screaming and suffering. Those are the circumstances for assisted dying.

Which brings me to my next point. For this legislation to work, then the care given at the end of life has to be the very best. This has to have the very maximum funding it can as called for by some MPs. (https://www.theguardian.com/society/2024/nov/30/palliative-care-assisted-dying-vote-layla-moran-diane-abbott). The nurses who work in this form of care are the best of us, and need to be supported so they can give all the care and loving patients need.

I worry that in the UK, this bill wont be implemented correctly. The way our parliament works, the amendments will have a political edge (we have lots of culture wars type of MPs, who will say this is state sponsored killing, using anything to attack the current government), when what the law really needs is really tight legislation to work properly. There are circumstances where the end is coming, and patients need this type of help, but we have to make sure there is no avenue for abuse of the power it gives.

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Turning 50 in the shadow of anticipatory grief

Turing 50 has been good yet strange in equal measures. My wife also turned the same age two weeks before (so for that period I was claiming to be a decade younger….), and in light of that the focus has been on her.

It is amazing to think that she is still here to reach this milestone. She has endured some terrible things over the last 8 years, and still does, yet is managing through (I think) shear willpower to keep on. She is skinny as a rake, has very little stamina, and has problems with food, drink, noise and her vision. I honestly do not know how she manages it.

We met up with some of our oldest and closest friends last night for a celebratory meal. I drove, just in case we had to make a sharp exit, but we managed to stay the entire evening. It was great, everyone in high spirits, especially as we hadnt all been together for a long time. My wife was inundated with presents, and felt really spoiled.

I sometimes feel on the periphery a little though. I have talked before of feeling jealous of people. I see folks going about their day, and I know I can not have what they have, that my life as a carer and husband to a terminal cancer sufferer restricts my and my families life. And I feel that when meeting with our friends. I know some have hardships, and we help each other through lifes problems, yet the knowledge of what my wife and I are facing can sometimes be too much to bear.

I have spoken of what happens when the anticipatory grief hits (https://mywifehascancer.blog/archives/869), and this can manifest itself in many different ways. I feel listless, and have a real lack of motivation. I find I dont enjoy the same things I used to. I cant finish tasks, and struggle to start new ones. My focus is shot. The many years of dealing with this have destroyed my mind. I cant conceive how may wife copes.

I’m pissed off because I want to try and better myself and try new things, but cant get started. I want to do something with my life, something that isnt just the job I do, but always feel I have this hand we have been given hanging over me. We cant escape and make things better.

An example is that I went on a business trip last week. I came back motivated, but stepped through the door to a long list of things that needed doing, and a stressed wife who had been worn out by her mother being here to help. The few days I had used to gather my thoughts and try to reset my brain were blown away in minutes, and I could feel myself being dragged back into the swamp we live in. A thick soup of non stop problems and stress.

I realise that often I come across as moaning about my life, when my wife has it much much worse. I know that fact, and that kills me. Sometimes I dont know where to go when I feel down, as my companion in life, my ‘soul mate’ has things a million times worse than me. Every conversation will automatically go back to how she is.

So, turning 50 has been strange. From feeling on the outer circle of a get together to celebrate my birthday as well as my wifes, to thinking that my life is getting away from me very quickly, and I have no control over where it is headed.

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The challenges of travelling with terminal cancer

It has been half term here, and as my wife and I are both celebrating our 50th birthdays (mines later this week so there is still time to send a present or buy me a pint, wink, wink) we managed a few days in Madrid and Cordoba, before she and my son visited her Dad for his birthday. Our daughter is now at Uni, so sadly had to miss out.

Madrid was good, reasonably cheap, and plenty to see. I loved the Real Madrid stadium tour, especially seeing the old kits, and trophies. The stadium feels compact inside, but the seats head up quite high. It was very impressive, but not sure what it would have been like the next day when they lost 4-0 to Barcelona.

The boots below belonged to Di Stefano. I suspect modern players must be thankful for changes in technology judging by these. Even my thirteen year old son knew who they belonged to, I am glad he knows his football history.

I also enjoyed the Prado museum – I was keen to see the Bosch and Goya paintings, but everything else was amazing. My favourite is Saturn by Goya, painted late in his life, when he was in his black phase. This shows Saturn devouring his son, fearful of being usurped by the child. It is a terrifying image, but one I find fascinating. Not sure if that says more about me than it should. I now have a copy on my office wall, to remind me as I hit 50 that younger people are always coming to take my place. I wont eat them though. At least not all of them.

We also caught a bullet train to Cordoba, which was phenomenal. So quick and comfortable. Plus drinks on board were cheap. In fact, the whole trip showed how pubs and bars rip us off here in the UK- 3 euros 50 for a glass of wine, gin being poured by sight and beer in a can at the train station for 2 euros 35. A great way to relax! The view was fabulous, and the ease of getting on and off was great. Nothing like the train service in the UK. Even having three cases and only two of us able to carry them wasnt a hassle.

Cordoba has plenty of Roman sights, and a UNESCO world heritage site of a mosque and cathedral, while we also went to see the horse display. I was a little underwhelmed at this, however did enjoy the cathedral. It was a massive complex, with history going back centuries. I loved the Roman ruins dotted around, even the remains of a villa under our hotel.

So it was a fun trip in the most part. But the main thing I want to address is how tough it can be for us as a family to travel, and specifically the challenges of travelling with terminal cancer. And I get that this sounds like whining from someone in the priviledged position of having been able to travel and have a holiday.

I have discussed before about things we have lost (https://mywifehascancer.blog/archives/615), and travelling is one of them. I used to love exploring cities on foot, finding hidden gems, spending time at cafes and bars with my wife. I now have to do this solo. The plain act of travelling to the airport, on the plane and the other end, even with assistance will mean my wife will be too tired to do anything for the first day.

A delay on the plane can mean her having to sit for longer, which causes major pain in her stomach. And we cant travel more than a couple of hours anyway, as travel insurance prohibits the destination. Insurance can be probitively expensive anyway, so we cant always afford to make a trip. The years before cancer we were able to travel far and wide, and enjoyed flying to Florida or the Far East, family events we now know we were very lucky to afford and make.

Eating out can be a challenge. We had a meal out, on her birthday, to a restaurant she had specifically chosen, only for something to trigger her and mean that there was a quick run to the thankfully close bathroom with sick down the front of her dress. It is humiliating and depressing for her. We then had the slow walk back to the hotel trying to guide her through throngs of people out for an evening, their tables full of food and drink, not noticing the terminally sick women being almost carried home. Everywhere we ate, we had to check the toilet location, ease of getting to them, the contents of the menu and the type of room and chairs.

The cost when on a trip is higher as well. We need to use taxis to get to places, otherwise my wife would not be able to go anywhere. Her walking amounts to a couple of hundreds yards in reality, before she gets over tired, so by using transport at least she can see things.

Anywhere loud and busy is out of the question as well. Airports can be a disorientating environment. Her hearing is weak, and she has no peripheral sight on the left side, so any location where people are milling around, walking fast and chatting, with music playing will be tough for her to navigate. Numerous times both her and abroad she has been knocked almost over. I have taken to standing fast and hard behind her, almost like a blocker in American football, using my size to get in peoples way. I am big and not afraid of getting people upset these days. They can put up with a bit of a delay to compensate for what my wife has to navigate.

I miss the days before all this. Sometimes you realise how lonely the world can be when you are unable to do much, and when travelling and visiting places here or abroad, I see how cut off my wife is. So many things out there that she cannot physically do, so many places she would love to visit but can through distance, lack of disabled facilities, even lack of comfortable seating (we have to take a cushion in a bag everywhere we go). These things are isolating and demeaning, and impact so many people.

Even at home she is isolated. Since she got home from visiting her dad, she hasnt left the house in two days, and spent alot of that time in bed. The rest of us can leave and do things, and really have to to keep our household moving. It is another thing that really isnt fair.

I want to finish with this tune. I am loving the new Cure album (see below), and this may the emotional centre of the 8 songs. A cry for a lost brother, this has really struck home.

Keeping Track

New music listened to:

  • The Cure have released their new album Songs of a Lost World, and I am loving it. Very like Disintegration, with 8 tracks of majestic melancholy music.
  • Julian Cope has released Friar Tuck – an album of similar songs to Skellington, and one that will fly under the radar. If you love him like I do, you will like it, but if you have lost track over the last two decades, I would advice caution.
  • At the opposite end is the new David Gilmour album Luck and Strange. As you would expect this sounds like late period Pink Floyd, which again is no bad thing.
  • Paul Heaton was the star of Glastonbury for me, and his stance on ticket pricing and fans is to be applauded. His new album The Mighty Several has plenty of sing along tunes, especially Fish and Chip Supper (or Chippy tea as my son called it)
  • Heavy Lifting by the MC5 is a sad addition to their cannon, following the death of their final two original members. I love the band, and this has its moments. A grower though I suspect.
  • Finally I am enjoying Pixies The Night the Zombies came – not as good as Trompe Le Monde (yeah, I think that is their peak), but continues their run post reformation.

Books Finished

Finally I completed the Greg Jenner book Ask A Historian. I really enjoyed the concept, and found some interesting titbits of knowledge.

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Coming to the end of the summer

We’ve had a fairly busy summer. We managed to get some time away, and went to Italy for two weeks. It was hot, and humid at times, but we had a great time. Lots of pizza and pasta, and as we were in Sicily we saw some of the places where the Godfather had been filmed, which was cool.

My wife managed to do quite alot, but got tired very quickly. She has also started having more frequent dizzy spells, often leading to sickness. These have eased towards the end of the holidays, but we still need to be careful (https://mywifehascancer.blog/archives/879).

These bouts of sickness do limit life – we need to be thoughtful about what we do each day, and know that a busy day will have consequences the following day. Family planning takes on a whole new meaning! I dont think at times that folk without experience of this disease are aware of the impact. Even a good natured friend coming over to see her can leave her exhausted and worn out, unable to think, let alone talk when the evening comes round.

My daughter is off to University this week. She achieved the grades to study engineering at Cambridge (this girl can!), and whilst being extremely beyond proud, I and my wife are also sad at her leaving home. I’m not sure how life will be going forward, though I know family pizza nights will be missing her rolling out skills.

The two of us walked the Cancer Research SHINE nightwalk, completing a marathon last week. I was in bits from almost half way round, but was dragged through by her shear determination. Really pleased we did it, and managed to raise over £2,500 for an amazing charity. And despite the blisters, and what feels like a ligament injury, I am considering signing up for next years event!

Today is a Monday, and as always I realise I am not a fan (maybe I am Garfield deep down). I suffer bouts of wondering why I am doing this, when everything is so hard. I am trying to use meditation as a way to help my mental health. It is taking a time to get fully into it, and I have relapses, but can feel the benefit immediately after doing one. I use the Peloton App, as they have a whole variety of trainers and lengths. My self doubt and feelings of inadequacy can be controlled this way.

Stepping away from social media is another positive step I have taken. The cess pool of news on X was not good, and I now just check every other day or so, limiting my time on the app.

It feels like we have had a great final summer as a young family, and all is about to change as my daughter goes away. I am also sure that other changes will be coming – my wifes last scans again showed small progression, which is good news as they could be getting worse faster. I am always aware though that this is small steps towards the end.

Keeping Track

New music listened to:

  • The Cure have released a new song ‘Alone’ – it sounds just like Disintegration, and is mighty fine.
  • Pearl Jam – Dark Matter (Great album, lots of big rockers)

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Sort your life out even with Covid

My wife has been recovering from her bout of what turned out to be Covid (described here https://mywifehascancer.blog/archives/887). Not sure where she got it from, but she had been in the hospital three times the week before.

When she was well enough to not have to be sleeping, she watched alot of the Stacey Soloman program about sorting out your house. And then has spent two days emptying her wardrobe and the cupboards, getting bags for the charity shop and selling things in Vinted.

It has been like an anti-nesting, getting rid of things. My parents sometimes joke about having to clear out things as they get older, to save me and my sister the task, and I worry that my wife is doing the same. I wonder if the Covid has made her think.

She is also getting very fed up. Not being able to go out is bad at the best of times, but this week has been amplified. And here I dont know what to do. I work full time, though have been at home this week. We then do some things at the weekend, but it feels like too little. Realistically she needs to be doing something every day, stimulate her mind, but with most people we know working, that is hard.

I have written before about cancer ghosting (https://mywifehascancer.blog/archives/582), and Macmillan also have some good advice on loneliness when suffering from cancer (https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/loneliness-and-isolation). I still feel that people forget about my wife, not intentionally, but everyone has busy lives. It is unfair for people to see her all the time. Dont get me wrong, she has some great friends who take her out every Friday for a coffee or lunch. This is great, and stimulates her. Then like today, I will be able to tka her places. We went to get her nails done, which after a week inside felt like bliss apparently. But I cannot do it by myself, as I have to keep on top of the childrens commitments, and work and the household.

She has also started getting bad nose bleeds. For someone on blood thinners following a DVT last year, these can take a while to stop, and she feels very dizzy afterwards. Despite this, the boredom means she is still continuing with the clearing and cleaning, which has led to instances like today where she decided to clean a lower kitchen cupboard and got overly dizzy, and nearly threw up in the sink. Luckily I was only outside, but it could have been much worse.

Her weight is really plummeting as well. Every limb is skin hanging off bone. She doesnt have much strength to cope, and gets very tired. You have to ask – is this the lead up to the end? I am not sure how she is going to replace the weight and muscle she has lost when she struggles to eat (despite the external help https://mywifehascancer.blog/archives/867).

Our daughter finished secondary school lessons this week, and only has the exams to go (https://mywifehascancer.blog/archives/875), so I am trying to keep things less stressfull for her, despite feeling overwhelmed. At times I feel that I moan about things too much (to myself mainly), and wonder what everyone makes of it. I hope they are sympathetic to my not being in touch, or not being reliable.

I feel so isolated from everything that is going on, and struggle to enjoy the things I used to. A change has to come, but I’m not sure what that change will be.

I have said before that the one thing I really find keeps me in place is listening to music. Unfortunately this week, the last member of one of my favourite bands has passed away, Dennis ‘Machine Gun’ Thompson of the MC5. They were arguably one of the most important bands of the late 60s, and this is a very sad occasion. So please,if yo do nothing else, click on the link below, and play the tune really f**king load, and Kick Out the Jams.

Keeping Track

New music listened to:

  • Pearl Jam – Dark Matter (Great album, lots of big rockers)

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I really wish my wife could get some good luck for once

It is a public holiday here in the UK, with Monday as a day off work. Yay! However my wife has been laid up with flu like symptoms since Weds / Thurs last week. Pretty much straight after getting her results and after the blood transfusion (https://mywifehascancer.blog/archives/882) she started with a sore throat, then has developed a cold.

She has barely been able to get out of bed. At least she has been eating which I guess is something. She feels awful, and doesnt look great. Her face looks even more drawn than usual, and she is looks really skinny, dangerously so. I fear that something as innocuous as a cold could be her downfall, as she does not have the strength to get over even a minor illness.

I worry alot when she is like this (as I have previously spoken about https://mywifehascancer.blog/archives/879). She can get downstairs, and still attempts to do things around the house, but the concern is how safe she is doing them. Additionally were she to slip while having a shower she could easily injure herself, and with her stick thin limbs I think it wouldnt take much for a serious break, which could precipitate a further decline.

My job thankfully is going to be based in the office close to home, rather than in London, so I am able to get to her if something happens. Seeing her spending days in bed is strange, but is almost how life for us is now. She has periods of being strong and able to do things (though not as much as before) then periods where she gets ill. Anything hits her more than other people.

I was thinking about how this has all changed our lives today. I went to the British Museum to see their exhibition ‘Legion’ about the life in the Roman army (highly recommended for any history buffs. Took about two hours to go round in total, with some amazing items on show. Some mundane every day life type things, some more exotic – crocodile skin armour anyone?).

The museum is near an office I worked in many years ago, so I took a walk by. The area had changed alot – more empty offices and it looked a little run down. But it made me think about our life all those years ago in pre-cancer days. How we were so lucky in hindsight, able to go and do things, enjoy our lives. We take things for granted, and forget how things can change on a sixpence. (Or in a hospital room surrounded by nurses https://mywifehascancer.blog/archives/40).

I feel now that we are adrift in our lives, floating and being blown by the winds of cancer, not in control. I am struggling to know how to right the ship, and get us back on course, and deep down am not even sure if we can easily do so. We are at the whims of the disease. I wish I could create some sort of anchor and get my and our lives back on track, but after so long it is hard to remember what is the track.

The cycle of illness, followed by a brief respite feels that it is shortening, and time between the illness is shorter and shorter. A feeling of circling round and round is hard to shake. I suspect that eventually we will hit a time where the illness doesnt stop., and that time feels to be closer than ever.

Keeping Track

New music listened to:

  • The Lemon Twigs – A Dream is all we know (Like the Beach Boys, great summery music. Walking over the Thames in the sun with this on brought a few minutes of real happiness)
  • The Libertines – All Quiet on the Eastern Esplanade (I was too old to really get into the Libertines, I had heard it all before, but they did have some good tunes when they broke through. This though feels more mature, and reflective. Run Run Run is great, and when you call a song Oh Shit it had better be good. And it is. Night of the Hunter is also really good)

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Scans, transfusions, marathons and Taylor Swift (title of your sex tape)

Its been scan week, and anyone on their own cancer journey will understand how stressful that can be. This stress was ramped up after a few weeks of my wife having some severe stomach cramps and pain that lasts for more than 24 hours.

She came home from staying with her mother over the Easter period, and was immediately in agony. She could sleep as she couldnt get comfortable, and said it was worse than childbirth. I was really worried it was a sign of a bowel obstruction, but thankfully it passed, and the specialists verdict is that some type of food aggravated the cancer tumours she has.

Getting her to scans was a regular planned operation.Mentally, as can be understood, she cannot easily enter the cancer hospital. The same clothes have to be worn, which are then cleaned and put away after the trip. She has a different phone cover, and wears no jewelry. She has to have a disposable water bottle. If we go in with her, we cant take a book or anything else with us, or else if we do, they have to be cleaned when we get back. Nothing from the hospital can come back to the house without being cleaned.

So to get home after the MRI and bloods were completed was a great moment. Time to have a shower and try and recover from the mental trauma. Until a call from the hospital an hour later to say she needed a blood transfusion due to low iron levels.

We managed to dry the wet clothes and get back for the matching process, and then I took her in for the transfusion on the Tuesday, the day after. Two days in a row was not straight forward. The transfusion lasted about three hours all in, and she did it. I dont know how, but she did it.

Her arms are now full of scars and scabs where needles have been pushed in, trying to find a vein in the almost paper like skin she now has (alot of the anecdotes in the Mark Lanegan book mentioned below reminded me of how her arms look. Bruised and torn).

Her legs are easily bruised, and take a long time to heal. She has a bruise from where she fell at new year on her ankle. The veins on her legs, which were always prominent are now more angry and swollen. The muscle shows, as there is very little in the way of fat sitting on her bones.

Her stomach is distended, whether through ascities or something else I dont know. Every so often when she has a food reaction, it will swell further, like a fully blown up balloon, hard and taut, painfull to see. If you were to just see that part of her body, you would think she were pregnant with twins due very soon.

Her face is even more drawn, as the weight hasnt come back. Hair is thinning, and her rings can slip off her fingers. It is harrowing to see at times.

However, despite all this, she managed three trips into hospital this week, and today had a call to say that while her cancer is getting worse, it isnt spreading as fast as it could. This is a win in our world.

I think the specialist thinks she is almost some sort of special case, defying the odds. She has said were my wife to present fresh now, she would be admitted, and on a round of treatment, but in our case it is a delicate balance. And so we can try to make the most of her being here.

The children are coping well. My daughter is weeks away from her final A level exams, and so there is some stress around the house, while my son is enjoying his schooling. He copes through watching football, and playing on his play station, while my daughter has a high fitness regime.

She even signed me up to walk a marathon as part of the Cancer Research Shine Nightwalk in September. I am trying to get practice in, as she is way ahead of me in terms of her fitness (this does tie in with my plan to try and get fit https://mywifehascancer.blog/archives/760). We will do it for my wife, and get through the night by my daughter telling me Disney facts the whole way apparently. My offer of discussing post punk and indie bands of the 1980s didnt go down very well (I was going to run through the history of The Fall and The Smiths for her, but I dont think 18 year old girls are fans, which explains my teenage love life).

The return of my wife from my mother in laws has made me extra tired, and I realised it is the stress and being on constant call that is wearing me out. When she was away it was a case of not being able to do anything, so I could relax. When she is home, I am always worrying, checking if she needs anything, trying to take on the lions share of the house hold chores, and I find after 8 years, it is taking its toll mentally and physically. Strange aches appear, and muscle strains take a while to heal, which doesnt fill me with confidence for September. This does seem to be a regular problem (https://mywifehascancer.blog/archives/772).

Keeping Track

Current weight – 111KG (the training for our walking marathon is not kicking in with weight loss yet)

Books finished:

  • The Plantagents by Dan Jones. Excellent history of the line of Kings from the post William the Conqueror time through to the start of the House of Lancaster. Fascinating and gory in equal measures
  • Sing Backwards and Weep by Mark Lanegan . The first autobiography of the former Screaming Trees, Queens of the Stone Age and solo singer who sadly died in 2022. It is a harrowing read of a man gripped by addiction, who even after playing music to thousands around the world with his band, still ended up living on the streets, shoplifting to fix his habit. Really honest and open.

New music listened to:

  • Taylor Swifts new one (cant remember the name, however the title track is very good and references Patti Smith which is never a bad thing)
  • Pearl Jam – Dark Matter (really enjoying this. Some great anthems and a proper rock record)
  • Paraorchestra – Death Anthems (Brett Anderson from Suede on vocals of some melancholy songs. Well worth a listen if you like the darker side of music)
  • Uranium Club – Small Grey Men (like early B52s, a funny lyric, quirky)
  • James – Yummy (continuing their late career run of top quality albums. Lifes a Fucking Miracle is a highlight)

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Still worrying about my wife being home alone

Ive mentioned before being worried about leaving my wife at home (https://mywifehascancer.blog/archives/688) and this weekend it was again brought to the forefront of my mind.

Yesterday we went for a walk, just the two of us, around a lake at a National Trust property. We did walk further than my wife has walked for a long time, but no further than alot of people will walk to school or their job.

She was exhausted at the end, looking gaunt and drawn. There is no wonder she is becoming more and more and house bound, as there is simply no muscle strength and seemingly no progression in growing the strength, despite all we try.

Additionally her eyesight problems meant that she was spooked whenever we encountered a swarm of little flies, as she didnt see them coming up on her. They were nothing to be worried about, unless you couldnt see and walked into them mouth first.

She managed a small amount to eat when we got home, but again by evening her stomach was painful and swollen. I’m not sure if this is any specific food stuff, or a combination of excercise and the impact that has on her body. I suspect the excercise element may be the one. Unfortunately it has been painful for nearly a week now, so there may be something more going on.

She wants to go away with her mum next month, and I just cannot see how she will manage it. I understand the need to look forward to something, but I also think we and she needs to practical and sensible. But the option is being stuck at home more, so what is the best course. We will try the hardest to ensure she can go away.

I may also miss out on a job move, as I cannot commit to being in an office that is further away from home. Currently if there are problems I can be back in ten minutes, but the proposal is to be in London which would be a train ride away, and I worry that that would be too far. Not for the first time, my career will take the collaterol damage of cancer. I shudder to think how many things in our lives have been destroyed and broken by cancer that we just dont realise.

My career does take second place, and that is how I want it – I want to be closest to look after my wife if need be. But sometimes you feel that people in your office dont appreciate the hard work that kicks in when I get home. An evening of lying on the sofa may sound great to most folks, but my wife is doing that every day because she has worn herself out doing a few domestic tasks around the house and has severe pain in her stomach. My second job happens when I walk through the door – caring for and making sure she is comfortable.

I regret the way things have turned out, and desperately wish they were different. For us life has taken a strange turn, and I get jealous of those people who have a seemingly ordinary life instead of the stress and worry.

I am worried about her being home alone. When I get a message to say she hasnt got dressed because waist bands will hurt her stomach I worry what is going on. She can be unsighted, and has been tripped up by our cat before, and so I have concerns about her falling and banging her head. And, to be honest, her limbs are so thin she could easily break something if she fell.

We are putting measures in place to protect her, but it is hard when someone has such an independent mind and spirit, and so is rightly reluctant to lost that. I dont know when the right time is to have the conversation and I really do not want to be the person who takes away that independence.

Thanks

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