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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)

The first school carol service of the year

Tonight was the first school carol service of the year, at our sons school. He stayed in and was fed there, while my wife and I were to go for hopefully mince pies and then the service in the chapel.

It had been a stressful day before then. My daughter was having an interview to try and go to Cambridge Uni, her big ambition being to study engineering (Yay, go girl!). But the first session was quite tough and led to tears. Thankfully the second one was better, but we wont find out until January.

My wife had been home with her as she dialled in remotely, and as it was a cold day had made a spaghetti bolognese, a family favourite. We sat down with plenty of time to go. However standing up cooking takes alot of energy from my wife, and the smells and sight of the food means she often does not eat.

Well unfortunately today, it was worse than that. Her meal bounced, very rapidly. She looked awful, ashen faced when she finally came out from the bathroom. Sadly this has happened so often that the children know that we just have to wait for her to come back rather than going to try and help.

This was ten minutes before we were supposed to leave for the mince pies and carols. We were already cutting it fine, as we knew she wouldnt be able to stand and then sit on probably uncomfortable chairs for an hour or more, but now the pressure was really on.

And this is where another unfair aspect for my wife comes along. She wants, nay should go to things, and why should she be excluded? But the world doesnt make it easy. Ideally she needs us to park in a disabled bay close to where we are going, however by deciding that she cant spend too long at things, these spaces will probably have gone. So we have to either go earlier, or walk further, both of which will make things worse for her.

Her eyesight is bad, and she stuggles with lots of people around, and so again going late to events means that the ideal seat for her to sit at will be gone – prime viewing space doesnt always get held. We dont like to make a big fuss, especially at school events, for fear of embarrassing the kids, and so dont ask for seats to be saved.

Luckily tonight, despite the traffic and the tea not staying down, we made the carol service, and she managed to join in with the hymns. It was a lovely way to kick start the Christmas period.

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We went to see the Christmas lights of old London town

My wife made the suggestion yesterday to go into London and see the Christmas lights. With her blue badge, we get free parking at the station, and a discount on a family ticket, which made the trip a little more affordable.

When we got there, the decision didnt seem the smartest one. We knew there was a march for Palestine going on, and it was the day after Black Friday, but we really under-estimated the crowds. It was rammed. We got off the train at Charing Cross, and found the Strand closed to traffic. Despite the march not heading that way, the amount of people was quite something. My photo doesnt do it justice.

My son gets quite anxious around crowds, so this wasnt getting off to a good start. The other impact was that we could not get a taxi for love or money. No cars, no cabs, nothing. And the plan had been to get a taxi to take us to some of the hotspots, and save my wife from walking.

So we had to walk, through Leicester Square, along Regent Street and to Carnaby Street. We had to take frequent breaks, but even so I could see my wife becoming more and more laboured, head down, face drawn, colour draining fast. This was not what we had planned. A stop in a coffee shop for a restorative latte helped her, and we got along Regent Street, seeing the amazing angel decorations, then into Carnaby, where the theme was the universe.

You can see the people we were dealing with here. It was hard with working eye sight and hearing, but my wife was really finding it hard. Since her stroke she doesnt see anything down her left side, and when people are pushing into small gaps, and running along quickly, she wont see and was banged into a few times.

Oxford Street was worse (no photo I was worried about getting my phone out too often). It was like shoulder to shoulder along this road, and now I was getting worried about the trip and the crowds. I couldnt keep an eye on both children, and guide my wife along and watch where we were trying to go, and keep an eye out for any dodgy looking folk. It was very stressful.

We ended in China Town, a tradition for us at this time of year. And there were queues to get into every restaurant, even at 5 .30. My wife was desperate to sit down, and so we ploughed on to the end of the road, eventually finding a small place with only a five minute wait. The food was amazing, but we here saw the other problem of being out with someone disabled.

The tables were close together which I could see was making my wife worried as she is still scared of Covid. But also the toilet was down a steep stair case. Not ideal for someone who has eating problems, and can be ill at a moments notice. You realise that even while doing something nice, there is never a rest.

We did eventually find a taxi, and managed to get back to our train, my wife being guided more than walking her self. It was freezing when we got home, so I lit the fire and settled my wife in bed, helping her to pull her leggings over her seriously swollen ankles. She managed to get into bed with a hot water bottle and a warm drink to try and bring her back to temperature. Hopefully the long term impact wont be too bad.

So why do these things? We try to maintain as normal a life for our children as we can. We have always strived to make their lives fun.

But also why should my wife miss out? Why should she stay at home and not see the lights, not enjoy a trip out? She is disabled not someone to be thrown onto the scrap heap and left in the house to be forgotten about. The memories of our trip yesterday will last for a long time, and will act to block out the sad memories we all have.

Yes, it was frustrating at times, but the frustration is at the situation, the inequality for disabled people, and at my wifes illness, not at her. I am amazed and proud at how she managed to cope with it all. She has always been determined (we call it her water ski face from when she tried water skiing on our honeymoon and was determined not to fall off), and that determination has been evident throughout her illness. She battles through everything, long term incapacity, comas, 12 hour ops, and to be able to still walk through a heavingly busy central London is an inspiration to us all.

We are attempting something similar today, visiting RHS Wisley to see their lights. Some more of the determination will be evident I’m sure.

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Revisiting last new year, and thoughts of 2023

Its only November, but we are already starting to visit Christmas Fairs, and get present lists from the children. We are seeing friends to start celebrating the end of the year (December gets too busy to do these things with everyone). And inevitably my thoughts are turning to last New Year, and a conversation I had after midnight with two close friends.

One friend hadnt seen my wife for a while at that point, and had been visibly shocked at her physical appearance, and her health. She was really upset by the sight, which shook me and my other friend. We had a long chat over a few bottles of wine post midnight, where I filled her in a little on the previous few months. We also discussed the future.

My wife had gone to bed early, got up for midnight, and then gone back to bed. I remember finding the evening really tough, as our friends in couples looked really happy, while I was worried and unable to enjoy myself. It was the first New Year with that group of friends where my wife had not been able to last the whole night. She hadnt been able to join the meal, as her eating was also a struggle.

It felt really unfair. She wasnt able to partake of what should have been a fun evening. I felt we were disassociated from the festivities. And the inevitable discussions about the forthcoming year were hard.

My comments over that bottle of wine (or two) were that I didnt see my wife lasting until Christmas. Over the previous few months she had deteriorated and her strength wasnt good. She was struggling and not eating very well. Our friend burst into tears, saying she couldnt believe it, but honestly at that time, I couldnt see how my wife was strong enough to last another 12 months.

Yes, she has been through a great deal of tough challenges, and overcome them, but I had a feeling that her strength was running out, and the cancer becoming too powerful.

I write this now from a different viewpoint. Despite another hard year, she will be here for Christmas. I am quite frankly amazed as always at her resolve. She hasnt had any further treatment, thank goodness, but has managed to keep the disease at bay. We will be able to celebrate with her, and she will be able to celebrate with our newly born nephew.

The disease has spread throughout this year, and her strength is less than before, weight loss obvious now. But we have always wanted our wife and mother to be with us, so what more could we hope for. We are trying to embrace a more holistic life, my wife doing alot of meditation and healing the mind which have had some benefit. Mind over matter is an old phrase, but there may be some truth in it.

I have written before (https://mywifehascancer.blog/archives/802) about how our relationship has taken a hit, and that is still true. My bitterness at the loss of my marriage is still here. However, we and especially me have worked harder recently to try and improve things. It isnt helped when my wife is such a light sleeper and I snore, or when she gets tired and cant hear or forgets things, but I love her regardless, it is the disease I dont want here. We are doing more things together, attempting to bring ourselves back together.

It is very strange, as in this world you never know when a serious issue will suddenly come around the corner. We have had years where we were planning a holiday, only to have my wife in a coma the day before we were due to fly. And maybe that was where my thoughts last new year came from, a place of bitterness and anger, leading me to a pessimistic mind set.

I do have a depressive tendency, and the challenges of the last few years have made this worse. I dont look on the bright side, I see the worst outcome. It can help with planning in work to see the downside, but makes it hard at home when I always point out the potential risks. I have again written about this in the past, and it is a constant battle, daily causing me to have mood swings up and down, close to anxiety attacks and an inability to focus, feeling overwhelmed.

A few things help, excercise and friends being the main ones. I have resolved to lose the extra weight (https://mywifehascancer.blog/archives/760), which is taking a long time, and have met more this year with my best man from our wedding. We have rediscovered our friendship, which has been a great help for me (and him, he has his own problems). We have been out for drinks, and also to two amazing concerts (music being another thing that helps me). Earlier this year we saw Guns n Roses at Hyde Park in London, which was amazing, and then this last week we saw Queens of the Stone Age at the O2, one of my favourite bands, and another unbelievable live act. And it is them I will finish off with, a tune that maybe has a title describing the life of a cancer hit household too much.

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Remember, remember, the fifth of November

Every year we go to a Nov 5th firework display as a family. (For non Brits this commemorates the attempt by Guy Fawkes to blow up the Houses of Parliament. Kind of like remembering 6th Jan in the US by having a party). The only one we have missed was when my wife was in hospital in 2018, but even then we watched from the windows of the hospital. We alternate between one run by the scouts, and one run by the cricket club next to my daughters school.

Both are fun. A massive bonfire, lots of fireworks, mulled wine, BBQ (in the British sense – burgers and hotdogs). But this time of year is cold, and typically wet. Just recently we have had storm Ciaran, and so the ground was very wet underfoot, let alone plenty of flooded roads. And one of the roads flooded led to the cricket club where we had chosen to go.

And so that meant my wife decided she couldnt come along. She struggles with getting warm once she gets too cold, but has also developed a swollen ankle after standing alot. There could be no guarantee of her finding a seat at the fireworks, and the damp in the air would cause her to get sick.

But she was adamant that we should go (partly because we had bought tickets, and she didnt want to waste the money). I felt bad, but we also have to think about the children, and try to make their lives as normal as possible. The balance is tough. In the end we facetimed my wife, so she could see the fireworks, if not smell the smoke. It felt like the best option in the end.

I spoke in my last blog (https://mywifehascancer.blog/archives/802) about our failing relationship, and this was yet another example of her disease getting in the way of our lives. It is so frustrating, as she has been feeling better, but not well enough to partake in this. The fact we have to compromise over every aspect of our lives is really shitty, and feels never ending. However, I feel we managed to at least involve her here.

The ankle thing is worrying me a bit. She had the blood clot a couple of months ago, and has been on tablets, but the swelling and some pain in her wrists suggests that something is still not right with her circulation. It could be because she has started being more active recently, but we have to be careful not to be too complacent. If we have learnt anything in the last few years, it is that something innocuous isnt always as it first seems, and you should always get to a doctor to get it checked out.

I also did my weekly task of updating the tablet box, and printing a new checklist. We have some new supplements added to the list, and I brought in new boxes from the store in the garage. There is a bag in there, full of her prescriptions for the next few weeks. We then keep a small box with enough for the week in the kitchen high cupboard. There are 8 to be taken each day right now, a number that increases when she is on chemo. The checklist is vital for us to keep on top, otherwise with her mind sometimes running out of juice, she would forget some. I dont think it would have a big impact, but to be honest wouldnt want to risk anything at this stage.

So the weekend ended on a fairly typical note, completing jobs to prepare for the week ahead. My wife has a call with her specialist this week, and we are hoping for good news as always. It is also my birthday, so we are heading out to celebrate one evening. Hopefully the call can lead to a double celebration.

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How to fix a relationship?

A quick conversation with my wife brought forward some concerns today. She told me she is really lonely, and basically said I dont do anything with her. She said I dont talk to her, dont sit with her and so on.Mentally she says she is feeling better and wants to make the most of that, even if her body wont let her.

She wants us to try and get our relationship back on track. And I agreed, and am trying to think of ways to do that. But i am realising that I dont think it is possible. I’m not sure we have anything in common any more, apart from our children and living together. I want to be out doing things, but we cant do that together.

I struggle with the TV being on all the time, so am probably spending more time in other rooms not in front of the latest inane game show. I get frustrated with her hearing loss, and the requests to repeat what I said. I get frustrated with the feeling that whenever I say I am down, or under the weather, she will always trump it. Bad day at work – the response will be ‘at least you can go to work’. Frustrated on the roads – ‘at least you can drive, imagine what it is like not to be able to’. And i understand all of these things, which makes my anxiety and depression worse.

At times, all I want is some human interaction – a hug, someone to hold me when I feel down. But I worry that trying that with my wife will hurt her. The physical attraction has gone with the destruction of her body. The chances of any kind of sexual relationship has long gone.

And so I am now wondering what we can find to try and fix our relationship. How do we have quality time together when we cant go out on a date, or have a romantic meal, or even go for a walk? I just dont know.

We are now drifting along, barely talking, just existing in the same house. At times, even the very fact I am sleeping in the bed next to her means that she is disturbed, so I sleep in a separate room on occasion. How can a relationship come back from everything we have been through? What tricks can we do to salvage our love?

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What do you do when your world starts falling down?

We had another eventful few weeks. My wife is still recovering following her DVT and serious weight loss, and spends alot of time lying on the sofa in the lounge. Her food intake is really down, mainly through feeling sick after eating. This means alot of weight loss still, and she has very skinny arms and legs with an extremely swollen stomach are, where the cancer is.

She looks very frail and fragile, with her gaunt face, even when in clothes. Even after a short walk she has to pause, struggling for breath and trying to focus to ensure she isnt sick.

Then to top it off, our lounge ceiling then collapsed. I came downstairs at about 6 am to find water dripping from the ceiling onto the sofa. Luckily my friendly plumber called and by 7 the leak had been stopped, and a hole in the ceiling was letting nearly a bucket full of water out. This wasnt enough though.

At 8 that evening, I heard a cry from downstairs, and came down to this mess.

Thankfully (or not, depending on your viewpoint) it had just missed my mother-in-law, and similarly my wife had been safe. But there was broken plaster everywhere, damp all over the carpet, and it took an age to clean up.

A leaking toilet in let pipe must have been dripping for a long time. You could see where water had been soaked up by chipboard before heading onto the plaster board, and every bit of it was wet through. We borrowed some heaters and made it secure, and then waited for it to dry out.

It took a while, and the damp smell was horrendous. Thankfully the insurance approved the work, and we have been able to get a builder in to do the work. But you could see how far the water had spread across the ceiling as it dried out, yellow patches blooming all over. It was a very stressful experience.

This has thus restricted what my wife can do. She cant be in the lounge as the hole made it cold and slightly damp, and all our possessions from the lounge were in the other room downstairs, so she was stuck in the bedroom. At least the rest of us could go to school or work and get out. You realise how tough it can be when disabled and not able to easily go out by yourself.

Mentally it has been tough for us all. I feel at times that the world is against us, everything that can go wrong seems to go wrong. It is probably not true, but sometimes you would like to have a run of good news.

Coupled with a bad few weeks in work, my mental health has suffered. Motivation has gone, concentration has gone. It is like the stable foundation of home has been snatched away, and I am living on quicksand, never able to feel safe. My brain is fried – the damage on top of the last few years has properly destroyed something. I still paint a face on and try to make the best of the day, when really what I want is to be back in a time when my life seemed secure, when we had a future to look forward to. I crave that stability, and that hope.

I am sure that things maybe are not as bleak as I feel. The black dog on my shoulder says otherwise, and he is the one I listen to. It is hard to get out of the depressive mindset, but I am trying. I have a spin bike to try and get fit (following this post https://mywifehascancer.blog/archives/760) but need to keep up the motivation to do it. It is very easy to decide it is too cold.

I have also finally taken up guitar lessons, and am working my way through the easiest Beatles tunes. It is slow progress, but again I find it a good way to turn off my mind, relax and float downstream. Again the main problem is my motivation, and I am having to really push myself to not sit flicking through my phone rather than doing something productive.

Finally on a Beatles note, they have released a single based on an old John Lennon track. I really enjoyed it, and hope you will too

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We got our picture in the Daily Mail

Its been a strange couple of weeks. My wife has been recovering from her DVT, and it has taken alot out of her. She has lost quite a bit of weight, and is really wasting away. Muscle tone and strength are non longer there.

Her limbs look like skin hanging off bone, and you can see the bones sticking out of her back. It hurts her to sit down, there is nothing there, no padding. I worry she wont have the strength to fight anything that may come along. We are trying to feed her up, however she is still struggling with food, and eats like a small bird. A meal may work one day, and then make her ill the next. So hard to second guess and keep her healthy.

My mother in law wants us to talk to someone, and my wife has approached a nutritionist, but wont talk to the doctor or a hospice. I cant go behind her back, so am a bit stuck. We know what she needs, but when the food wont stay down, it is really hard for her to get the strength back.

On top of that, we then had the big news. An article in the Daily Mail, a national UK paper.

https://www.dailymail.co.uk/femail/article-12524989/Your-makeup-killing-like-killing-City-high-flyer-mother-two-Hannah-diagnosed-incurable-cancer-blames-cosmetics-enjoyed-childhood.html

We had known of a campaign in the national press regarding the asbestos angle, and when our lawyer approached us we agreed that it was right for my wife to do it. One of our aims has been to raise awareness of her disease. Whilst it is probably too late for her, it would be amazing to help save someone else.

So she had a long interview, and then the photo was taken in a session last week. The article is pretty much spot on, maybe one or two facts wrong, but not enough to change it. The headline is the usual tabloid sensationalist rubbish however.

We have had a few people comment that they never realised, which is frustrating that despite our best efforts people still dont know what caused her cancer. Even now we see and hear of people using talcum powder, with no knowledge of the issues we have suffered.

How am I feeling about it all? I struggle to keep on top of things, but think the article is useful for getting the story out. People need awareness, and if we can help one person, then even if it is too late for my wife, that is good.

The last few weeks with the DVT has been really tough, watching her waste away. Her muscle loss means that going out is hard, and she gets really tired. Our son caught Covid as well, so that was another stress. Work as well has been hard, but as ever I paint a face on and get on with things. I have lost interest in alot of my hobbies, but am forcing myself to do things, try and kick start the brain.

These days are like a day to day existence, struggling through to the evening, and then hoping nothing bad happens at night. I react to things, filling the role of both parents, whilst also being a carer for my wife. She keeps planning things for the future, but in my head I know that it is unlikely she can make them unless we see a major upturn in her health. Scans show small amounts of growth of tumours, but the bigger worry has to be loss of weight and muscle tone.

Some times I check on her, and she is lying on her back, mouth open, barely moving, and the thinness in her face can make her look like she has passed. I have to check her breathing to be sure. That is no way to be looking in on your wife, to ensure that she hasnt stopped breathing in the time you have been out of the room. I feel that is a very real possibility right now though.

On a good note, our daughter did the Cancer Research Shine night walk, and raised over £1000 for the charity, something to be really proud of.

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A not so happy anniversary, and the impact of stress

It has felt like a strange weekend here. It is a bank holiday in the UK, which means we have the Monday off work. The kids are still on holiday, so I took them to play tennis on Saturday while the weather was fine. It is also our 2oth wedding anniversary (29th Aug), so naturally there have been lots of memories flooding my brain.

My wife has had a small victory today, in that she managed to get out of bed and come downstairs. She has lost a hell of alot of body weight, and has very little muscle tone left. Her body is like skin hanging from bones, paper thin. We try to fatten her up, but I fear it is a losing race for us.

She also now has some aches and pains. Maybe more pains than aches. Her side hurts by the kidneys, probably a hip joint that sometimes goes out, an old complaint that predates cancer. More concerning is her leg pain, and we are watching to ensure it isnt a blood clot. With the lack of muscle, I would imagine that everything is struggling to work as normal. She had been able to get out in the car over the weekend, but it was a real battle for her. Slow and painful.

I really dont know what to do on a multitude of fronts. Firstly and foremost is the need to get her checked out, and if she get much worse we will have to do that. We have delayed wrongly in the past, and paid the price for that delay with a coma and eventually a stroke. But I fear getting her to a hospital, as that feels like another length of time before she could come home, and we dont want to lose her. I want to end this phase of our lives, but dont want to not have her with us. Unfortunately, that is not an option though.

I dont know where to turn to right now, because A&E can end up being stressful and slow, while the local doctors can be hard to get an appointment. Dialling 111 for advice will just result being told to go to A&E. Which means her cancer hospital, despite it not having an emergency department, could be the right place.

Second on my worries is the thought of getting some extra help with her. I wonder at what stage you should involve a hospice, and think we are too early for that, but it has to be considered. She refuses point blank to have any contact or interaction with the hospice we have been point in contact with, so that is a conversation we wont be having any time soon. I cant continue to look after her nearly full time, and hold down a job, and do everything else.

I feel I have all of the world on my shoulders right now. Trying to look after my wife and keeping her comfortable, whilst also trying to determine when to involve other people. Trying to keep our small family going, which is the third of my worries. I try to make the lives of my children as normal as possible, and help them live a good life, which does mean me being the one to do things with them most of the time. My wife was able to do so a bit over the summer, but with her bodily deterioration she cannot do much now, not without getting some strength back.

Sometimes there is so much hanging on me, that I become unable to act, and physcially and mentally stop. Faced with an overwhelming list to do, I wont do any of it, then feel guilty for not doing it when the paralysis ends, heading further down a depression cycle. I will get angry and frustrated with myself, and nervous about what I havent done. My stomach will become a ball of nervous energy, making me feel sick, and before you know it, I fall to inactivity again. Headaches hang around longer than previously, and I am constantly tired, despite however much sleep I may get.

I am becoming less able to enjoy things now. My attention span has been shot to pieces (probably a symptom of smart phones anyway), but my previous joys of listening to music and reading novels are not being done. I cant think of which album to listen to, and cant focus for long on a book. I desperately need to exercise consistently, but lack the motivation to do so.

Losing these elements of who I am has really come into focus on our anniversary. The man I was 20 years ago has gone, probably to the same place as the wife I have lost. The man I am now is a husk of who that was, married to someone who will likely leave us soon as well. The married relationship has gone, and I cant ever see how it will be back. My wifes body has been ravaged and changed beyond recognition, and whilst we still love each other, physical attraction has gone.

I have said before that cancer doesnt just destroy the person who has it, but it has a blast zone, like the front row at a Seaworld show. Cancer has managed to have the above impact on me, it has changed my happy go lucky children, has changed other close relatives. We care for my wife, and see the pain she goes through, and the stress and worry caused by that disease eat us up inside as well.

I’m not sure where we are headed this week. Friday we are travelling to meet relatives, but as this rate my wife struggles to go 5 minutes in the car, let alone over 2 hours. Firstly though we need to get her to a specialist and fix her back and leg. Hopefully this will be straight forward. My mind though knows it could also be the start of a hospital stay.

As an aside, the first dance at our wedding 20 years ago, was done to the following song. Seems apt to end here.

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My life is falling to pieces

Sometimes the anticipatory grief can be so strong, that I feel my life is falling to pieces and there is nothing I can do about it. I feel there is no element of control and I feel so helpless.

I have an aching hole in my chest, a desperation that wont leave. I cant concentrate or find motivation in work. I find I have lost interest in things I used to enjoy, and struggle to find ways to be happy. A couple of drinks can help, but then the effect will wear off. The same with exercise, the euphoric high quickly passes.

A further frustration is that I am fully aware that I need to find motivation in work, re-engage with hobbies, phone or meet friends, but find myself unable to do so. And that makes it worse. I get caught in a vicious circle.

On a regular basis this frustration can lead to tears, either in the car or toilets at work. I cry at the helplessness of our situation, the worry of losing my wife or the feeling of waste. Waste over the last seven years of my wifes life, and the waste of my life.

We are coming up to our 20th Wedding Anniversary, and this time two decades ago I would never have imagined this would be where we are. It seems so unfair, and pointless that this disease has struck us like this. Our hopes and dreams of that day, celebrating with friends and family have long gone, replaced with the hope of my surviving just a few months more. Where is the justice in that?

The next sentence may seem selfish, but I feel that my life is in limbo. I love my wife (I wouldnt have asked her to marry me if not), but in many ways I am waiting for the end of the situation we are in to be able to properly live my life. I am torn between wanting to move on with my future, and the greater need to have my wife back as she was.

I dont want to be watching her slowly decline and become more sick, losing weight and being ill. I dont want to have to consider taking her to hospital at the smallest stomach pain because it may be something more serious than indigestion. I want to to be free of our cancer nightmare, be released from the chains holding us down.

That is why I feel I am being torn apart. The different thoughts going through my head every minute of single day, of not wanting to be in this life, wanting to help my wife, worrying about my children, wondering what the future days will bring. It is impossible to process all of these thoughts, and at times my mind feels that it will explode.

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Why do I find life so exhausting as a carer?

I have recently had a couple of weeks off from work as the school holidays have started. This has meant being able to try and do some things as a family.

You would imagine as this was a summer break, I would find it relaxing, and in the most part it was. But I started to notice how tough each day was. I am usually in the office, so dont see my wife all day, but when you are constantly with her, there is so much that needs attention.

Watching to make sure she doesnt bang her head on the car door, protecting her on a pavement when other people are around. Being aware of when she is feeling sick, and unable to eat food. Making sure she has eaten today.

Even the mental strain of watching her slumped on the sofa or a chair, wishing we could do something else other than help her hold back nausea. The mental gymnastics of trying to keep the children active, while trying not to overtire her. Making memories while those memories may not be the best ones.

We have nearly hit 20 years of marriage, and that saddens me. Looking back the change in those years was at first great, but now feels ruined. Achievements and landmarks have a taint to them, cancer looming over everything. You build up everything, only for it to be snatched away cruelly. And not only taken away, but you are made to watch it all happen.

Sometimes I do wish for the end of this life. Another mentally tiring thought. I watch with envy happy families, and then see my skinny sick wife, and I just want this all to end. Where is the fun in my wife dragging herself somewhere, to painfully sit and watch as others partake in activities she cannot do, only to go home and straight to bed.

I feel we are in limbo, neither existing in our old lives, but also unable to move to something new. I have a feeling we may be entering those end times however. Mentally I have almost made my peace with where we are headed. I am not at peace with how we will cope. I have maybe just resigned myself to the inevitable. Watching how she has changed has done that to me. I said at the start of the year that I didnt see her surviving until Christmas based on how she was then, and she has only gotten worse physically. She has always defied expectations though, so hopefully I am wrong.

I also feel my wife has resigned herself to it. I havent been on the call with her specialist recently, so only know what she has said through the lense of my wifes notes. I can see how she is physically, and have also seen how she acting. I have seen recently that she has tried to pack many things in, as though she wants to experience certain things one more time. Trips out we have talked about for a long time have suddenly happened. Watching her favourite stage show again, where I saw tears in her eyes at the end. It feels alot like she is trying to do these things now before she cannot do them at all.

So are we entering the end? Maybe, and if so I need to find a way to get my strength up and try to get some rest, as I see only tough times ahead if that is the case. If I am mentally exhausted now, I cannot imagine what it will be like in the coming months.

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