Cancer - mywifehascancer.blog

Music helps heal my soul after some really bad weeks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The challenges of travelling with terminal cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

Books Finished

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

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Sort your life out even with Covid

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

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

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

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We all need to take a break now and then

This last week has been school half term holiday, and after the recent events (https://mywifehascancer.blog/archives/858) it was well needed. The school holiday means no need for the stress of the school run, and last week it also meant my wife and our son went to stay with my mother in law for the week.

In the days before her diagnosis and losing her ability to drive (recounted in this post from a while back https://mywifehascancer.blog/archives/66) my wife would take both children down to her mums by herself. Now there has to be a little more planning as logistically it means either me driving all the way, or meeting my mother in law and swapping over at the motorway services.

We have to be aware of the time in the car for her as well, because she gets back pain and stomach pain from sitting for too long. So it is a long morning driving and sorting her out, making sure she is comfortable and not in pain.

I always needed the break when they went away for a weekend in the past, and now even more so. I have the kind of brain that needs alone time. The strain of worry and the role of being a carer can be put aside for a short while, and give me time to try and reset my brain. It is a time of mental recovery for me, when I can meet friends, get some jobs done around the house, even blast my favourite music without having to wear headphones!

We all need this kind of break, otherwise we would go mad. The stress of daily life takes its toll, and relaxation is key. Regardless what pressures people face, everyone deserves the chance to step away from them now and then.

I never find the break long enough now. There is so much I would like to do, and the need for downtime is far greater than in the past, that five days doesnt work. Before I realise it, we are back into the routine again, and facing our battles. It is a stark reminder that the pressures and strains we are under will not go away, and are permanent. It is also a stark reminder that my wife cannot escape from constant pain, aching, food intolerance and tiredness. My selfish need to have some downtime cannot even compare.

Keeping Track

Current weight – 110.9KG

Books finished:

Matthew Green – Shadowlands – about lost places in Britain, either villages that fell off cliffs or were abandoned and so on. Very interesting.

New music listened to:

Ash – Race The Night
Captain Beefheart – Safe As Milk
The Cult – Under the Midnight Sun
Shed Seven – A Matter of Time
Bill Ryder Jones – Iechyd Da
BC Camplight – The Last Rotation of Earth
Black Grape – Orange Head
Kula Shaker – Natural Magick (not listened to their new music since the 90s, and was pleasently taken aback. Great tunes)
The Last Dinner Party – Prelude to Ecstasy (Baroque pop? Could be a number one album, and deserves it)

Thanks

Feeling like being trapped in a cage

I walked into the lounge on Sunday evening to see my wife sat slumped on the sofa. We had been out for a walk at a National Trust property (Polesden Lacey in Surrey), and whilst the rest of us had gone for a long distance, she had managed a short way before the wind and cold had forced her to stop.

So we had met her at the cafe, where we all got a small snack. She had a childs jacket potato with beans, which came with a small side salad and coleslaw. Fairly bland you would think.

But it was when I walked into the lounge that evening that I realised that wasnt so. Even this innocuous combination held a risk for her, and she had been constantly aware of where the toilets were.

We know that she has an intolerance to cooked egg, alcohol, and developing the same for spices. But it can also be the case that combinations of food can cause an issue, making her sick, or having the food stick in her throat. She can also get tired at the drop of a hat, one day fine, the next struggling to get up. It is hard to tell what causes it.

This must be so hard to deal with, never knowing if you will be sick at a meal, or if the food will go down well now, but make you ill later. It must be so draining to have to deal with that at every meal time.

It has really cut down the food she can eat to a real minimum, leaving very little options. She is also a vegetarian, but craves meat now and then, which messes her mind up, and is another issue to try to deal with. She feels she is missing out on so much by being unsure about how her body will react to food. She declines invitations to meals out unless with close friends, and always has an exit route.

It is like being trapped in a cage for our family. My wifes cancer restricts so many things. It has stopped us from going out spontaneously, stopped us travelling abroad easily, stopped date nights, and basically left my wife moving between the lounge and the bedroom, as even the smell of food stops her going into the kitchen.

Ive talked about being worried about leaving my wife at home alone before (https://mywifehascancer.blog/archives/688) and I still am. Not because I worry she will fall now, but because I worry she wont eat unless someone is there to prompt her. The food concerns mentioned above are mentally restrictive. I now worry that she wont be eating, or if she does eat, she is sick or something sticks in her throat, and no one is there to make sure she is OK.

Her weight has gone down again as well. She was light as a feather anyway, so losing more must be taking her down to dangerous territory. This brings the concern that she doesnt have the reserves to cover those times when she isnt eating, and will also lack the strength to fight any infection.

It is the season for colds, my son stayed home from school on Monday with a heavy cold and sinus problems, but he is 12 and can fight it with a day in bed. My wife on the other hand if she catches is, may take a week off struggling to breath.

His illness coincided with me visiting a different office my company uses in London, rather than the office I am normally in 5 miles down the road. I enjoyed the trip, and it will need to be a more regular occurance, but it also reminded me of a problem with that longer commute that ties into the above. Were anything to happen, I wold be at the mercy of trains to get back and help, not the potential 10 minutes I usually have. It also means me getting back later, and has a knock on to collecting the children, preparing tea and so on. All the jobs that my wife would love to be able to do, but cant always commit to without knowing what her strength will be on a day to day basis.

Trapped in her own cage, restricted to our house without support to leave, restricted in her food intake, often unable to help physically look after the children. Cancer has done this to her and taken away all of these things that most people would take for granted.

Keeping Track

Current weight – 110.7KG (possibly higher as I havent been on the bike with not having a hot shower)

Books finished – none yet

New music listened to:

Ash – Race The Night
Captain Beefheart – Safe As Milk
The Cult – Under the Midnight Sun
Shed Seven – A Matter of Time
Bill Ryder Jones – Iechyd Da (Similar in feel to the Michael Head album a couple of years ago that Bill produced)
BC Camplight – The Last Rotation of Earth (never listened before, but this is melodic and tuneful, really enjoyable)
Black Grape – Orange Head (always great to hear Shaun Ryder, Pimp Wars in particular is a highlight)

Thanks

Bloody hell, that was a freezing cold week ahead of the scan results

So we had another eventful week last week and the start of this. The Monday before last we were having smart meters fitted for our gas and electricity, against my best wishes, but required for our new deals. It saved us money, which in the current climate was a no brainer. Or so we thought.

The man came to fit them on a bitterly cold day, and to be honest didnt sound very convincing. I was work, and my wife was at home texting me, saying he wasnt filling her with confidence. Then he dropped a bomb shell.

During his tests to check our gas supply, he thought he had detected a loss in pressure. A loss in pressure meant a leak somewhere. And that would have meant turning the gas off at the meter, capping the pipe, and leaving us with no gas until we could get it fixed.

Now, my wife gets tired easily, and struggles to hear, and so I jumped straight in the car to come home from work and argue the point. ‘My wife is terminally ill’ I would say, persuading him to not turn it off. However, all his tests did seem conclusive, and I couldnt really leave gas leaking, especially when we didnt know where it was leaking from.

So he left us with no gas, which meant no heating or hot water, and a hob that didnt work. Luckily the gas emergency folk gave us some heaters and a hot plate, especially when they heard my wife was very vulnerable. This did mean we could spot heat the house, ensuring my wife was warm. I have mentioned before that she doesnt react well to getting cold, and having a cold house could have really injured her.

We had some hot water in the tank, and I thought the immersion would top it up, but it seems that was broken, so from Weds onwards we had none. A cold shower at this time of year wasnt fun, and the only to make it close to bearable was to have a heater in the bathroom, so the room was tropical. Not very safe though.

Our gas engineer friend was unfortunately away on holiday until the Friday, but did come as soon as he got home, worked out what to do, and then came and fixed it on Monday this week. So nearly a week of cold weather, and cold showers, during a time when the temperature was hovering around zero.

Oh and we had my mother in law staying as she and my daughter were going to see Moulin Rouge, a Christmas present, that by all accounts was very good. She was also staying to take my wife to her latest scans, which were a little traumatic with my wifes bad back.

She had to have an MRI, and as anyone who has had one will know, you need to lie still for 40 minutes, which wasnt easy with the pain she had. I stayed at home and made sure the house was warm when she got back.

The results arrived today, and they are a similar tale to recent results days. The disease is close to stable in some areas, but there is some small growth in the newer areas, including the liver, muscles, kidneys etc. My wife has already said she doesnt want any treatment right now, as she is in a good place, and there is no guarantee that whatever they give her will do anything. However she is concerned about these new growths, even if her oncologist seems calm right now.

I feel frustrated. I want the doctor to give us some definitive news. I feel like they are not doing anything, even though I know they are. By saying that we will scan again in April, I feel that we are still waiting, twiddling our thumbs. I see my wife, and she is very frail. Her arms and legs have skin hanging off them, while her stomach (where the main disease is) looks swollen and tight. She struggles for breath, and gets really tired very quickly.

She takes a long time to heal from the smallest cut, or bang. This injury she got at new year when she fell over is still not healed, and she has a bump on her ankle that alternates bright red and painful to touch.

I will admit I cried on the way home from getting the message about the results. After nearly 8 years post diagnosis, with the last few years, I feel so powerless.I see her deteriorating, see the daily and hourly struggles she has and I want someone to do something. Surely there must be someway that can guarantee to help her, some tablet she could take.

There isnt. All that we have is a slow death, marked by visits to see a doctor and the mental anguish of going into hospital, constantly in pain and unable to do most of things that she enjoyed doing 8 years ago.

How am I coping right now? My new years resolution was to try and prioritise my mental well being a little more than previously (https://mywifehascancer.blog/archives/829) and this has now been knocked off course with the gas problem and the strain of the scans. I feel at times that I have a limited amount of mental capacity to deal with things, and with caring for my wife, looking after our children, work and just the general household chores, I take a back seat. A good friend told me at the weekend that I need to do more, that I am suffering, and when I am suffering I cannot help my wife.

So I will dig deep and find the resolve to cope. Now the heating is back on I can start with the exercise again, and will use my time wisely. My wife and I are spending more time together watching box sets, something we used to do, and are enjoying being back together (Vigil series 2 was very good). We started to drift apart (https://mywifehascancer.blog/archives/802), but are starting to find each other again, which is easier when I am less stressed with everything.

I also have to change my mindset. Try to turn the negatives into positives. My wife has been given a few more months at minimum, and every month we have, we must be a month closer to a cure.

Even when my wife doesnt have active treatment, our lives are still chaotic and hard to navigate. We never know what may be around the corner, and that is what plays tricks with our resiliance and mental health. We have until late April now to make the most of the extra few months we have been given, until we hopefully find out we have been given some more months. Not just living waiting for the scans now, but we will start enjoying the extra time the doctors have bought us, and make the most of that gift.

Keeping Track

Current weight – 110.7KG (possibly higher as I havent been on the bike with not having a hot shower)

Books finished – none yet

New music listened to:

Ash – Race The Night
Captain Beefheart – Safe As Milk
The Cult – Under the Midnight Sun
Shed Seven – A Matter of Time (they got to number one – 30 years after Britpop! And it is a bloody good album, full of sing along bangers with big choruses)
Bill Ryder Jones – Iechyd Da (embarrassingly even with a Welsh wife I had to look up the spelling here. Nice and gentle, great sounding)

Thanks

Escaping with Sherlock and facing down challenges

A week of getting back into things. In the office, which has been much less stressful than at the end of last year. I ended the year covering a second job in a department that had been facing serious delays and issues, and for the six months I was involved, we were fighting a constant battle with auditors.

So into December I was not in a good place mentally, and really needed the break. I wasnt able to interact with anything at home, and wasnt really a good person to be around. I cant recall a time when I have been so stressed through work in a long time.

Even the times when my wife was in hospital I always coped better then last month. I was very relieved when Christmas came round.

My wife has been struggling a little with her bruised back following her fall at New Year. The chiropractor put it back in place, but it is still painful, with a cut that hurts as well. She is really finding it hard, and has been prone most of the week. This means she is majorly pissed off as well.

We did manage to get out to a Sherlock Holmes experience in Shepherds Bush in London (https://www.thegameisnow.com/?gclid=Cj0KCQiAtOmsBhCnARIsAGPa5ybk_Es8OyMw4PeWVMob5HVSZCUzeZTzgyNw5hxbnSpI5-Flmod-gEUaAooGEALw_wcB) . I can really recommend this, it was great fun, with the actors from the TV show on film, and some great recreations of sets from the show. As my daughter is Sherlock obsessed, this had been a Christmas present that went down very well. It ended with an hour long escape room, which we managed with only a minute and a half to spare. Very thrilling, and brain taxing for a Sunday morning!

The other focus for me has been concentrating on my resolutions (https://mywifehascancer.blog/archives/829). It is tough getting up to ride my spin bike when it is dark and wet, but I have been doing it. I think there has been some weight loss, but I will need to keep at it to really tell.

Listening to some new music has been much easier, and I have loved the Ash and Cult albums I have tried this week. Both anthemic and rocky, and right up my alley. I have tried again with Captain Beefheart, and prefer Safe As Milk to Trout Mask Replica. Though it might be time to give that album my annual listen.

The major thing stopping me reaching these goals though is the thought that ultimately none of my resolutions are going to change my situation. They are just ways to help me cope, and keep my brain occupied so it doesnt think about the situation with my wife. They cant and havent stopped the sadness that can creep into my daily commute at any moment, the jealousy of the healthy and happy looking couples I see around, when at home my wife is lying with an injured back, her legs getting skinnier and skinnier, veins showing through, with her clothes hanging off her. Getting fit and listening to new music wont change that.

She takes longer and longer to get over this type of injury, and to be honest get over any type of illness full stop. Her body is so battered, so bruised and broken that there is very little reserve available to fight things. I fear that any potential serious illness will knock her out very quickly.

There are scans this week, and results the week after, so we will see our new fate after that. I would wish for a cure, but that is a long way off I’m sure.

I always thought that my marriage with my wife was the one, our ultimate romance. I had never been great with women when I was younger, and so had been shocked and so happy when she said yes to marrying me. I never thought anyone, let alone anyone as amazing as her would say yes to me. Now I dont know what to do to cope with the thought of losing her, and losing my rock and stability. Both of us are scared silly at what we have and are facing, and there is no manual to help chart the path through. And for one of us it is a one way path only. Even typing that sets me to tears.

And so I keep on with my resolutions for 2024, trying to improve myself on the outside, all the while knowing that inside I am broken, and unfixable, but trying to paint on a happy smile and keep facing the challenges that still come. I said to someone last year that I feel I have a superpower that most people dont have, and really I mean that my wife has a superpower most people dont have, I just have some by proximity.

Her superpower is the ability to get out of bed every day and face down these horrendous, life changing and life destroying challenges, and still keep doing the normal things like Christmas and escape rooms and just cooking tea. This is a superpower that few people ever have to learn, and thank god for that. For unfortunately,this is one escape room we will not manage to beat.

Keeping Track

Current weight – 110.7KG

Books finished – none yet

New music listened to:

Ash – Race The Night
Captain Beefheart – Safe As Milk
The Cult – Under the Midnight Sun

Thanks

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.

Thanks

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.

Thanks