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Day in the life of a carer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Turning 50 in the shadow of anticipatory grief

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

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

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

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

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

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

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

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

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

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The challenges of travelling with terminal cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

Books Finished

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

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Coming to the end of the summer

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

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Sort your life out even with Covid

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

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

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

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

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

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

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

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

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

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

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

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

Keeping Track

New music listened to:

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

Thanks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keeping Track

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

Books finished:

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

New music listened to:

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

Thanks

Still worrying about my wife being home alone

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

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

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

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

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

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

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

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

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

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

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

Thanks

Mothers Day croissants, a walk, but then more worry

It was Mothers Day here in the UK on Sunday, and so we tried to spoil my wife. We had presents, cards, flowers, and planned to go out for a walk in the country and then a meal in the evening.

However, plans are never straight forward in our house. The morning went well, and we had croissants of which my wife ate two – a big change from recent months. But the weather took a turn for the worse, and started raining quite heavily. When we finally did get out, the rain held off, so we could go for a walk at the local National Trust property. However, very soon it became apparent that my wife was struggling to walk very far. She managed a few hundred yards, before having to stop and bend over to ease whatever pain was hitting. We turned back.

The next stage of the plan was to have lunch in the small café there. They do light meals and sandwiches, cakes, that sort of thing, just a snack for the meal. My wife had a jacket potato with cheese, which came with a small side salad and coleslaw, nothing too fancy. She managed the child’s size as it was, and a mouthful of the coleslaw, something she doesn’t normally eat. Nothing too strange there. We had a lovely time, chatting despite the rain still hammering down outside.

After we got home, my daughter and I waited for a time to be able to go for a longer run. I have mentioned elsewhere that we have signed up for the Cancer Research Shine night-time marathon, and so need plenty of practice before September. We managed it, but did get very wet whilst out.

The evening we had booked a table at a small Nepalese restaurant near us to celebrate. The food isn’t too spicy for my wife, and it is one of her favourites, so is the perfect place to go. We can park nearby, and everyone enjoys the meal usually. I noticed throughout though that my wife was very quiet, and not engaging with us. She managed to eat a little, but not too much. This normally means she feels sick, but she didn’t make to go straight to the bathroom thankfully. We still made a sharp exit, as it was obvious something wasn’t right. The moment we got home, she pointed at her stomach, which was very stretched and swollen, a fact I hadn’t noticed under her jacket. She went straight to bed, while I sorted a hot water bottle and drinks. It must have been a reaction to the small serving of coleslaw.

It is frightening how such an innocuous thing can have such a big impact. We can try to take very precaution, and then get struck down. The rest of the evening she slept intermittently, and thankfully her stomach has gone down.

This reaction is a little worrying. My wife is very keen to plan ahead, and have things in the diary to look forward to, talking about summer holidays. However, I see yesterday, and her struggling with walking a short distance in the UK, and then having that food reaction, and I get concerned around trying to fly anywhere, with cramped seats, and then being somewhere hotter than the UK in March. We have managed the last couple of years, but her health is getting more fragile now. I would hate to be somewhere we cannot get access to the right treatment and care if she needed it (not doubting hospitals anywhere, but we would need to have access to her specialist). I don’t know how to say we should wait until she is stronger without her protesting that she needs the time to look forward to. But I really don’t see how she can travel anywhere that isn’t to her mums house. She can’t even make the trip to my parents which is only three hours by car, she struggles even if we had stops to get out. Siting in a chair for that length of time hurts her stomach too much.

This was made doubly concerning today when she phoned me to say she had had a ten minute bout of vertigo, having to cling to the walls to get to the sofa. She said she had been doing a lot of things, but this is something very new, and something we need to keep aware of. I have always been aware that her cancer is spreading, and am worried where it may head to next, and the main organs and brain have been big topics of concern. I’m slightly panicking now that we may see more of this. As I have previously said (https://mywifehascancer.blog/archives/688) I have had thoughts about leaving her on her own during the day. I was moving away from that thought, but am giving it serious consideration again now.

On a better note, a friend who is a trained nutritionist has been cooking some freezer meals for her, with the correct portions and contents. We were not able to do this ourselves on top of everything else, and hopefully this will help get the balance right. She hasn’t put any weight on yet, but fingers crossed it is just a matter of time.

My mind is messed up trying to process much of this again. Sometimes I feel we are making progress, and hopefully back on track to her regaining her health. Other times she has an incident like today, and despite protesting and making excuses, I can tell she is suffering. There is little I can do except ease things for her, and try to make her comfortable. I sleep in the spare room so she can get a good nights sleep, and try to ensure she has drinks and the right tablets, and hot water bottles when needed. Just typing this out makes me realise how far along this journey we are, and how serious things really are, and that is aside from looking at the wastage in her body.

I dread what is coming, despite having had so long to mentally prepare. We sometimes are a little blase about small symptoms, and I truely hope this latest stage isnt something we should pay more attention to.

One sad thing to mention is the passing of Karl Wallinger from World Party and formerly the Waterboys. A great talent has been lost.

Keeping Track

Current weight – 110.7KG (hopefully the walking practice will bring this down)

Books finished – nothing new

New music listened to:

Uranium Club – Infants Under The Bulb – very early B52s like – highly recommended

Thanks