Author: DF

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

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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

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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.

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My daughter has been offered a place at Cambridge Uni to study engineering (and damn right I will keep mentioning that alot), and today we went for an offer holders day. She got to look around the college, meet other offer holders, and get the feel of the place. We went with her, but with nothing formal arranged, we just had a walk around the college grounds, then headed for lunch in town.

It took a while to find somewhere to eat that would work for my wife. Like Goldilocks, the food wasnt right, or the chairs looked too hard, and it was a long walk to find a restaurant. We decided on Franco Manca in the end, having walked past it ten minutes previously. Frustrating.

The first table they offered us was upstairs, but thankfully they allowed us to sit on a larger table downstairs when I asked, and when the waiter saw how my wife looked. After the walk she was ashen faced, staring at the ground, and shuffling along. It was upsetting to see, but I was relieved they didnt make too much of a fuss about moving us.

The home truth of her strength was made starkly clear considering we were looking around the college our daughter will potentially go to, when we met at uni ourselves. The start of her young life, with all the possibilities, at the same stage when our lives had met many years ago. And now we are at a point where my wife has lost much of what she was at that time.

We headed back to the car, and collected our daughter, before taking 2 and a half hours to get home, where my wife headed straight to bed, worn out after the day trip.

I am not looking forward to my daughter going to uni, I will miss her. I am excited by the opportunity she has in front of her, but the house will be quiet without her here. And I am also very aware that there is always a chance that when she goes away, I will be left at home with only my son around. I hope not, but in reality time is against us.

So, a bittersweet day all round. Exciting, but tinged with concerns.

Thanks

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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

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My wife has had some problems with food over the last few months, and they have got significantly worse recently. She struggles to smell the cooking of many different foods, cannot have a plate that is very mixed, and even with all precautions may be sick at short notice. Eating out is really a no go.

We very rarely eat together as a family, which is a real shame. She can prep a meal while we are on our way home, but has to sit down in a different room when we eat as she is too tired, and the sight makes her feel physically sick.

This means she has continued to lose weight fast, which means she is getting tired easier. We may find a food combination that works one week, but the next week it will not work and vice versa. Meal preparation can be really tough, as we will not be able to plan for the whole family.

With the reduction in what she can tolerate, we have had to turn to outside help. We were trying our hardest to make food she likes, but I am not the best at coming up with new ideas, and don’t have the time to cook. Additionally myself and the children still like the favourites we have eaten before, which she has now turned away from, meaning we have to cook multiple different meals most evenings. We have had to call in the cavalry!

So she has spoken to a friend who is a nutritionist. This lady also had her own catering business, and is luckily for us planning on doing so again. She has offered to make, a semi regular supply of batch cooked food that will have the right balance and help with my wifes healing. Which is the biggest ultimate concern – if she isn’t eating properly, then her body wont recover.

I feel a bit of a failure – we have tried so hard to be self sufficient in most areas, but have now had to admit defeat. But as I said above, with the best will in the world I cannot keep doing this job. I dont now have the expertise she so vitally needs, and my efforts are possibly making things worse. As my wife said ‘You just don’t get what my body needs’. Harsh, but true.

This does seem another step along the road to having to have more permanent help in place – I have said before how I get concerned about leaving my wife on her own when she is weak (https://mywifehascancer.blog/archives/688), but in reality it is sensible to get professional help with aspects of her care.

Never be too proud as a carer, we can try, but it isnt possible to be the perfect partner, and asking for help is a sign of strength, acknowledging our own limitations.

Thanks

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Another stressful week or so in our lives. But first some good news, and the frustrations we have building. My daughter has been offered a place at Cambridge University to study / read engineering. How she has been able to get the grades and keep her focus on the back of everything is amazing. Hard work still to come though.

So onto the frustrations. We seem to have some good news, and then some bad will be just around the corner. Like the universe wont allow us to celebrate good things without throwing it back at us.

We had a great summer last year, before my wife was hit with a DVT in her leg. She recovered from that, and we had a good start to the school year, and my daughters 18th birthday, before our lounge ceiling collapsed. We then had a great Christmas, before having the gas cut off due to a leak during the coldest week of January.

So was did the universe decide would be our karmic retribution this time round?

We had to go into London for my wifes meeting with her cardiologist. She hasnt seen him for a while, so was hoping he would cut down the tablets. It was a long trip, so I went to help her – it would be doubtful she could make the walk from station concourse to taxi if necessary. The tests went by quicker than expected, and we even managed to grab lunch together, which made a real change.

Then the consultant was running late, before giving us the news. He had seen something on her heart x ray, what appeared to be a clot on her left ventricle. He even showed us video of it flapping about. Bugger.

So after the weekend we were able to go get a heart MRI. The appointment was at 7.30 in the morning, in Fulham. It meant an early start, leaving the children to get to school on their own. Luckily we made it in time, to what felt like a deserted hospital.

The MRI took nearly 2 hours all in, and my wife had to lie really still for that time. This was a struggle with her back and the lack of movement did hurt her. She also had to have contrast, which meant her kidneys were in pain later on.

When finally she was out, she looked like she had been through the wringer. Not happy, and shuffling along. We got straight in the car and on the road to get home, where she headed in to the shower before crashing on the bed.

The results came a day later, in a rather chaotic meeting. Whilst being very stressed, the regular doctor was away, and his stand in hadnt read the notes properly, so was trying to catch up the whole time. It was embarrassing, if it hadnt been so serious for my wife. They had seen that the left ventricle was not a clot, but they did see a clot on the right pulminary, so will have to change her tablets to deal with it.

Thankfully the silver lining was that there was no rush to go into hospital so we await for her next prescription to arrive. No urgency seems to be good news. She is feeling tired, and a little breathless at times, but that isnt any different to normal.

She is worried, obviously, as am I. I feel very down about the situation right now, after some time of being positive. It is hard to be motivated when things seem to go wrong so soon. It feels like a very tough time again, and that we are on a downward slope.

My wife looks very frail. She is still losing weight, despite trying to eat, but her limbs look very thin, contrasting her slightly bloated stomach. She doesnt get out very much, and is finding things hard to deal with. Also having to rush to the toilet to be sick isnt fun.

I’m not sure how to end here. I’m feeling very unsure about the future right now. My wife wants to plan summer holidays, while I now she cant walk more than a few hundred yards unaided. I feel that our future is being boxed in, and that we are being trapped (caged as I said before https://mywifehascancer.blog/archives/851). It is very easy to fall into depression after facing 8 years of the stress and worry, along with numerous hospital visits. Hopefully things will pick up in the near future, even if the long term future is not rosy.

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

Thanks for reading, and if you like what I have written, maybe consider giving a tip in thanks. You can give tips two ways – either click on the button below, or on cash app if you have it – http://cash.app/£mywifehascancer.