mywifehascancer.blog

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

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What happens when anticipatory grief hits?

I have written about anticipatory grief before (https://mywifehascancer.blog/archives/387), but wanted to put down some words on how what I can only describe as an episode can come along. I am trying to put my head in a better place, through exercise and journaling, but this morning, after doing my bike ride, I felt overcome with emotion taking a shower.

I got waves flowing into my brain, all at once, overwhelming me. It is impossible to focus and concentrate on one item, there is so much coming. Thoughts about what my wife has lost, the pain she is constantly in. The never ending issues she faces on a daily basis.

Thoughts about we have lost as a family, and what we are going to lose. Thoughts about how my children cope now, and how they will cope in the future when the inevitable day comes.

Thoughts about what I have lost, the lack of a partner, the loss of someone I love to just hold and be held by. The hole in my heart that cannot be filled, whatever I try to do.

The overwhelming kindness and support from friends and family that can never be repaid. The pointlessness of getting up in the morning, when everything you had worked for, everything you wanted can so easily and painfully be taken away.

How unfair life can be when someone who would only be there to help people, to look after people, is reduced to a husk of what she once was, reliant on people for so many tasks, fearful of eating regular food, fearful of any small bruise and ache and pain being a sign of the end coming. The way cancer has destroyed her body, wasting away until bones poke through, her swollen stomach and dark bruises.

This will all come along at once, overpowering my mind. If it happens in the shower, I can almost cope, tears joining the water running down my face, but if it comes along in work, there is very little option to escape. My focus will be destroyed for the day, my mind struggling to clear the thoughts and emotions away, unable to easily compartmentalise what is going on. Impossible to comprehend.

I have lost so many working days to being unable to focus, which I then make up at another time, adding guilt to my feelings of grief, so that all that goes round my mind are negative thoughts and feelings. Many days and nights can be spent in a downward mental spiral.

Nothing can resolve these feelings, the root cause is not going away any time soon, but I try to utilise coping mechanisms. However, these incidences are becoming much more frequent, as the stress and strain of the last 8 years starts to toll.

Thanks

Time to call in the food preparation cavalry

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

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

Time for a heart check up

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

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

New Year Resolutions time!

Happy New Year – 2024 is upon us. We had a good end to the festive period, with a trip to Port Lympne animal and safari park in Kent (link here for info – I highly recommend it https://www.aspinallfoundation.org/port-lympne/). Unfortunately it was raining most of the time, so that did put a little dampner on everything, but we still got to see most of the animals there, especially the lions and tigers.

We have a domestic cat, and are always amazed at the similarity between her and the tigers. The same mannerisms, and movements, despite being significantly different in size!

The weather did cause one big problem. When we were on the safari, the ground was really muddy and rutted. We were all jolted around in the vehicle, and on one particular hole, my wife was bounced off the seat and landed on the floor. She didnt have a seatbelt on, and didnt really have quick enough reactions to catch herself. Some very kind people helped to pick her up, but she had a bang on her head, knocked her back and legs, and we later found out cut her back.

I may have mentioned before that she has a long standing pre-cancer back problem, and with her weight loss this becomes more and more prevalent.I think being fairly sedentary and lying down alot doesnt help ease it. So the concern now is that she has done more damage to her back. The long hours of driving over Christmas will now have helped either, and the sudden jolt on the safari has pushed some bones to stick out.

This seems to be a recurring theme in our lives. We have a good time, but something will always come along to take the edge off it and try to spoil the occasion. I cant moan though, we are luckier than most I guess.

Hopefully the injury will not impact too much into 2024, and she wont start the year off with unnecessary pain, but as ever the chances are slim. The best we can hope for is that the chiropractor can fix it before it gets too bad. We dont need this cycle of pain and correction throughout the new year.

Which brings me onto the new year, and my thoughts for resolutions. On a personal front I ended last year really badly, with work being much too stressful, and me being in a really awful place mentally. I was struggling to engage with people, like my capacity for interaction had been used up. So the Christmas break has been good to try and recharge my batteries, but I must focus on my mental well being on a regular basis as well. So my resolutions are an attempt to try that, without being too over selfish.

First up is being more considerate to my wife. I find myself being frustrated and not being as thoughtful as I could be at times. My frustration should be with cancer and not her, so I am endeavouring to be better. Her life is hard enough without me being angry at the situation.
My next few are linked with the first one in some ways. I realise my mental health is not good, so will do something about it. First up is to lose weight. A previous post talked of this need (https://mywifehascancer.blog/archives/760) and now I will be more serious about it.My weight is too high, and so I will bring it down. This blog will be where I keep track, and first up is a shot of the scales on the 1st Jan.

3. Next is to keep up my interests, and read more and listen to more new music. I will list the finished books here (currently reading a couple so hopefully soon), and new music I have listened to. I started with the 2023 Ash album Race The Night, which I cant believe I missed last year. The title track is brilliant.

4. I am also kicking on my guitar practice. I started lessons last year, and will now try to practice more. So far only a couple of Beatles tunes sound any good, but with a bit of work more will come through.

5. Finally try to engage more with friends, in person and on the phone. When I get low I shut myself away from people, which is an awful reaction and makes things worse, so I will start to shy away from doing that.

I see 2024 as a year to work on my mental wellbeing, and use that strength to help my wife with whatever happens this year. I feel yet again we will be in for a tough 12 months, so I need to be fighting fit physically and mentally.

Keeping Track

Current weight – 111.6KG

Books finished – none yet

New music listened to:

Ash – Race The Night

Thanks

Reflections on the festive period 2023

As ever in our house it was a busy build up to Christmas. Two school age children in different schools meant two carol services, two Christmas Fairs, and all the other random events they have. My son even had a trip to the National Theatre to see The Witches the week before he finished, a great thing to do, but it came with a return time of 11.30. As he hadnt eaten since 5pm, that meant a late night, which was tough when they were expected back in school at the normal time the next day.

My daughter had two university interviews as well, one on line, the other in person. That was days worth of travel the week before I finished. Fingers crossed it went well though, but we wont hear the results until the New Year.

Then my work has been the most stressful I can remember for a long time. I was covering a second job, which had very quickly gone south, and we were struggling to catch up. This was on top of my day job, which is booming right now as the business area is expanding, so that needed my full attention as well. I was cancelling meeting with friends in the run up to Christmas, which felt very sad.

At the same time we were conscious of the rise of covid again. My wife is obviously rightly concerned about catching it, as she is having chest problems anyway. So the rounds of parties and social events, even school carol concerts were bringing in an added risk to her.

One group of parents organised a Christmas social, drinks and nibbles at a local pub. We hadnt been before, so decided to try and get along, and were made to believe that it was to be held in a room at the pub. Unfortunately, it wasnt explained that the room was the outdoor covered area, heated by a handful of bar heaters. It was lovely, and looked fabulous, however my wife very quickly got extremely cold, and her body totally seized up. I had to gently walk her to the car after being there for about 20 minutes, quickly putting on the heating, and racing her home, where she crawled up the stairs and collapsed into bed with a couple of hot water bottles.

This is a new problem in the cold. Her body cannot cope with the extreme. It is almost like she has a certain amount of power, so her brain diverts it to keeping her warm, taking it away from the other bodily functions. Like a phone in low power mode I guess. And this process can happen really quickly – as above it was about 15 minutes from being in the relatively cold air.

The other major thing she is battling with right now is food. She will often suddenly rush to be sick during meals, unless the food is really bland. There doesnt yet seem to be a pattern we can detect. We know she has an intolerance to cooked eggs and alcohol, but there are other unknown items that lead to this violent reaction. The children and myself have sadly become accustomed to her running from the table to be sick, carrying on our conversation until she is finished.

It does mean that when eating out, we always have to clock the toilets first, and make sure we have a table with clear access, as well as being in a quiet area. It can be quite the demand during the festive period when businesses are trying to jam in as many tables as possible.

This has been a sad development for my wife, as she feels very restricted in what she can do. For someone who was really sociable in the past, yet again cancer is squeezing down the space she can live in, pulling the walls around her. I dont think that enough is made of this element of the disease. Whilst we rightly see pictures of frail and ill people, there must also be many more similar to my wife who are not bed ridden, but cant easily go out as they dont know what their bodies reaction will be. Not actively in treatment, with living with cancer. Almost forgotten about.

Like the drinks mentioned above, even sometimes events can be restrictive without people realising. A simple trip out in the cold to see Christmas lights will have a long term knock on effect, in our case we know that we will have to write the next day off. An invite to dinner has to be planned and executed such that we have an exit route, and a clear day the day after to recover. Not from the hosts cooking, but from the simple act of putting a certain combination of seasoning on a dish.

Many days these days are spent with my wife on the sofa. Her stomach is very swollen, and can be uncomfortable. We know the cancer has spread to various organs away from its original home, and I suspect that the issues described above are the result of that spread. The next round of scans are in January, where I imagine we will be told that it is getting steadily worse, but at this time there will be nothing they can do about it.

There is a race going on now, between my wifes strength and resilience, and the spread of the cancer. The hope is that she can hold on before the tumours become too strong and that a cure has been found. After nearly 8 years post diagnosis, the odds are stretching out, but we always have hope. She has defied the doctors predictions so far.

Last year at this time I said I couldnt see my wife surviving until Christmas, the one just past. This year I have no idea. She is becoming weaker in some aspects, and stronger in others. The coming year is an important one in our house, as my daughter is hoping to go to university, and I would dearly love my wife to be strong enough to help her settle in. That will be September 2024. Lets hope that medical science has a breakthrough scheduled for announcement in Jan!

Thanks