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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

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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

The first school carol service of the year

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

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

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

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

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

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

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

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

Thanks

We went to see the Christmas lights of old London town

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks

Revisiting last new year, and thoughts of 2023

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

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

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

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

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

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

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

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

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

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

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

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

Thanks

Remember, remember, the fifth of November

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

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

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

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

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

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

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

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

Thanks

How to fix a relationship?

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

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

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

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

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

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

Thanks