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)

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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)

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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

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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.

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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.

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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.

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My wife is experiencing regular nausea now her cancer is more advanced

I mentioned in a twitter (or X) post recently, that when out for dinner, I will sometimes look across at my wife and just know something is wrong. Unfortunately this is happening more regularly. She will slightly push her plate away towards me, a gesture I know means ‘eat some of this to make me look polite’. She will then sit there hands in her lap, zen like concentration on her face.

This signifies that she is desperately holding down the contents of her stomach. We have had occasions when this hasnt worked. Usually at home, where the impact is more contained, but one memorable moment in Paris a year ago, where she at least managed to get behind a parked car before being very sick. I had to quickly pay, and hope the night of the other patrons at the outside tables had not been ruined.

We will then try to get her to her bed, where a damp cloth, and iced water will ease the symptoms. Typically after a couple of hours she will be strong enough and the nausea has passed enough to be able to manage a small amount of food, but I’m not sure whether a diet of Vimto and Lotus Biscoff biscuits is sustainable in the long term.

Apparently nausea is a common symptom in advanced cancer (https://www.cancerresearchuk.org/about-cancer/coping/physically/sickness/treatment/controlling-sickness-in-advanced-cancer). Another thing we now have to be aware of and careful with.

She has lost a hell of alot of weight. Her skin hangs off her bones in places, particularly on her arms and legs, where her limbs appear to be nothing but bones, no muscle or fat. Her shoulder blades are prominent, sticking out, and her face looks gaunt. Her stomach is now swollen as though she were pregnant, large and distended, while her breasts have now shrunk away.

Were you to see her for the first time in years, shuffling into a room on swollen ankles, you would be shocked at the change. Outside of having chemo, she looks the ‘illest’ she has done during the whole time of having the disease. She seems to have aged considerably in the last 9 to 12 months, drawn around her face and neck. We have to make sure she is helped into the car, in case she bangs her head on the door frame.

A persistent cough and flem on the chest is another concern, and this is taking a while to go away. To hear her sometimes struggling to breath whilst coughing having eaten very little tears my heart apart. She has turned before my eyes into a little bird, in need of help that I cannot always give. I dont have the ability, no one has the ability to shift many of these symptoms she is experiencing. All we can do is try to help ease them. I try hard to make sure she is comfortable, whilst also trying to give her as much dignity and space to be herself, but it is getting harder and harder.

When she gets tired she can get forgetful, which can mean things around the house being half completed, or her embarking on a trip out, but not being strong enough to get home. I worry, but know that I cannot force her to stay at home resting, I have to watch fearfully. A coffee with a friend is a great thing to do, but I know that conversation and the stimulation of being out will mean she is asleep on the sofa for the next few hours when she gets in. Goodness knows what my children think.

I have caught my son copying me, and protecting his mothers head as she gets into the car, offering her his hand to steady herself. He is only 11, and shouldnt have to do these things, but his kindness shines through. My daughter has passed her driving test, so now she can help with lifts, taking some of the burden from me. They are both a great help.

I said at the start of this year, that I couldnt see my wife being here for Christmas. I am a little more optimistic now, but still feel that we may not have her much longer. We keep praying for a miracle cure.

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Its time to get physical

So, summertime, and we have had a few family trips out. I mentioned previously how hard this can be with a disable wife (https://mywifehascancer.blog/archives/753), but the other thing worrying me now is my health.

I’m not getting any younger, and the last seven years have been quite a stress on our family and me. The extra grey and then receding hair is testament to that fact (if anyone has any tips to stop thinning hair, please let me know, I’m not sure how long I have left before the razor hits). Some small niggling injuries have also hit me, a recurring achilles problem has required physio for a few months (thankyou NHS), while recently a frozen shoulder has decided to raise its ugly head.

These have meant that my usual fitness regime of running was not possible. I didnt go enough anyway, and the weight was slowly creeping up, but now it is noticeably worse. Day trips out mean lots of walking for me, as I try to cover the role of two parents. A trip to the swimming pool will have me in the water all the time, despite not enjoying it as my son loves the water. My wife used to love swimming with them both, but is very self conscious of her body, especially her bloated stomach and skinny arms and legs. She gets some funny looks from people.

We used the school tennis courts the other day, and despite only playing for an hour, and really just knocking a ball around, I was huffing and puffing after 30 mins.

This has got me worried a little for our future. It is inevitable that we will be a single parent family soon, but the last thing I want is for me to add to the stress by having serious health problems from being over weight.

I like my alcohol too much to give it up (possibly it is a bit of a crutch these days as well), and I like to eat well, so I have to increase the exercise somehow. As I said above running is out for the time being, so I am thinking of getting a cheap exercise bike to have in the garage. That way I can use it rain and shine, and listen to music or watch TV at the same time. Who knows, my wife may even become well enough to try it.

My biggest fear has always been how to tell my children their mother has gone, and I now realise that I want to make sure that I am in the best shape to be with them for as long as they need me. The weight must go, and the health issue have to be solved. Watch this space.

The song playing in my head was the following. Not cool by any stretch (no pun intended), but it works. My father in law calls her Olivia Neutron Bomb. Hes funny that way…

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Summertime, and the living isnt easy

We have been lucky as a family to have some trips out recently. My wife has been able to join us, despite her failing strength. This has been great for the children, they have both finished school, and the time together is a brilliant way to unwind, and make memories.

My wife has a blue badge, which means in the UK she is classified as disabled, and we can park in more accessible locations, and sometimes get better access to things we need or want to visit. Over the last months she has become noticeably more disabled, frail and weak. I always felt before we were judged because she could walk unaided, but now she does need help getting in and out of the car.

Her arms and legs look much thinner, and the muscle definition has gone. In some parts of her body you would think she only has bone with the skin hanging off. I am always put to mind of the harrowing photos of famine victims, with the lack of food causing extreme weight loss. Only now do I realise that a disease can have that same exact impact on a body.

She still walks with us, but after a week of trips, her ankles have swelled terribly. I presume this is due to her circulation not being good enough, and gravity then takes it course, pulling the liquid in her body to the ground. She isnt in pain, but I imagine it cant be a pleasant experience.

The children are great, and help where they can, above and beyond what they should have to do. We havent yet used a wheel chair, as we feel that may be a step too far at this stage. She isnt sick enough to be invalided, but with no treatment plan in sight, despite recent positive scan results, it can surely only be a matter of time.

I hate the feeling of having an invalid wife when we are out. Everything we do takes longer and is more visible -just the effort to get out of a car takes much longer than for anyone else. She cant see where to put her foot, and cant see where to hold to steady herself. You can see people pitying us, watching and waiting, almost tutting, while a seemingly young family struggles. No family should have to put up with the struggle of having a loved one unable to do some of the very basic things a human should be able to do. You feel under a spotlight.

And the tolerance in society has gone as well. People will just quickly stop their car in a disabled spot, not realising that my wife or an equivalent needs that space to get any chance of having a ‘normal’ existence. People push past, hurrying along, not noticing they have elbowed her in the face, which she couldnt avoid as she cant see out her left side (a real event that happened two days ago, leaving a nice large bruise on her cheek, thankfully not a broken bone).

I hate it, and she hates it. Mobility and independence was snatched away from her, with her dignity not far behind. Imagine being able to drive, having a full time job, a partner, children, fulfilling hobbies outside work, only to have those things taken away, while hearing how your friends careers, holidays and sporting endeavours are going. I struggle to cope with that, and cannot fathom how she doesnt go mad with anger and envy.

I find summer particularly hard, as everywhere you go there are happy families and friends, out and about, enjoying the good weather. Couples will walk hand in hand, not to lead one partner along the path, but because they just want to. Parents will sit on a bench to watch their children play, not because one of them is out of breath from walking 100 yards from the car in the sun.

I get jealous of couples. They have what I want, but have no way of getting. Date night, meals out, even a drink together in a pub beer garden. None of these happen in our lives. A physical relationship is long gone, never to return. On a selfish note I worry that this disease has taken away my only chance of happiness and love. Sometimes I would give anything just to have a hug from the wife I married, let alone anything more intimate. To feel her arms wrapped around me, and not be worried that the sheer act was hurting her. To feel her warm body against mine, and not have her ribs and shoulder blades digging into my chest. To hold her, and not worry about crushing her like a small bird would be the most amazing feeling.

We have been lucky to have many years post diagnosis with my wife. 12 months was mentioned at first, and we now have seven years. We have tried to make memories, and tried to enjoy life the best we can. But part of me does wonder at what cost. The stress and strain for me and my children when the inevitable comes, on top of the years of worry. Would a short illness have been better, is a question we should never ask, but the long term impact on us, plus the suffering my wife has had make me wonder in my darkest moments. To end in the same place, despite all the treatment and care, seems really cruel.

Summertime, and the living is easy, goes the Gershwin song (here in a Lana Del Rey version). But really, it fucking isnt for lots of people. Its hard, and uncaring, and a battle for many to deal with.

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