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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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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Its been a while since I posted anything here. Unfortunately I go through phases where I can focus on this, and phases where I cant. Thankfully nothing bad has happened with my wife, and in fact her latest results are still stable, so in a way that is good news. Though as I have written before, it feels a little like putting off the inevitable, which is frustrating.
The uncertainty doesnt help when planning for the rest of the year. We all as a family desperately need a break. Realistically, the break we need is from the disease itself, but we will have to settle for some time by a pool if we are lucky, and if we can find the money.
I struggle with planning for this kind of thing. I am always conscious of how hard it is to take my wife somewhere. And I know that it is really bad to think that way, and I should give her credit, but I find myself falling into the trap of thinking I would rather we didnt do things, than have to cope or compromise. My wife loved to travel in the days before she was ill, but now my first thought is that she may get sick while we are away from our house, or I selfishly think how hard it is to look after her when she gets tired and needs a rest, limiting what we can do.
So I almost dont plan for this. I leave her to propose things, and go along, dropping the odd realistic expectation in, which doesnt go down well. But there are other aspects of out future I do think about. Usually during a long drive, thoughts will pop into my head about certain things.
I will find myself planning what I will say during my wifes funeral. It is almost an excercise in making myself cry. I will think of different things of her life I want to highlight, and how we will miss her. I will consider songs to play. This is a little morbid thinking about it in the cold light of day, but I think it is all part of the anticipatory grief process, an attempt for my mind to try and cope.
I think about what my future will be like. I desperately want to have a normal relationship. A life partner I can share things with, laugh and joke with, go out for dates with. I found that person, and have now lost who she was, and that hurts. I wonder if I will ever have that again in my life, and when that new life is likely to begin.
I think about my childrens future. My daughter is looking around universities right now, and in just over a year she could be going away to study. I think how she will cope, and how we will cope at home without her. There is a strong possibility that she could go away, and it could just be me and my son living at home, and our family dynamic will totally change. It has always been thinking about my childrens future that has hit me the hardest.
These thoughts can tie my brain up so much that I cannot focus on much else. I am too preoccupied with worrying about the future when things have changed, that I find myself missing the now, not planning for the short term with my wife. In a way it almost as though I have mentally moved on for a period of time.
I have written before of how we seem to live in a constant loop, scans, results, then waiting for the next loot of scans. I guess that the things I mention above are a way to try and mentally break out of that cycle. God knows at times we need, I need to break out of that cycle. There is a guilty, selfish feeling that I am wasting my life, that we have dedicated so long to my wife and her disease, that everything else has become ignored. It is a hard balance to try and keep, between advancing our lives, in the knowledge that my wife may not be able to advance hers, and trying to keep the present going as well.
There is a frustration and resentment that comes to the fore, and these feeling block and take over my mind. I do feel guilty for felling them, and so the self loathing contributes more to the guilt. I know I am doing the best for my wife, and looking after her the best I can, however in the back of my head is the thought that I need to have a future for myself. I need to have something to define me when this phase in our lives has finished, whenever and however that may be.
The one thing that does keep me grounded is music, and I listen to alot. Just this last week I saw Guns N Roses at Hyde Park London, and they blew me away. I had seen them last year, with a truncated set due to illness, but this week they played three hours, and were amazing. A great time, with a really close friend did make me feel better.
The track chosen to share though isnt by them. It is by the Happy Mondays, and is another all time favourite.
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In response to my last blog on the declining impact of someone’s health (https://mywifehascancer.blog/archives/726), someone mentioned bucket lists and how they always seemed so irrelevant. I wanted to put down some thoughts on that.
I have known friends who have done lists of 40 by 40 or 30 by 30, things they want to achieve by a certain age. I think this is great, it gives a purpose, and hopefully a sense of fun to their lives. Most of them achieved the list as well, which is extremely commendable. However the bucket list of things you want to achieve during your life is a different beast.
This isnt just your life goals, but a tick list of things to complete. You may want to visit China or jump out of a plane. Often retirees will have a bucket list of holiday destinations they try to complete. No set date to finish it by unlike the 40 by 40, but you have the knowledge it needs to be done by the time you are too old.
The reality for someone like my wife, is that she had a list of achievements, and then was struck down by her diagnosis. Rounds of chemo and other treatment kind of takes away the ability to do most of things, and by the time you are able to get out and about, you find that travel insurance is too high, and you have less energy. Basically your reality is a shrinking world, and the bucket list items may be just getting up in the morning.
My wife does have a list of things she want to do, a mood board of short, medium and long term goals. These start very basic ‘get back to running’ and build up to travelling and working again. This is a way of her coming to terms and giving herself goals, but realistically even the short term are a stretch right now. She can barely walk five minutes, let alone run, but we will see how she builds up.
One short term goal is to do something during the summer, and we had a brief conversation yesterday. I had to explain that aside from the money (which would stop us doing anything right now), we cant travel too far as she doesnt have the strength. I dont want to go away somewhere and have to spend all the time looking after her in a hotel room. That isnt fun for her, as she will be worrying the rest of us are not enjoying ourselves. A staycation from our own home is the sensible option. I will be voted down I suspect, so need to scrabble and save somehow.
I honestly think she is suffering from cancer related fatigue, and thank god she has a blood test lined up next week which may help sort it. Cancer Research have a good article about this here https://www.cancerresearchuk.org/about-cancer/coping/physically/fatigue/what-is-cancer-fatigue. Fatigue is worse than general tiredness, and in my wife it results in her struggling to be on the go for more than maybe 20 minutes.
Carrying towels or washing downstairs is hard work, almost too much for her. Watering the garden is impossible as she cant lift the watering can. By the end of the evening (not day, I mean 7pm) she has to retire to the sofa to lay horizontal. This will be after just cooking the tea, putting on a load of washing and maybe mopping the kitchen floor. Nothing too outrageous, but simple tasks that she wants to complete for her own dignity and pride. The comedown from her daily activity before diagnosis is stark, and must play awfully on her mind.
By the time she is sitting on the sofa, her face will have a deathly pallor, grey and waxy. Her cheeks will drop, and her eyes almost roll back. I help her as much as I can, but crucially have to be aware that she needs and wants to do these things around the house. Her mind is still active, committing to things her body cannot complete. And this is outside treatment. As with so much of this disease, the impact on her is heartbreaking. A strong, powerful, independent woman has been literally brought to her knees.
On an aside, I was listening to the Warren Zevon song My Shits Fucked Up, and the line ‘You wake up every day, and you start to cry, yeah you want to die, but you just can’t quit’ struck me. He died of pleural mesothelioma in 2003, so his story has often rung true. His motto was eat all the sandwiches, a fine comment if ever I heard one.
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We have had a busy few days. My son won the league with his football team, so had a medal ceremony on Saturday. He was very proud as you would expect, especially heartening as he had been considering giving up the sport. Lots of photos with the trophy and his squad.
Then my daughter is starting her exams. AS levels, so between GCSE exams and A Levels. She is diligent and hard working, so I expect she will do well, but she has great expectations of herself, so our lives can be a little stressed. We have had some nice walks in the woods as a break through, and have also been helping her practice her driving. With a test in a few weeks, that is something else she is keen to master.
Of these activities, my wife was only able to come along to the medal ceremony. Even then she was struggling for breath and energy. I worry that things are progressing faster than we thought after the last scan, as the slightest exertion will send her back to the sofa. She will say that she has done quite a bit, but then it will transpire she means she has mopped the kitchen floor. Expectations of what she can achieve have really shrunken.
She wouldnt make the walk in the woods, and has said herself that she would slow us down. An activity that only last year she would have been alright with has now gone. Additionally she wouldnt sit in the car with us for a drive as that will hurt her stomach too much. We blame it on the after effect of food poisoning, but there is only so long we can bury our head in the sand on that one.
Food is still an issue, more so than ever. She will try a little at tea, but will resort to eating yoghurt and protein bars to get something inside her. I am reminded of when she started chemo, and was trying to take protein drinks then to build up her strength. The attempt now seems like a losing race, as the weight loss out paces the protein addition. She does have some good friends take her out places, and we will feel the effects afterwards of her almost comatose with lack of energy.
And I realise that I don’t want to be with her in this state. A horrible thing to think. The constant reminder and mental comparison with how she used to be is getting too great. I find myself hating being a carer (as I have mentioned before here https://mywifehascancer.blog/archives/496). I hate not having a partner on level terms. But I am struggling with the half finished jobs around the house when I get home, and the broken items around the kitchen that I need to fix. The role of a carer is one that is not often talked about, and even then only in terms of the support to the patient on a daily basis. We never mention that there are many things that need to be done because the patient cant complete them as they need to keep their dignity but lack the strength to do so.
And as partner, seeing your loved one totally changed is devestating. The weight loss, the change in her body. The wheezing as she struggles for air, or when food is stuck in her throat. I am reminded sadly of the last months and years of my grandfather when he was in a home. He had parkinsons and eventually was unable to look after himself safely. The weakness in his body, the weight loss, the struggling for basic life was heartbreaking, and I feel I am now reliving all of those emotions now.
We sleep in seperate rooms now, my wife in our marital bed, hopefully comfortable (apart from the cat on her feet), me in the spare bedroom on a single bed surrounded by clothes drying. This isnt how we saw our late forties going at all. We imagined our children growing up in a happy home, with loving parents, trips out as a family, maybe the odd date night as they were old enough to look after themselves.
Cancer causes the bodies cells to fight against themselves, mutate and destroy the neighbouring cells. The disease is relentless, unless caught and treated. That is the basic medical side of it.
However there is also the non medical effect. Cancer as a disease starts with the patient, but destroys the neighbouring family members, rippling out from the start, and infecting every aspect of their lives. It breaks up happy marriages, causes mental illness in children, and is relentless. I think the effects will be seen long after my wife is gone, in me and my children trying to live with thoughts of what we have been through. I guess a form of PTSD potentially.
It is that destruction that I dont want to be reminded of. I dont want to witness the changes cancer has brought, or the pain it is still causing. My mental health has had its fill of all of this, and is struggling to cope with it now. Maybe there is an aspect of dehumanising my wife as well, seeing her a patient rather than as a woman with feelings. It isnt intentional, but a form of coping mechansim, a way to get through another day.
Coping is the only way these days. There seems to be little chance of things getting better right now. We are on a downward trajectory, a glass slope with slippers on, and feel in free fall. Where and when we will land we don’t know.
A bit of further reading has told me that what I am experiencing is another stage of anticipatory grief. Something else I have written about before – https://mywifehascancer.blog/archives/387. Back to discuss the old mental health, and the stress and concern we are living under.
This type of grief comes round in waves, and personally effects my well being by almost paralysing me. I know what I need to do, and when I am in my safe space of the car I can plan out what I need to do, but when I sit at my desk, or start a task, I cannot complete it. The ability to have confidence in myself has gone. Not great when I work for a very competitive company, and need to keep a job to try and pay the bills.
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So in the UK we have been celebrating the Coronation of our new King, Charles III. This was an amazingly historical event, with the usual pageantry and pomp that we like to show in the UK. It also meant an extra day off work (for some people the most important thing!).
While watching some of the day (not all as I had to take my son to his football match, and collect my wife from the airport), I got to thinking about it. First off this was a ceremony that has origins going back a thousand years, longer than some countries (hello the United States of America), using crowns and thrones of a similar age. The thought that I believe approx 40 monarchs in the UK have gone through that ceremony was mind blowing. Additionally the amount of people to have witnessed it over that time, and the reasons behind some of the strange looking aspects are also quite impressive.
I thought it was interesting how many different countries have also had similar ceremonies in the past, all developed along similar lines, but without discussing it. I find it fascinating how cultures develop similar ideas independently of each other. I am currently reading Sapiens by Yuval Noah Harari which mentions many of these topics in giving a brief history of human kind. The story of the progression of humans is quite something.
It is strange how by purely a twist of fate, we live in a country that has this history behind it. I could have been born in a country looking on in wonder, wishing we had our own Royal Family. And that twist of fate also applies to many other things. It is seemingly random where we are born, and the lives we lead. And is that fate the same when it comes to getting cancer?
Is it chance that some people get ill, while others can be exposed to the same thing and not be? Of course not, there is some scientific reason behind why one person will get mesothelioma, and another wont. There can be many years before the disease can appear following exposure. (the article linked here has some useful facts and information https://www.lanierlawfirm.com/mesothelioma/). The amount of cases diagnosed each year is relatively low, but the disease is extremely aggressive.
And so by that long forgotten twist of fate, I and my family are sat at home with a seriously sick patient, struggling to relieve pain and hurt along with mental anguish. Butterfly beating its wings and all that.
My wife had seriously bad food poisoning last week, and was very ill for a couple of days. We sometimes wonder if she gets these minor illnesses worse because of her disease, and I suspect she does. Her body is already weak from trying to fight cancerous cells, and I imagine doesnt have much strength left to recover from food poisoning. Again I was really worried, as I was a few weeks ago when she called to say she had similar stomach cramps and sickness. When the specialist says that things may change quickly, you take their word as real.
She was staying with family for the week, which had been a great break for all of us. She was relaxing, we were relaxing. But the worry came flooding back when she called to tell me. And it has come back now as she is home. Even my son is feeling sick now she is back. When it was just the three of us, myself and the children, we seemed much more relaxed and happy. The stress and worry had gone temporarily. I feel guilty about that.
Our fate as a family is unfortunately partly known. I am sure we will lose my wife this year. However, the rest of our story is unwritten. How we cope and move through these months will define how we are going forward. It feels rather morbid to thing that way, but my mind has to be planning for a time without the love of my life, and the mother of my children, while trying to enjoy and cherish the present. A tricky balancing act.
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Yep, starting with a Johnny Rotten quote today. This line often comes to mind, the feeling of not being dealt the right hand in life. He said it on stage at the final gig of the original Pistols, way back in 1978, as they broke up in disarray, the rest of the band flying off without him, before Sid was banged up on murder charges. Johnny Rotten resorted to being John Lydon, started PIL, and the rest of his story is history.
The feeling of not being dealt the right hand, being cheated often applied to us as carers of partners with a terminal diagnosis. It applies to the person with the diagnosis. Often cancer is not something we have done to ourselves. I know some activities can lead to lung cancer and so on, but that isnt always the case. It isnt fair that your body decides to turn on itself, destroying the cells around the tumours, and ultimately kill the host.
It isnt fair that the family and friends have to watch this happen. The decline in health of a loved one is horrendous. Whether slowly or quick, the heartache and frustration eats you up inside. The feeling of helplessness, not being able to do anything to stop the rampaging disease. Sometimes caring for someone feels inadequate, you want to be able to do something more constructive than just ease the pain, or keep them comfortable.
My wifes last set of results again showed her slow decline, as cancer spreads like an invading army. It has taken footholds in her liver, lungs and bones, pushing on from where it originally was. It is making her tired and weak, skinny and lacking muscle. I have a feeling her ability to heal is waning, and unfortunately the options for help from medical science are slim right now. No chemo or surgery is available.
She has gone away to stay with a relative this week. This was a good opportunity for us all to decompress. Took me a day, but eventually I felt that the pressure had been released. I realise there is possibly an element of being out of sight, out of mind, and I feel a little guilty for that. However, as I keep being told, self care as a carer is vital as well. No use me being ill or overwhelmed, as I cant keep the rest of or lives going.
The children seemed more relaxed as well. We had fun together. Away from the constant reminders of reality. My wife lying asleep on the sofa most of the evening keeps the thought in the childrens mind most of the time, so her not being there just takes that away.
We did have one worrying time, when she caught food poisoning and spent the day being sick. You may recall this also happened a few weeks ago, and I guess she is more prone to getting small illnesses like this. Thankfully it seems to have gone after a day. It is hard being remote, as even though I am finding myself relaxing, I immediately leap into carer mode, and want to make sure she is OK. It doesnt take much to reactivate every feeling, and get the stress levels back up again.
I am also seeing a slightly concerning trend, and may investigate further. She seems keen to visit old haunts, and places from our past. This has been noticably more than previously. I get the feeling she is making peace with herself, and remembering the good times, while also seeing places where she was happy. I guess after the recent diagnosis that might be a natural reaction.
Not alot we can do about this, just ride it out. I dont have a great deal of confidence that we will ride the year out as a foursome complete family though.
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Waiting for scan results I find leaves you on a heightened level of anxiety – scanxiety I believe it is called. The scan process was tough for my wife, especially as the timings got messed up due to traffic, and then the scans themselves took longer. That was last week, and I am like a cat on a hot tin roof waiting the seven days for the results.
Which then are delayed as well. The oncologist is invariably running behind time. This you have to forgive, she is dealing with some real life changing shit. I couldnt do her job. So an hour later than billed, my wifes results walk out on stage, via zoom. Thats the other things here, we still try to minimise trips in hospital if we can, both for covid concerns and also to reduce the strain on her mental health.
With them being delivered on zoom, it has started that I dont sit in. As I have mentioned before (https://mywifehascancer.blog/archives/688) I worry about my wifes mental state these days, so there is the risk of her missing something, but she also prefers to be on her own to be able to concentrate.
They came back with the same story. Disease growth in everywhere aside from the original location. Liver, bones, lungs, all seem to be getting some attention now. It would explain much about why she is so tired, itchy, and bloated. Apparently many symptoms of liver disease. Is that the path we are going to be going down to our ultimate fate? No one can tell so far.
The results are why I feel that nothing ever happens (link to the Del Amitri song below – I have been listening to loads of 1989 music recently, and this is one of the classics).
I feel frustrated as I want something done. If she was a new patient, then she would be in on a course of treatment. Because she has had all the treatments, thos routes seem to have closed off, and we are just left waiting. And is so bloody annoying. I want the doctors to do something, anything.
It is horrible watching someone die slowly in front of your eyes, and not having any support to try and stop it. The oncologist will say that disease has spread, and we need to watch out for any sudden changes, and then come in in 6 weeks. And that will be it. Great. Basically good luck, get on with it.
Meanwhile my wife is sruggling for breathe, and unable to walk long distances (and by long I mean round the supermarket). She is bloated and uncomfortable and has a hot water bottle to ease the pain on her stomach every night. She is itching all over, and cant live in her own skin for the extreme annoyance.
This is no way for her to live long term. I want them to do something, or at least say something about a plan. Tell us what they plan to do. But realistically, there is no treatment, and we are living the only plan they have. We have to wait and watch, and let this disease tear more away from my family, as my children see their mother become weaker and miss more and more of their lives. Its tough knowing she is there, but cant participate.
And I personally feel that my life is still on hold, held back by the creeping advance of death. I dont want to lose my wife, but I want to live with the woman I married and planned on being with until we grew old. That woman has gone, and with it our hopes and dreams for the future, and it sucks. Living in fear of what will come along, and feeling that we are facing a much stronger adversary with no weapons at our disposal.
I want to be out of this hell, I want to back with my wife. I want this to be over and the stress and pain to end. But every few weeks, we get pulled back into it again, only to be told that we have to wait and see what happens. And nothing ever happens.
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In a melancholy mood, I got thinking of some of the bad days we have had. My wife isnt great right now, today was a day where she didnt even have the energy to get up and get dressed. Her stomach is really bloated, a sign that the ascites is back (this is a build up fluid caused by the tumours from her cancer).
This all means she is extremely uncomfortable. If you didnt know her, and saw her clutching her bump, you would think she was pregnant, but that ship has sailed. The ashen face and thin arms and legs would also be a clue that all is not well. Bones jut out from her chest, and she is very frail on her feet. A fall a couple of weeks ago has really knocked her confidence. She was tripped up by our cat and fell flat face first on the patio, cutting her nose and cheek, and bruising her lips and eye.
I feel we will be lucky to see her at Christmas this year. I havent seen her like this before outside of treatment, and additionally havent seen her deteriorate so quickly in the past. She has gone from seemingly doing fine, to losing all that weight and becoming very different. I worry alot about her now. Her fall happened when I was at work, and it would be a problem were something to happen again. She has moments where she will drop things, or burn things, and doesnt have as much of her mental capacity as before, especially when she gets tired. And she gets tired easily. I said she hadnt got dressed today, but she has spent most of the day on the sofa, and had an hour of shut eye this afternoon, despite not doing anything.
This has brought to mind the reality that we may be facing another awful day very soon. It is inevitable, an inevitability that is both too great to consider, and too true not to. We have had a few worst days of our lives over the last six years, and they all contribute to us feeling nervous and apprehensive about where we are heading.
The first one was the day of my wifes diagnosis. This was in a regular hospital near us, in an NHS doctor meeting room. This was the latest in the line of a few meetings with this doctor, as they had been trying to determine what was wrong with my wife. Her symptoms said something, but many of the regular markers wouldnt play along, and the medical staff had been baffled. We now know she has quite a rare form of mesothelioma, and so not many of the doctors at the regular hospital would have seen it before.
We were ushered into this room, and both sat facing the doctor on rickety chairs. I recall placing a bottle of water on the floor next to me, as we pulled out notepads to write down the next stage in this journey. It was then that I realised there were more people in the room with us than normal. Usually just the one nurse would be there, this time there were three or four extra (the true amount eludes me now). ‘This is strange’ I remember thinking, but I was too slow and preoccupied to consider why they were all there.
The conversation is now a blur, fully lost to the mists of time, but I clearly remember after the doctor said my wife had cancer. My mouth went dry, and I was desperate for the water I had by my chair, but unable to move to get it. I didnt want to disturb my wife and annoy her by moving in her eye line. I also just wanted to scream at the doctor not to say the word ‘CANCER’ as if by him not saying it, it wasnt real. ‘Take it back, dont say that’ my inner voice was shouting, as sweat trickled down my back. I finally just wanted to get out of there, I wanted to run and leave. I had to support my wife, but my own survival instincts kicked in and wanted to take me away.
We were ushered into a room with a couple of the nurses, understanding now that they were trained cancer specialists and also trained counsellors, a logical step to take for us. There wasnt really much they could do at that time however, as we were too numb to take it all in. So many questions, but no way to articulate the words to ask them. Some things you really do need to take the time to process, and this was one of them. We would be off on our non stop journey meeting with specialists at the Marsden in Surrey, trying to understand the options going forward.
One personal note from that day. After we drove home in silence, and told relatives, the next day I went to tell my manager the news, and explain that my life was about to be thrown up in the air. I was the supervisor of a group of four, working fairly independently from my manager with a more day to day reporting line to managers in the US. When I was about to enter his office, his manager asked to speak to me, so I agreed to pop in to his office straight afterwards. It transpired that they wanted me to take on a new job, supervising a much bigger group, but at the same time as there was no back fill, keep oversight and management of my existing group. A move with alot of extra responsibility reflecting the good job I had been doing up until that point. I had to decline this due to the news of my wife. I would say my career has not recovered since. On such moments life can hinge.
After the days of surgery and chemo, which had more optimism involved as we hoped for a fight against the disease, the next worst day of my life, arguably the toughest. It was a weekend at the start of Oct 2018. We were going on holiday the next week to celebrate the end of my wife having immunotherapy. However during the Friday she developed a bad back, and started struggling with her breathing. That night she barely slept, and didnt feel great the next day. Stupidly we thought it was a muscle problem, as she has had a back issue in the past. It wasnt dear reader.
I tried massaging her back, and using various ibuprofen gels, none of which worked. Sat night was worse, and the only way she could sleep was sitting up right. After discussing it we finally called the helpdesk at the Marsden to get some guidance, and were told either bring her in, or if it got worse head to A&E. That afternoon we went to A&E, children in tow. Luckily our next door neighbours could come and collect them, and my brother in law came to stay with them. The wait was long, again sat on plastic seats in the brightly lit NHS. It took a while to get through the waiting room, before we were in a triage type area, where they did tests, and as her breathing was now much worse, hooked her up to oxygen. Strangely we were in a cubicle I have previously taken my daughter with a badly bruised ankle.
She was really struggling for breath by now. They thought it was pneumonia, and to be honest it may well have been, I can barely remember. We were moved up stairs to a ward where they found a bed away from the madness of A&E. The ward was full of older ladies, some not quite the full ticket. I had one strange lady accost me by the entrance at one point ranting about how the doctors had killed her son. Very surreal.
By now it was very late, and watching my wife I knew it was not going to get better quickly. She was hunched over, focusing on getting life into her lungs. Our mantra became just keep breathing, and at one point we bought her a new pair of trainers on line to take her mind of the ordeal. But her lungs were only taking in about 10% to 15% of the oxygen required. A ridiculously low amount. The call was thus made.
They had to put her in an induced coma and move her to a hospital with the ability to properly fix the problem. Her eyes widened and a look of shear terror spread across her face, while again my back became soaked in nervous sweat. A horrible choice of danger from a coma or death from slowly suffocating. Eventually she handed me her jewellery for safe keeping, changed into hospital robes and was wheeled into a different room to be put out, as I stood there with her bags wondering what to do.
The children cried when I told them the holiday was off, and the next few weeks were filled with trips to visit at first a comatose wife, and then someone brought round in ICU, having her suffer a stroke and recover to someone different to the person who was taken in on that Sunday afternoon.
So now I know we are facing another of these types of days soon. The fun thing is when faced with a terminal diagnosis, you never know when it will come. (That was a joke by the way, the fun comment, not the terminal diagnosis piece). We currently see a slow decline in her body. That may get better though, be the result of a virus or such like. Or could quickly go the other way. And then throw us into another awful day of hospital rooms, bleeping equipment and oxygen masks all helping to keep her body alive. Until the time they dont keep her body alive.
It is impossible to properly cope with this knowledge, both as patient and as a carer. You need to compartmentalise, shut the bad thoughts in a part of your brain to not affect your day to day life, otherwise you wouldnt function. I guess that is why patients of a terminal diagnosis have such a go get em attitude, trying to live every day like their last, because, well, every day could be their last. The rest of us dont really understand that mentality, we dont have the frame of reference that impending death brings. The rest of us have to try and cope with that awful knowledge the best we can, while also preparing for an eventuality that goes beyond losing the loved one.
This was written today to the tunes of Emmett Finley, and I can highly recommend checking him out.
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At what stage do you broach the topic of independance with a terminally ill patient?
My wife has always been very strong willed and extremely independent. Losing the ability to drive hit her hard, and she has found that tough to deal with. She now has to rely on people to take he anywhere that isnt within walking distance, and as we live in the countryside, that isnt many places.
She used to drive to visit her mother, which is a couple of hours away, and now again that entails more planning for me to either take her, or for her aging mother to come and collect. For a formerly proud and strong woman, this has really taken a toll on my wife.
She frequently mentions trying to see if her eyesight has improved enough to drive again. It was her stroke that left her without vision on her left side. Unfortunately the specialists have not seen any improvement in that aspect. She is also way too frail and slow thinking these days to not be a danger on the roads. It is sad, as the cancer has taken away something else, a topic I have discussed previously – https://mywifehascancer.blog/archives/615.
It is the frailness that is worrying me today. Yesterday she fell over going out the back door, when our cat ran past her and distracted her. She told me her foot caught, and she woke up face down on the patio. Her face is horribly bruised and cut, with a swollen knee, though luckily it doesnt appear that anything is broken, which is a surprise as her wrists are very thin. If you didnt know, it looks like she has been beaten up.
This isnt the first time that things have happened by accident. She has fallen over in the past, tripped over the stairs for instance. Glasses frequently jump out of cupboards by themselves, and plates often seem to slip from the table. One off would be an accident, but more than once becomes something I need to be concerned about.
She is losing her ability to do things safely, but wont accept that, and will continue to keep doing what she used to do. Is this safe? I cant tell her not to do things around the house, but I seem to spend most evenings fixing things that have broken or gone wrong in the house, ‘by accident’. When do we reach the tipping point?
And how do I broach my concerns with her? Telling someone you dont think they are safe to be left alone for extended periods of time must be devastating. She is 48, not old. She doesnt have a disease like dementia or parkinsons whereby she might be struggling, but the cancer has affected alot of her body, and she has started to waste away really badly.
We have been put in touch with a hospice in the past, but I dont feel we are at that stage yet, and she would fight tooth and nail against something like that. But I do worry the burden has become too much for me to look after her, along with all my other duties around our lives.
A further thing is that her back has now become bad, seperately from the trip. This will entail trips to a chiropractor, that isnt covered by health insurance. We thus need to find a way to take her twice a week to get this sorted as it is causing her chest to be in constant pain. She has a hot water bottle to try and ease it most of the time. Another worry for us all. I am hoping to raise some money to help pay for this treatment, so please consider donating.
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