I wanted to compile a list of resources for those who are going through similar to my family. This will be an evergreen list of useful links, tips and so on. I will update regularly as I find new things to share.
Diagnosis and understanding
Obviously, you should go to your doctor for any diagnosis, but to help with the understanding, because the words and explanations can be very scary, these links to medical sources may help.
The UK health service, and their website has an amazing array of information. This link talks about the main types of cancer, spotting cancer early, and ways to reduce risks, along with types of treatment. A good general guide for those embarking on the journey.
A US based website, again some great resources, and a section on how cancer is diagnosed. Again, useful to help understand what is being said in the early days following a diagnosis.
A great website, with a pdf you can download. Talks through what a caregiver is, what they do, even what if you dont want to be a caregiver. Also tips on looking after children and handling work situations. A good one stop guide.
Charities
Cancer Research UK
This charity does alot of good in the UK, and have a great amount of resources again on their website. In particular I like this page on caregivers, giving advice (look after yourself), and practical tips. The link to the caregiver page is https://www.cancerresearchuk.org/about-cancer/coping/family-friends-caregivers but explore the website more. And donate to their charity, in the UK you can gift aid your donations, so they get the tax back.
Not gonna lie, these guys are the dogs. They support so many people and give out some great guidance. They organise charitable events to raise money, but also can give comfort to the dying, their carers and anyone with concerns.
Mental Health
Keeping on top of your mental health is vitally important, and the below groups can give support and guidance.
Mind is a UK charitable group, who promote some really useful information. Highly recommend investigating their page and getting advice if like me you are not coping. https://www.mind.org.uk/
These guys sell a variety of gifts and living with resources for someone with cancer, but also have some excellent resources on their website. You can find a list of tips for when a loved one has cancer, tips on dealing with side effects, and much more.
Thanks
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Again, its been a while since I have written here. Mainly through no major change in my wifes health situation. The Christmas period seems the best time to re-engage, while we are trying to rest and relax. Or is it betwixtmas period now? I lose track.
First things first, my wife has been reasonably healthy. No worse than previously. Her blood scans show consistent calcium levels (a blessed relief after the nightmare summer we had, recalled here https://mywifehascancer.blog/archives/948). We have to be honest here though. Despite all our hope and longing, she is never going to fully recover. Her illness makes small steps forward, a little bit worse every time, tiny advancements in the war of attrition.
She hopes that utilising some alternative thinking will help. It really does mentally. Despite the unimaginable loss of her physical self, she is maybe almost more determined than ever. We joke she has a ‘water ski face’ on when she wants to do something new and she will usually achieve it – this derives from our honeymoon, when she climbed aboard one in the Maldives, and successfully stayed up right, buzzing around the sea. I was less successful. Dry land is my forte!
As ever we have strived to make our Christmas magical for all the family. The water ski face made sure that my wife was determined to get involved in every aspect she could. Some times we were defeated by the threat of illness – that was a scary round of flu ahead of the break that took out many of my sons school friends, and made us lie low and hunker down away from people for a few days. We tried to only attend the important commitments, keeping away from public transport and busy shops where possible.
And it worked. We were all healthy for Christmas, and managed to visit with family, and enjoy the day itself. We ate too much food, I drank too much red wine (if such a thing is possible!), and had plenty of fun along the way. We had some family staying, and it feels selfish to say it, but the best times for us were when it was just the four of us having fun together.
I wonder if subconsciously this was because this year marks ten years since diagnosis of my wifes cancer. This was the time of year that we were trying to understand what was wrong (you can read some of the early origin story here https://mywifehascancer.blog/archives/40). I do think it has been a little on my mind. Ten years is a long time to be battling and coping with something like her disease. Yet on the other hand, the time seems to have disappeared by in a flash, with an impact that has torn our lives apart, given them back to us piecemeal, and then shaken all those bits up and thrown them around. We have grown and learnt, and still live with the feeling that we are inside a volcano that can erupt at any minute, often without warning.
Much of the Christmas preperation was done by my wife weeks in advance. How do women do it? I have no clue, and that is one thing that scares me. I could never do Christmas as she can do Christmas. Every year I watch, and think I will learn, but I dont seem to be able to understand or plan well enough. I cant see behind the curtain, dont understand how the wizard makes it all work (topical for you Wicked fans…). I am like Dorothy before Toto pulls away the drapes. Confused and unsure of what is happening.
I do pick up the reigns when it comes to the day itself, and with my daughter we pulled together an amazing meal. It is a fun time, the two of us cooking together, and then watching as people enjoy it. One of my happiest times as a father. The day just feels so special. A time when the outside world, and the pressures we all live under can hopefully be put aside for one minute.
I am sure I have read before that Christmas, as a time of great expectation and hence stress, leads to many couples to split. Family arguments occur as everyone is often back under one roof, attempting to make that one day the best of the year. And I’m not afraid to say that this year, the day after boxing day led to me having a minor breakdown. There were a few reasons.
I’ve mentioned before that my job is being made redundant in the New Year (probably about June), and so that is praying on my mind. And despite the end being in sight, there is no movement on who I will hand work over to, and there is even a sense that more is being thrown at me! And at the same time, colleagues are leaving, so the atmosphere in the office gets quieter and more depressing.
The ten years of being a carer has taken a toll that I didnt realise. I sympathise with other carers who cannot get a break now and then, as the intense pressure must be unbearable. I feel like I am spread too thinly at times, and thus struggling to cope., and I have some support, and a wife who whilst ill is still capable of looking after herself.
Then I am an introvert, and do need to recover from social interactions. So Christmas, with its many times of catching up, and visiting with family, uses my social battery up really quickly, leaving me depleted. I also feel under constant pressure to make sure my wife is having as good a time as possible, neglecting my needs, and take on the mantel of protector, leading me to feel everything depends on me. It doesnt, and I only realise that when I am rested and functioning properly. Though this self care is not something I prioritise unfortunately. That contributes to the headaches, and back aches, and general feeling under the weather.
The lyrics of the following James track kind of talks a little to how I felt driving my wife and children (and cat!) to another visit with family. In a hole, way over my head.
So I need a complete rest. Interestingly (and this might be the universe helping out here) a LinkedIn post directed me to The 7 types of rest, a proprietary framework developed by Dr Saundra Dalton-Smith (https://www.drdaltonsmith.com/). Isnt it funny how that kind of serendipity happens? Anyway, I will learn them with you now. I’m hoping these might help me figure out how to improve the mental health of this carer over the rest of the festive period. The 7 types are Physical, Mental, Emotional, Spiritual, Social, Sensory and Creative rest.
The following is a link to a Rest Quiz, which I have taken. The quiz can be found here https://www.restquiz.com/quiz/rest-quiz-test/. This shows rest deficits, and where the different elements need work. Seeing as anything with a score over 35 shows that this area is negatively impacting my life, from my results I think it is safe to say I am screwed. And not in a fun, sexy way. Nothing is showing that I am getting enough rest. Not one single area. The closest is my Sensory rest, which I guess might show the impact of me trying to stop using my phone quite so much during the day.
From a physical perspective, I know I dont usually get enough sleep. My exercise routine is messed up as well. I do a Peloton spin class most mornings, except when my back is playing up. I dont so yoga or pilates or the like – maybe I need to start? I am past 50 now. I will look into this. Reducing headaches would be good. I have constant tinnitus which I am sure is partly stress related, so I have to prioritise rest.
I am surprised by my mental rest. This is an area I have worked on alot. Mindfulness and so on. It is tough in the modern world to turn off the world though, and feels like being selfish. Well, self care isnt selfish I now understand.
Spiritual rest in its presented form is tough. I am not overly religious or spiritual, more scientific, but have been working my way through a book called The Artist Way by Julia Cameron, and one of the main threads is getting in touch with the inner creator, referred to as God for ease. So you could say I am now working in a spiritual way through that book, and learning to get in touch with my inner creator. Early days, but I feel the benefit of daily journaling each and every morning.
As a man from the Midlands, we dont express our emotions often. Being authentic is not natural, we keep it bottled up. However, despite the high score, this is something I do work at. The previous mentioned journaling, and even this blog all help me to get the shit out of my head and into something else. I dont read the journal after I write it, so that feels like being able to expel the crap and re-balance my head. This one is a work in progress.
Social rest is choosing who to spend your time with as I understand it. I said earlier that my social battery runs out easily, so I know this is of vital importance for me. I need time alone, and as a fulltime carer, again this is something I feel guilty about taking a break. I go to work all week, and dont want to do much at the weekend, whilst my wife is at home alot during the week, and so doesnt want to be at home at the weekend. I’m sure you can see the dilemma.
Sensory rest is an area I am getting more passionate about. Getting the phone put to one side is tough, but I do feel the benefit. Almost back to the mindfullness. Down time from all screens, lose yourself in a book is the best thing for me. Along with the Peloton. I can forget other stimulation and recover my head.
Finally Creative rest. For me this is the part I am most keen to recover. The book I mentioned above is an attempt at that. Learning how to bring back my inner creator and recover the person I once was, that has been buried beneath years of working and then a decade of caring. He is in there, I must recover him!
The quiz is eye opening. There are links to other resources. Self care is something I am getting more interested in. We do not have an infinite ability to keep going unchecked, and almost need these little interruptions (like my breakdown) to remind us to look after ourselves. Rest is important, and I never realised that we could break that simple term down into different types. Rest was always having a nap when I was growing up, I guess we hadnt learnt about the ways of mindfullness or self care, or at least didnt acknowledge it as such. I have to get over the guilt of prioritising me, and realise that without that I am no use to anyone.
Thanks
Thanks for reading, and if you like what I have written, maybe consider buying me a coffee. Also please go back and look at the previous My Wife Has Cancer blog posts, where you can see how our story started, and some of the struggles over the last 9 years.
After our eventful summer (see my previous post on My Wife Has Cancer https://mywifehascancer.blog/archives/948), we were back at the Marsden hospital in Sutton last week for blood tests and a follow up consultation. Considering it wasnt that many weeks ago when my wife was admitted and put on a drip for a week, we were fearing the worst.
However the calcium levels were back to normal. I dont understand what has happened, and am probably still processing it all. Somehow, from a position where the calcium (apparently caused by worsening disease) was dangerously high, it has now dropped back. The medicine obviously works. This is great news.
So why did I feel so down afterwards? I think I havent quite processed everything that has happened, and after the intense stress, am still casting around to get clarity. I am frustrated that my wife is not getting any treatment, and whilst recovered from the shock of the summer, is not going to get any better from this time on. I want her to be given something, anything to fix her, cure her, and make her better.
I guess as carers we all want things to go back to normal. We want to have the life we had before. I want to have the things we worked so hard for before cancer struck. I want to have a life where I can walk in the house, and not be greeted by my wife comatose on the sofa because she had a friend round for an hour during the day. I want a wife who doesnt look like the slightest breeze will blow her over, and the slightest fall will break her bones. I have mentioned before about how the physical relationship can change following diagnosis (https://mywifehascancer.blog/archives/534).
At times it is obvious that whatever happens, our relationship has changed significantly. (I wrote a maybe slightly regrettable blog about this once on a previous My Wife Has Cancer post https://mywifehascancer.blog/archives/802). I do feel a little like the driver sometimes, particularly being asked to sit in the car park and not come in.
We used to attend meetings with the specialist together, but that changed during Covid when they went on to zoom calls, and then rarely back in person. And now I feel angry and annoyed at the situation, helpless and unable to do anything that seems to be helping, aside from being that driver.
Mentally for me, being told that yet again things will continue as they are, pushes me back into the anticipatory grief cycle. (Mentioned here on a a My Wife Has Cancer blog about grief https://mywifehascancer.blog/archives/387). I go through anger, and depression, bouncing between the two. There seems to be no way out of the circle, and just as I feel things are getting better, something will bring the bad thoughts back in again.
Today is (Sept 10th) is World Suicide Prevention Day. My bad thoughts have never reached that state, but I have been touched by the impact of suicide. A couple of years ago my sisters boyfriend hung himself, and she found him, having missed some calls from him right before he did it. She has still not recovered from the experience. But you would not have known how deep his feelings were had you met him. People can keep up their lives despite whatever is going on behind their eyes. Like the clown, there may be sadness behind the smile.
And I sometimes feel that is how I am. I put on the face, and attack the day, and no one in work would know how things are at home. But there are days when I wonder how I will get through. The crying in the mens room. The angry punching of the steering wheel in the car park.
I have very little capacity for setbacks, no matter how small. A light on the car dashboard will have me worried all day. An email question I read in the evening will prey on my mind all night. And yet, I will also find myself struggling to deal with small tasks, losing my focus and drive and motivation. Back to the grief kicking in again.
And back to wishing that the light on the car dashboard, or the straight forward email question were all I had to worry about.
Thanks
Thanks for reading, and if you like what I have written, maybe consider buying me a coffee. Or probably better make that a herbal tea of some description after the discussion on stress. Also please go back and look at the previous My Wife Has Cancer blog posts, where you can see how our story started, and some of the struggles over the last 9 years.
Here at My Wife Has Cancer, we’ve had a couple of weeks off after school and university term end. The kids both had a great end to the academic year, making us so proud of them both. A first year of Uni has led to a first equivalent set of exams results for my eldest, and my youngest ended the year with an achievement recognition. They both deserve their summer breaks.
My work gave me the news that I would be leaving sometime during the 2Q of next year. As previously mentioned on My Wife Has Cancer (https://mywifehascancer.blog/archives/929) this was announced back in March. The process took bloody ages, and to be honest the motivation in the office has fallen through the floor. What did they expect – telling everyone that the office was closing and there would not be any jobs available elsewhere. Strangely enough most people dont feel a great deal of loyalty at that point.
We needed time out then. But of course the universe doesnt like us to have nice things, and so my wife picked up a virus or infection of some description (bacterial apparently, needing anti-biotics to shift). She had a slight cold while on holiday, but since we got home had been feeling exceptionally fatigued, and unable to eat.
This is a concern, as she looks like a little bird as it is. She reminds me off my grandmother in the years before she passed, tiny and weightless, with limbs that show the bones through her skin. There is very little meat on the bones at all, with her clothes hanging off her.
Then, the universe decided to play its next card. Two weeks ago, our doctor calls to say that her calcium levels are very high, like off the chart high. This is the reason for the fatigue and lack of appetite. It is also a really serious thing, and I understand a signifier of the cancer having spread further.
We were told to go to the A&E, where she would be put on a drip to wash out the calcium, and reduce the levels. One night in A&E turned into two nights in the local hospital, before turning into a transfer to the Royal Marsden in Sutton, the cancer specialist hospital. Which was where she stayed for nearly a week, getting slowly better, and slowly going mad with boredom.
What was extra hard was that we had arranged to visit some family in the Channel Islands, so while she was sleeping I spent my time on the airline website or on the phone attempting to change her flights. The children flew on their own (the flight is only 40 minutes in a twin prop 12 seater plan), while I sat at her bedside, swapping with my mother in law to go into work. Then after a few days, we decided I should keep my flight, and join the children.
The issue we had was the race against time to clear her for travel. There were limited flight availability, at least direct due to the holiday season. We missed one flight she could take, then another, and were left with nothing in sight.
But somehow on the Monday morning last week, a direct flight appeared for the Tuesday. She had been allowed home for a few hours on the Sunday, so things were going in the right direction, but could she be discharged in time? The answer was yes, and so she arrived at Southampton on the Tuesday for an early flight, then to be told there was a delay, and the flight would be 4 hours late.
This was not a great message when you have a bad back, and are uncomfortable sitting down. But she managed it, and got there, and had a great few days, weak, fragile, not eating enough, but determined to be there. I dont know how many more times she will be strong enough to make that flight, so it was important.
All of the symptoms that my wife was showing are the ones to look out for, and to be honest are really quite hard to distinguish from an ill cancer patient. The patient may feel unwell, be more tired than usual, and be off their food, amongst other potential signs. Tough right? Sounds like any virus someone may pick up, especially when their immune system is compromised anyway.
And it cant be prevented. Nothing you can eat will change this, when caused by advanced cancer. Treatment, in the form of the fluids to wash it out of your system, or injections of certain types of drugs will help lower the calcium levels. And scarily if you miss these common symptoms, the seriousness will ramp up, potentially leading to fits, problems breathing, or unconsciousness. We are now on red alert for any change, and will be heading straight to the doctors with any sign of these symptoms. More stress and anxiety to add to the list we have accumulated over the years.
So how am I feeling? It was yet again some of the most stressful days of my life. Yet again, I got to witness the early days before the medicine takes hold and while my wife is often sleeping. I get to hear the early worried diagnosis from A&E doctors, before her specialist gets involved and puts their minds at ease (my wife’s blood results shouldn’t exist in a healthy person, but somehow she can cope, meaning new doctors fear the worst any second). I then am usually working or looking after the children when her meds kick in and she is awake, while my mother in law will sit with her. My role will pass unnoticed and forgotten.
The trauma of all of this take a long time to fade. I am writing this on My Wife Has Cancer, 2 weeks post admittance and do not feel back to the level I was the day before then. I don’t think this is PTSD, but it is some form of mental problem for me. Years of constant stress and strain don’t fade easily. The short term incidents like this knock us out of our regular routine, throwing away my method of trying to cope with the long term stress impact. The healthy eating and exercise take a back seat to driving to and from hospitals, and eating sandwiches from the coffee shop on the ground floor. Then there are the days when tea will be picked up from the supermarket and eaten at 11 pm.
I am amazed at how quickly my wife seems to get over these events. She can be hospitalised, but within a couple of days following her release, whilst still tired and recovering, she will appear to have processed everything, boxed it away and be attacking the day the best she can. There is definately a determination in the minds of people who have faced death, and come out the other side. Something we can all learn, but it is hard having watched the doctors and nurses do their work in those early days to recover as quickly.
Thanks
Thanks for reading, and if you like what I have written, maybe consider buying me a coffee. Or probably better make that a herbal tea of some description after the discussion on stress. Also check out the previous blogs on My Wife Has Cancer, where you can read about our back story.
Its been bloody hot here in the UK the last week or so (though it feels like forever). A heatwave, and as a country we are not designed for it. Our houses are built to retain heat, not cool down, so every night it feels as though we are sleeping in an oven.
Last night it was impossible to sleep, and I woke up feeling like I had the worst hangover. It was really unpleasant.
My cat, a nice long hair burman, is struggling, unable to work out where to lie. She is just desperate for someone to turn the temperature down. My children are both home and over heating. And worst of all, my wife really struggles in extreme heat.
Of course for most people, heat exhaustion and heat strokes are a concern. The body reacts by pumping more blood to the skin, making the heart work harder and harder. We can feel dizzy, and fatigued, and probably get a headache and stomach ache.
Now couple that with a weakened body, and you can see my concern. My wife is fatigued at the best of times, so by getting hot and even more tired she will be worse. She has stomach problems, and struggles to find things to eat most days, and in the heat is finidng this even trickier. And we dont want to risk an illness, sickness or itherwise that could clear out the fluids in her body.
She has a limited palate for drinks, and isnt a fan of water (it was the one drink she sipped during the first rounds of chemo, and like carrots she now cannot stand it). And then to top it off, she had a splenectomy and various other organs removed many years ago (detailed in this old post https://mywifehascancer.blog/archives/50), so cannot easily cope in extremes.
What can you do? We have fans (lots of fans) in every room. We have a huge amount of ice sat in the freezer. We usually sleep in seperate rooms, but as luck would have it, this week by mother-in-law is staying, and so I am in the same room as my wife (hence last nights terrible sleep). We ensure she has small amounts of food to eat, little and often. We try to keep her out of the direct sunshine.
This is no more than most people do, but for us the worry is more tangible – we have been through many health scares, and know how quickly things can go south. A heatwave could be the tipping point where her hear decides it has had enough. I hope not, and we are doing our hardest to make sure we keep her temperature down and ensure it doesnt.
For a quick update, following my last blog (https://mywifehascancer.blog/archives/936), Ive started reading The Subtle Art of Not Giving a F*ck by Mark Manson (available to buy here from Amazon https://amzn.to/406TbS8). This may be a self help book, which is not my usual style, but my mental health is not the best, and this is helping me to understand how to focus on the important things, and not waste time on the less important things.
It is a long road, but I am finding it useful. I am refocusing my to do list in work, and not sweating the small stuff, while focusing on the things that are really needed. I have realised that life is about making choices, and we make choices everyday, so I am learning how to make the choices that make me happy. Hopefully this will help to make me a better carer and husband.
Thanks
Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.
Life can feel like hurtling through space on an out of control spaceship at times. You need a space anchor to be thrown and stop you (are those a thing? It would be like a ships anchor, but hooked to what – a planet I guess? Need to invent it somehow).
There are so many things that come hurtling towards you, that you need a way to stay fixed to something, and be grounded (not sure the space anchor line works with that now, but I’m gonna go with it, I’m too far in to change). Anchoring keeps you grounded, and able to survive the challenges you face in life. A great article by Dr Jessica Brown https://www.drjessicabrown.com/theblogposts/2019/4/24/whats-your-anchor#:~:text=It’s%20the%20thing%20that%20keeps,makes%20you%20who%20you%20are., explains how your anchor is your why, the essence of who you are. This can be spiritual beliefs, family, meaningful work or hobbies, or daily rituals. We’ve all seen those short blogs by people saying what their morning routine is (‘I get up at 4, spend 2 hours in the gym before eating a spinach smoothie and then sending 300 spam emails’ type of thing.) But this is grounding, having an anchor.
Why is this something that has come to mind for me? Well, I have alot of moving parts in my life we could say. My wife has her illness, with all the uncertainty that can bring (a prime example here https://mywifehascancer.blog/archives/922), which means to me it feels like my family anchor has gone. That lifetime partner, the one who you chose to share your life with, living with the knowledge that will not be the case twists your melons, and slowly breaks your brain. I have to work extra hard to stop the negative thoughts and worrys from taking over.
But it also means that the anchor of coming home after a hard day at work is gone – I will come home and start my second job, caring for my wife and making her life as good as possible. I put my daily concerns to the back of my mind, as in context they are not anywhere near as significant. I have written before a long ago that the joy of Friday nights has now gone, that feeling of looking forward to the end of the work week doesnt come for me.
And on the subject of work, because of the worry about my wife, my work does struggle. I find it hard to concentrate on days when we have a hospital appointment, even if all I am doing is acting a taxi service as she wont want me to come in. To switch between sitting in a hospital car park to jumping on a zoom call and solving accounting problems is immense, and while I found that much easier 5, 6 or 7 years ago, doing it every few months for years on end has taken its toll. The brain cannot keep undergoing that level of stress for too long (https://mywifehascancer.blog/archives/929).
Couple with that right now is the ongoing redundancy process I am involved with, and the length of time this is going on for. Not a happy environment in the office these days. So work isnt an anchor either (though I’m not sure it ever was).
Family should be something to rely on, but as mentioned above, with my wife ill, our home life can be very erratic. Our daughter is away at Uni, so we dont see her much, and have to try and help her to cope with her challenges in life. Our son is 13, and he has all the challenges of modern school, and the demands on him to deal with, whilst also having had a sick mother for over two thirds of his life. If that doesnt lead to therapy in later life, I dont know what will. So again, that is another anchor that is unsteady.
Other family live away from us, but we also have lots of good friends around. And we have some really good friends. As the Gene song says “It’s time to tell my friends I love them”. (Did I mention Gene have reformed, and I have tickets? Our favourite band of 25 years ago, who we saw at every London gig are back baby). They look out for me. Friends from different stages are anchors in different ways – the school friends who still share the same jokes 35 years on. The Uni friends who we have drunk way too much with, and grown up with, attended each others marriages, and are god parents to their children (Hi Aurelia!). And the friends made during our children attending school, bonding over a love of music and red wine. These are the relationships we need to develop and feed.
My interests have waned since the pressure of the last few years. Attention span for many folks has shrunk, particularly post covid, and I am no exception. Whereas previously I would read a book for hours on end, I feel the need for that dopamine shot of the phone, checking social media or the news, searching for that next high. And like most drugs, that high wears off pretty darn quick. But by then the damage is done, and a few minutes is wasted, followed by a few more minutes, until guilt kicks in, and your brain tries to realign. But then thinks, well the day is already wasted, so why try?
I have to force myself to enjoy my hobbies, and this is a good piece of advice I try to push on my son (my daughter already has this down pat). Put the phone physically somewhere else. Listen to a record end to end. No skipping tracks. Read a full chapter of a book. Watch a tv programme without the phone constantly on wikipedia. Watch football without texting a friend to gloat. That last one would be harder if I wasnt a Manchester United fan. Its been a tough few years. I dont mind not winning, but we are just awful to watch. My son has only known this rubbish.
I think the main crux of this is that life isnt easy anyway, but when caring for someone else, the time to look after yourself and find your moments of pleasure and happiness is not easy to find either. With all the demands on your time, you can feel guilty trying to look after yourself. After all, why prioritise that, when it is your wife that is terminally ill? I can rest later cant I? But what if that later never comes? We have been lucky that my wife has exceeded her prognosis, but in the maelstrom of those early years bouncing through chemo appointments and hospital visits, I would argue that I didnt properly look after myself, and am now reaping the crops of that (terrible metaphor I know).
One of my close friends said recently that I have never been the same since my wife had her stroke in 2018 (https://mywifehascancer.blog/archives/66). And when I look back to that time, it was one of the most stressful experiences anyone could have, spending days and weeks travelling to a hospital to sit by the bedside of my wife in a coma, having watched them put her under, not knowing if we were to see her again. But at that time I didnt think that way – I assume everything would work out fine, dopey optimism in my consciousness, whereas my subconscious must have been screaming to be heard. I didnt work on my mental strength, and I lost my anchor at that point. We were all changed from that point on.
So what is my advice to anyone dealing with similar issues? How do you find your mental anchor? Look after yourself as a carer. Thats it. You are useless if you do not look after yourself. Dont prioritise yourself over your partner or whoever you look after, but dont let it slide. I say that from bitter experience, as to not look after yourself means that it will take much more hard work to keep yourself going. Get the routine going, get hobbies and exercise into your day, meet with friends and talk about music or football or rugby or Disney or whatever the hell you enjoy. Remember the essence of who you are, and dont just be a carer, be yourself, who also has the super power of looking after someone else who needs your support.
Thanks
Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.
It feels that I only add a post here after a long time, triggered by some massive traumatic events that have destroyed my mental health, and had a big impact on our home lives. Well, in the words of Whitesnake, Here I Go Again.
I am still getting over significant events for both my wife and myself, both of which have taken a long time to process.
My last post (https://mywifehascancer.blog/archives/922) mentioned the fall my wife had, and the injury it caused her. The scar has now gone down, though will be permanent, but the mental healing is still ongoing. I cant get rid of the picture in my mind of the pool of blood I found on the floor when I got back from the office, the congealed way it clung to the cloth I used to clean it up. I am struggling to shift the concern of what could have been, and what very nearly happened.
My wife is always keen to keep pushing, and keep doing things. She is amazing in that aspect, and it is one of the reasons she is still here. However, the whole event was a reality check (or at least should have been). She had planned to take our son to visit a friend, on her own, and I had to persuade her to call that off. There was no way I wanted my 13 year old to be the one to find her crashed on the floor, a wound in her head and blood all around. Thankfully in this instance she saw sense.
But then just after coming to terms with that event, my company announced a round of redundancies, which includes my role. The whole office is in shock, unable to understand the timing and angry about the loss. This was two weeks ago, and i have now had my first official one to one session, before I will probably find out my fate in a few more weeks.
I have worked for the company nearly 18 years, and it is quite wrench to think I will more than likely be off. There are roles being retained, but they involve relocation, and to link back to the start of this blog (almost like I planned how it would pan out), I cant leave my wife on her own all days and be reliant on trains to get back to her. I currently live close to the office, a deliberate location because of our circumstances. Moving house is not an option either.
I feel that everything in our lives is in flux, like I am standing on shifting sands. I cant rely on much to be stable, and this is tiring. I mentioned burnout in the previous blog, and this has gotten much worse. I struggle to concentrate on things and find I dont enjoy my interests as much as I used to. I have to force myself to listen to music properly, to actually sit and read a book, putting my phone away in another room. I have to take my work tasks and bite sized chunks, focusing on only a few targets each morning, to avoid being overwhelmed.
I am trying to rebuild my mind, and get back my ability to deal with the challenges we face. Despite mentioning it before, I havent really fully addressed how I am in my real life, and I think have really just barrelled straight through, pushing on because that is what I do. And I have hit the wall now.
We will survive my potential job loss. I hope the experience I have and the skills I have will help me find another role. I am also sure my wife will continue to gain in strength, a little each day.
I need to work on my mental health, and get to grips with what I am sure is burnout. I have had eight years of stress with dealing with this illness, a length of time including numerous highly stressful situations and emergencies. You can read about them in the following links, from times where we had to rush her to A&E ahead of being put in a coma https://mywifehascancer.blog/archives/60, having a stroke https://mywifehascancer.blog/archives/66, and her mammoth operation https://mywifehascancer.blog/archives/50.
The following link has a great summary and description of burnout https://mentalhealth-uk.org/burnout/. Burnout can occur when you have repeated and prolonged high demands that exceed resources, and is seen typically in a workplace setting, but can be experienced alongside pressures such as being a caregiver. It is a state pf physical, mental and emotional exhaustion.
To deal with this, I am trying to get more excercise, practice mindfulness, and drink less alcohol. It is hard to keep on top of your mental health when challenges are constantly thrown at you, and it does feel isolating. I have a good friend I can talk things through with, and am trying to accept that I cannot do everything perfectly. As I said earlier, I try to break down work tasks, and only focus on a handful at a time.
All of these coping mechanisms are helping my mind to get better, but it is hard. I want everything to be fixed now, both for me and for my wife. However it has taken us 8 years to get here, and I doubt it will be a few weeks or even months to get us back to the top.
Thanks
Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.
I havent written here for a while, and to be honest am just scrapping what I did write a few weeks ago. I had this great piece about how live music was beneficial to my wife, after I had been able to take her to see the Manic Street Preachers do a small gig in Kingston ahead of their album launch.
It had been an afternoon show, and by phoning ahead I had secured seats in a roped off disabled area. This meant my wife had been able to get in early, and be seated ahead of the crowds, not having to worry about being knocked or jostled, and she had a great view. The band as always were amazing, playing a mixture of new and classics. Even some tracks (She Is Suffering as an example) I hadnt heard in a good few years of seeing them. It was perfect.
It was maybe the first live concert she has been to in over 5 years, so was a big thing. We had then gone to see our daughter the next day, having lunch out, and doing some sight seeing with her, so on Sunday night my wife was really tired, and didnt eat much when we got home (I scoffed a chelsea bun, as is tradition when visiting Cambridge).
I was in a meeting at 10 on the Monday when I received the first call from a mobile I didnt recognise. It took to the 6th or 7th call before I excused myself and called it back, realising that the call wasnt likely to be someone selling me insurance. It was my wifes spanish teacher.
She had come to our house to give her regular lesson, and when she arrived had heard my wife calling. She had fallen in the hallway, and was lying in a pool of blood. Luckily she was able to get to the door, and let the other lady in, who had called me and an ambulance. I arrived in ten minutes, to my wife sitting on the floor by the door, a towel on her head, cushions supporting her, and a lot of blood on the hall floor.
She had got dizzy while cleaning up in the kitchen, and coupled with her very low blood pressure, had fallen face first on the floor, basically landing on her forehead. It is amazing how much blood comes from a head wound, especially from someone who is on blood thinners. I managed to tidy up, while her teacher sat with her (the last thing we needed was the cat walking through the mess and trailing it over the house), and we were lucky an ambulance arrived within 30 minutes. Not for the first time I am thankful for the NHS.
I wont go in to the full details of the rest of the day. Needless to say there was a great deal of sitting around, and tests, uncomfortable seats and beds, before we were able to get home. The cause we think was the very low blood pressure, coupled with overdoing things the day before. Thankfully no other damage was done to her body.
It has been a big wake up call. I think we were getting a bit blase about how serious my wifes illness has got. Her body is tiny, and she doesnt eat enough to put the weight back on, and in fact barely enough to keep her weight stable. She doesnt have the strength to be safely around the house on her home most of the time. The chance of her (rightly) exercising her independence and determindly doing house work leading to another fall is very high. I have talked about being worried about her being left alone (in fact almost a year ago https://mywifehascancer.blog/archives/879), but to have it brought to the surface so starkly is sobering.
It has taken four weeks for her to be getting back to normal (whatever that is). Her head has permanent Harry Potter style scar. I have worked from home, she has stayed with her mum, and her mum has stayed with us. We just sit waiting in case she needs anything, listening out while she has a shower.
We have an alarm necklace thing on order, one of these things that will go off in the event of a fall, and automatically call me or the ambulance. They are marketed at the elderly, but really should also be aimed at younger terminally ill people as well. I will feel worried when I leave her alone for a while, but will have to get on with our lives somehow.
Mentally it took a toll on me. I feel guilty admitting it, because my wife had things much worse, but I think it was a week to get over the the trauma. Coming home to a pool of blood, and another hospital trip is not easy, and my stress levels went through the roof.
I am fairly sure I have been suffering from mental burnout, as I really do struggle to get motivated, feel tired and am irritable. I am trying to address this now. I journal in the morning each weekday, get my thoughts on paper, and am trying to put my phone away much more. I am trying to do more exercise, which has been tough when caring takes alot out of me as well. Balancing getting up early to do a spin bike session, with getting enough sleep means one or the other sometimes misses the mark. But I have to maintain self care, something I have not been maintaining. I have focused on my wifes needs and caring for her, neglecting myself. After all, I am not dying of cancer am I?
But this is foolish, and the place my mental health has got to means that I cannot look after her effectively, I cannot do my job effectively, and I am spreading myself too thinly. No one wins.
Which is where the music comes in. The Manics helped us both before this all happened, and this last week I had tickets to see the Levellers play in Guildford, doing an acoustic show. It was great, and just what I needed. I feel lucky to have some friends to do things like this with, because I miss being able to do them with my wife. I really miss dates, and sharing a bottle of wine, and weekends away just the two of us, and seeing our favourite bands. This has all been stolen from us, and every single day of my life, my chest hurts with the pain of wanting these things back. The hole in my body feels so real, and so large that it can overwhelm me.
There is a song by the Levellers that always hits me. Julie tells the tale of young woman, living a really tough life, and the line that gets me is “She felt alone in a crowded room, cries when she heard a happy tune”. I have not experienced anything that this poor girl does, but I can understand those sentiments.
Thanks
Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.
This time on My Wife Has Cancer I wanted to talk a little about what our day can look like. This isnt meant as a whine, or a moan, but to try and show what has to be done when someone in a relationship is terminally ill and struggling.
This will be different at the weekends and weekdays, but a typical weekday will start at around 6am, when I get up. My sleep will have been broken, because my wife is a light sleeper and so will have been disturbed by me breathing, or moving in the night, gotten frustrated, and woken me up. So we both wake up grumpy. We have tried to remedy this, by me sleeping in the spare room, but that feels a little like we are giving up on our marriage, plus the bed is slightly too small for me.
I will head downstairs, having collected the first batch of washing to put in the machine. By getting up at 6, I have the time to do one load and put it on the airer before I need to leave for work. I can then put another one on, to then sort when I get home. My wife can put washing on, and get it out of the machine, but she does not have the strength to take it upstairs to hang out. Or even bring a load downstairs.
I will then make coffee, and empty the dishwasher, whilst waiting for our cat to wake up and demand food. If I am lucky she will consent to a cuddle, but this can be a rare event, as she will often prefer to howl at the darkness outside (dont we all!).
The first cup of coffee then can be taken while I have a few minutes to try and set my mind for the day. This either takes the way of doing some meditation, or doing some writing. There isnt enough time though to do a great deal of this. I do prefer the early morning when everything is quiet, as I can have some time for me, which is a rarity during the week.
After the 9 years of this whole journey, my mental health is in pieces, and this early morning moment goes a little way towards settling me. It doesnt do a full job, I feel nothing could.
I can then get in the shower, and get our son up. We will then have breakfast together, before I take my wife her cup of tea, and the first set of tablets. We have a tick list, and a box full in the kitchen cupboard, with a carrier bag full of spare tablets in the garage. We have to put in a new prescription every three or four weeks for a new supply. Thankfully in the UK, cancer means you are medically exempt from paying for prescriptions. Thankyou NHS.
I will leave my wife in bed (despite being concerned around leaving her alone https://mywifehascancer.blog/archives/879), and drive my son to school. This is easier now that my daughter is away at University, as I only have to make one stop before the office. I say one stop. If there are any groceries needed, I will stop en route and pick them in the morning.
My office is only 15 minutes from home, and so if there are any concerns I can get home to help my wife. I will pick up my son after school, and we will be home by 6. My wife will be trying to make the tea, and usually manages it, so I will finish it up, and serve.
To stave off the boredom my wife will have tried to do some things during the day, whether having a friend round, or having a Spanish lesson, or tidying up, but the smallest thing will tire her out for the rest of the day. After we get home, she will most likely collapse on the sofa, and stay there for the rest of the evening, covered with a blanket, watching quiz shows. She will eat something, which has to be before 7.30, and has to be reasonably light.
Food is not going down well for her right now, and meals will get stuck. If we are really unlucky, her evening meal will cause her to be sick, but usually it will take a bit of time to settle. Whilst she recovers, I will tidy away the dinner stuff, set the dishwasher, wash up and sort any remaining laundry she will have left by the machine. I will then get any other jobs done that require attention around the house.
This will include trying to fix things that may have broken during the day. My wife has a lack of peripheral vision following her stroke (detailed in this early blog post on My Wife Has Cancer https://mywifehascancer.blog/archives/66. Alot of history can be found in these from 2019). This lack of vision means that she may knock things, like a glass out of the cupboard, or a picture off the wall. Her lack of strength means that she may have started doing a job around the house, and yet had to give up, so I will go round the house and tidy things away, finish small tasks and so on.
My wife will be lying on the sofa all evening. I feel bad about the evenings, because she will have been on her own alot during the day, yet we cannot all spend the time sat with her watching the television. As detailed above, I will be doing chores, and then maybe catching up on some work, while the children will have homework to do. We may have 30 minutes or so before we go to bed to spend time with her. The balance is hard between trying to keep the house and lives going and spending time with my wife.
If we are lucky, we may have some social event. I love live music, but have had to cut down on the gigs I go to due to the expense and time. I may meet locally with friends every few weeks. I feel bad being out in the evening because I know how hard it is for my wife to manage at the end of the day.
My wife may be invited to meet people during the day, but rarely will she accept in the evening. We havent managed to do a ‘date’ night for years. Loud pubs or restaurants wont work for her hearing, and anyway the concern will be around food – something getting stuck and her being sick can happen at very short notice. We have really decided to cut back on that without having the conversation to say so – a victim of the cancer.
We have all the hard parts of a marriage, the admin, cleaning, tidying and worrying, without the fun light stuff of dates or a physical relationship. I cant ever see those returning.
Weekends will be different, as we will be at home not work or school. We do have to plan carefully what we do, as long car journeys are not great for my wife, so we have to leave early when going long distance to visit family. Local trips also need to be carefully considered to ensure that the place we go to has the right facilities. You discover that there is a great deal of planning when caring for someone with the physical and mental problems my wife has.
Hopefully this will give a snap shot of the life we lead. I know people have life alot worse, and as I said, I am not moaning here. This is laying bare the reality I lead, as I know many of our friends and family are shocked when they see the reality. They may only see the times when my wife has managed to get out of the house, after a day of resting, and will think every day is like that. Unfortunately not.
Thanks
Thanks for reading, and if you like what I have written, maybe consider funding some of my coffee or beer habit.
It seemed a momentus day in the UK last week, when parliament voted in favour of the first reading of a bill on assisted dying https://www.theguardian.com/society/2024/nov/29/mps-vote-for-assisted-dying-in-england-and-wales. This is the first step in legislation that will allow terminally ill adults with less than six months to live to be given the right to die. Theoretically this will give more choice for these people over how they die.
The debate brought out some horrendous stories from MPs from their constituents of people dying in horrible circumstances, experiences that no one should ever have to go through. This was countered by concerns over misuse of the bill, that could open the floodgates to less controlled usage of the guidelines. There were even the usual hysterical suspects talking about state sponsored killing.
These are my thoughts, coming from the perspective of the carer of someone who has been given a terminal diagnosis. Straight up, I suspect as a family we may have been close to being under the regulations at some point. My wife was given a 12 month diagnosis in her first few months of treatment, and was later hospitalised in a coma following adverse reactions treatment, so could assisted dying have been pushed towards us at that stage?
How would we have felt? My wife has been in some pretty desperate situations, and when in her coma was struggling to get back to life. She had a stroke during the recovery, putting her in an even more dangerous place. Would the endless pain, and seemingly endless unconsciousness have led to me having a conversation in a deserted corridor with a doctor, reminding me of this legislation?
In my tired and emotional state, worried about her ever regaining consciousness, wondering whether she would ever have a quality of life, would I have agreed, thinking it was for the best at that moment in time? As far as I knew, she would never recover. I vividly recall pacing the streets during breaks when my mother in law sat with her, not knowing where I was going, not sure what I was doing, not even sure of what was happening, but knowing I trusted the doctors to get her back. Would I have trusted the doctors when they said assisted dying was the best way forward?
But now she has made a recovery (I cannot say full, as she still has issues caused by her darkest days, lack of eyesight, food intolerance, and hearing and cognitive problems). A decision to end her life would have meant she and us would have missed out on so much we have managed to do in the last few years. I am less of a risk taker (I’m not even sure that is the right phrase here, but I will go with it), and I would have been inclined, unless told otherwise definitively, to leave things as they were. I couldn’t have made that decision.
I didn’t even want her to have her peritonectomy ‘the mother of all operations’. I thought that was too risky.
So where does that leave my thoughts on assisted dying? As a carer, I feel there are still extreme cases that warrant it. The very end of life, where death is a given, and where the process will entail pain and suffering. Why should that person, that family, have to go through that process. One of the hardest things I have to deal with, is knowing the end is coming. I don’t know when, but I know we will reach that stage. But I cannot comprehend knowing the end is coming in a few days, and will be accompanied by pain, and screaming and suffering. Those are the circumstances for assisted dying.
Which brings me to my next point. For this legislation to work, then the care given at the end of life has to be the very best. This has to have the very maximum funding it can as called for by some MPs. (https://www.theguardian.com/society/2024/nov/30/palliative-care-assisted-dying-vote-layla-moran-diane-abbott). The nurses who work in this form of care are the best of us, and need to be supported so they can give all the care and loving patients need.
I worry that in the UK, this bill wont be implemented correctly. The way our parliament works, the amendments will have a political edge (we have lots of culture wars type of MPs, who will say this is state sponsored killing, using anything to attack the current government), when what the law really needs is really tight legislation to work properly. There are circumstances where the end is coming, and patients need this type of help, but we have to make sure there is no avenue for abuse of the power it gives.
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Turing 50 has been good yet strange in equal measures. My wife also turned the same age two weeks before (so for that period I was claiming to be a decade younger….), and in light of that the focus has been on her.
It is amazing to think that she is still here to reach this milestone. She has endured some terrible things over the last 8 years, and still does, yet is managing through (I think) shear willpower to keep on. She is skinny as a rake, has very little stamina, and has problems with food, drink, noise and her vision. I honestly do not know how she manages it.
We met up with some of our oldest and closest friends last night for a celebratory meal. I drove, just in case we had to make a sharp exit, but we managed to stay the entire evening. It was great, everyone in high spirits, especially as we hadnt all been together for a long time. My wife was inundated with presents, and felt really spoiled.
I sometimes feel on the periphery a little though. I have talked before of feeling jealous of people. I see folks going about their day, and I know I can not have what they have, that my life as a carer and husband to a terminal cancer sufferer restricts my and my families life. And I feel that when meeting with our friends. I know some have hardships, and we help each other through lifes problems, yet the knowledge of what my wife and I are facing can sometimes be too much to bear.
I have spoken of what happens when the anticipatory grief hits (https://mywifehascancer.blog/archives/869), and this can manifest itself in many different ways. I feel listless, and have a real lack of motivation. I find I dont enjoy the same things I used to. I cant finish tasks, and struggle to start new ones. My focus is shot. The many years of dealing with this have destroyed my mind. I cant conceive how may wife copes.
I’m pissed off because I want to try and better myself and try new things, but cant get started. I want to do something with my life, something that isnt just the job I do, but always feel I have this hand we have been given hanging over me. We cant escape and make things better.
An example is that I went on a business trip last week. I came back motivated, but stepped through the door to a long list of things that needed doing, and a stressed wife who had been worn out by her mother being here to help. The few days I had used to gather my thoughts and try to reset my brain were blown away in minutes, and I could feel myself being dragged back into the swamp we live in. A thick soup of non stop problems and stress.
I realise that often I come across as moaning about my life, when my wife has it much much worse. I know that fact, and that kills me. Sometimes I dont know where to go when I feel down, as my companion in life, my ‘soul mate’ has things a million times worse than me. Every conversation will automatically go back to how she is.
So, turning 50 has been strange. From feeling on the outer circle of a get together to celebrate my birthday as well as my wifes, to thinking that my life is getting away from me very quickly, and I have no control over where it is headed.
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