Cancer and the slow decline

Today I want to talk a little about what I find one of the hardest issues we face with my wife. She is currently in a cycle of not having treatment, which is great, as she can work on getting over her last bout of radiotherapy. We have had a summer break, been away, and now the children are back at school. The next scan is in a few weeks.

We do notice that she gets very tired easily though. And this will lead to her falling asleep early, into a dead sleep on the sofa at 8 PM if we have been out somewhere. The knock on to our family life, aside from her snoring over She Hulk, is that she will then awaken at strange times, and start to engage in cleaning or tidying. She always had an almost OCD mindset, but the cancer has made this much worse. Coupled with her lack of sight on her left hand side, we have to ensure things are done as she wants them to be. Which for the sight aspect is fine, but not so easy when it is because she has a whim and wants things done in a particular way. I feel we live on egg shells worried that we have put something away in a cupboard in the wrong place, and that the inevitable fury will reign down. As you can imagine it does not make our home life relaxing at all.

The last lot of scans stilled showed the disease now on the liver, and apparently some in her pelvis. I dont know now how much further this has spread, or how fast it spreads. She has some pain in the stomach area, which is where this journey started all those years ago. I feel that all we do these days is ‘kick the can down the road’ waiting for when we get something that will warrant a round of treatment of some sort.

And this is where the slow decline comes in. As an analogy, you have two options when taking off a plaster – fast or slow. One brings a short, sharp pain, the other a duller slower pain. Neither is easy, but sometimes it is best to get it over quickly. And as you can tell, that is what is happening here. My wifes decline is the slow pull, a gradual decline, and it leaves us with years of pain, never getting ourselves quite back on track. Things will never be the same as they were before her diagnosis, however I do feel we are being held back, the rest of us not able to move on. This sounds callous, and I realise that, but the other point is that my wife is not the same woman she was, she isnt able to do the same things she was before. At some point her quality of life will decline significantly enough that she wont be able to be on her own, and a final indignity will hit.

This slow decline has destroyed my marriage. We dont do any of the things that a normal couple do. No date nights, no physical contact, nothing that a loving couple can do together. Our relationship is as a patient and carer. I feel my life has been put on hold, trapped in a marriage now that is never going to improve. I cant move on with my life.

I dont want to leave my wife behind, I want to have the life we had, but understand that is impossible. But the life of a carer is a hard one – I am the one who takes the blame when something isnt right in the house, I get the brunt when she has been out with her friends and is then tired in the evening. I have to tidy away and look after the children and house after trying to concentrate at work all day. And I do all this because I have a duty. But it would be good to have some time off.

The thing I hate about writing that, is that my wife cant have a day off. And that is where the cruelness of cancer comes in. It is relentless, it doesnt give any respite, and unless you are one of the lucky ones, it will not end in a happy way. My family is trapped at the whim of this diease, waiting for the plaster to finally come off, knowing that only then can we rub the pain better, and move on. Sometimes it feels that we are all just hanging around. It would have been tough, but at least of we had lost her before, we would have been able to deal with the grief, instead of effectively grieving for a years on end.

To end on a different note, I have mentioned previously my love of music, and last night we watched the Taylor Hawkins tribute gig on MTV. I was gutted not to be able to go – I had tickets to see the Foo Fighters earlier this year, but that was cancelled when he died, and my brother in law was at Wembley. However, money worries stopped that for me.

I thought the gig was great – a brilliant tribute to an obviously well loved friend. Some tears, some laughs, and lots of amazing music. Violet Grohl and Shane Hawkins were there to carry on from their parents, and I hope my children honour their mother as well as they honoured their father and friend.

Global Mental Health Day

Today is Global Mental Health Day, and I thought it worthwhile putting down some thoughts. I’m not going to claim that I fully understand what it is like to have a mental health issue, but I do know that I am personally working through a variety of issues. I have seen counsellors, and through that understand that I am trying to comprehend a lot of factors from the events of the last few years. Grief for the loss of the way of life we once had, grief for the loss of the wife I had, concern at how things will turn out for her in the future, fear of what may happen at any moment, on top of the pain of dealing with the various traumatic events that have occurred. Now don’t get me wrong, my wife has lost so much more, but our lives have been changed 100% from where they were.

Why mention this today? Posters in my office are raising awareness of Mental Health Day, with a focus on suicide, and the need to ask people how they are – ask twice being a theme. And posters giving facts that most, if not all of us will answer 14 times a day to the question how are you, with I’m fine. I’ve done it today, you probably have. But today I know that that isn’t true – today was one of the days when I could feel dark clouds descending this morning, for no obvious reason, other than it being a nice morning, and not wanting to waste time at a desk. That triggered overwhelming thoughts of despair, and I have spent the day feeling like I am walking through water, and that at any point I may trip and go under. My heart is heavy, I feel unmotivated, and am struggling with doing anything. All I really want to do is go back to bed and stay there warm under the covers, blocking out the world. But when people ask that question, I force a thin smile, and reply, fine, what about you. Not many people know what has happened in our lives – it is my choice to keep it private in work, but it means that on days like this I fight my own corner. And I understand that is stupid, that a problem shared and all that….

I should respond with a not great thanks, few things on my mind, but we don’t do that do we. We bottle it up for fear of showing a weakness to the world. I also feel that unless I have a physical problem, it isn’t real – my wife has a real, calculable illness, we can see it, measure it – she has a right to feel depressed, but for the rest of us…

I didn’t know what I was going to write at the start of this, and am not sure if I have got where I thought I would. Just a splurge of words, but sometimes a splurge is better than nothing. I’m no specialist, but I know what I am feeling, and am trying to understand how to cope with it. I try to go for a run, or listen to music, but a lot of things that used to bring pleasure simply don’t anymore.

I don’t have an answer, everyone deals their own way. Keep on keeping on.

PS The following sometimes helps me: