I'm sitting in the back room of a Macmillan centre at a hospital near the coast, waiting for my wife to finish a course on mindfulness. Around the room there's an array of leaflets on how to cope with Cancer. Four orange chairs surround a small table and four blue chairs are in a semicircle with three occupants. Their conversation revolves around sandwiches, crocodiles and Eric Clapton's mother!
I've been in this room countless times over the past two years as my wife is receiving her own cancer treatment. Every few weeks we make the fifty mile round trip after she first had surgery, followed by chemotherapy and now immunotherapy. We've had highs, lows and everything in-between, but the one constant amongst everything is I've always been her unofficial carer.
People across the country every day of the week take up the mantle when a loved one falls ill. Just like having kids, no-one ever gives you a manual on what to do, you just have to get on with it and learn from your mistakes. So as I sit here, I wonder how many other carers feel as frustrated as I do when you watch the person you love slowly start to die in front of your eyes with this wretched disease, and you know there is nothing you can do about it.
Caring comes in many forms, ranging from giving someone a lift to an appointment through to clearing up vomit off the bed sheets at 3am. When a person is going through cancer you quickly learn to adapt to ever changing mood swings as they too feel extreme levels of frustration. The only difference here, is that you are usually the one in the firing line who normally cops the screaming and shouting, as they try and release their pent up anger. You know it's not personal, but its difficult not to be hurt.
To give you an example, this morning my wife asked me to get her coat, scarf and a bag out of the cupboard whilst she tidied her hair. Because I didn't do it in the exact order she requested, she flew into a rage. Sadly, her outbursts and examples like this are all too common and there are days when it seems I just can't do anything right in her eyes. She does apologise and admit that I'm not actually to blame, but merely she finds it difficult to express from mind to mouth what she's trying to portray. They call it chemo brain, as it's a typical side effect from when a person receives chemotherapy treatment. So if you're reading this blog and thinking my wife is a monster - she isn't. It's just frustration.
As a male member of the species I'm doing the typical thing of keeping everything to myself and not what I keep being told to do, which is reach out to others. For me, I find that writing helps me to "brain dump", and sometimes I produce masterpieces worthy of print, but other times my work is mediocre at best. However, as a carer, no matter how hard you try and keep things on the straight and narrow. No matter how difficult it is when you are being screamed at, and no matter how many times you stare into the abyss in the middle of the night; it's important to remember you are not alone.
Now I'm not the kind of person who can speak easily in a group. In fact if it is ever possible to avoid this kind of scenario then I would try at all costs to run away. But I have heard of circumstances where for some people this does work. Of course, you could also go with one to one counselling, but for me, that seems like a waste of money when you could say exactly the same thing to a good bunch of mates down the pub. People kept urging me to seek help as they could see I was struggling, so eventually I gave into pressure and spoke with a doctor to get the ball rolling.
The first thing they asked me was did I have any suicidal thoughts? This threw me slightly, but then I had to admit the answer was yes. It's true to say I've considered on more than one occasion what life will be like for me after my wife goes, and will I really want to carry on? The sheer thought of being lonely brings me out in sweats and I feel a chill run straight down my spine. I'm not a religious person and don't really believe in the concept of heaven or hell, but it would be nice to think that we would be reunited in the "afterlife" if such a thing ever exists. The doctor however, reassured me that my thoughts were in fact perfectly normal. But if I then started to plan how to end my own life, it's a whole different ball game. I was given a couple of phone numbers to ring to arrange an appointment with a professional, and that was the end of the consultation. But as of yet, I've still to make the call.
I don't know how much longer I will be a carer. I certainly never envisaged that I would be put in this position, so don't even know if I'm actually entitled to any assistance, financial or otherwise. As a self employed person I guess the answer is no, but if you are reading this and you can offer any help or advice then I would be glad of some input. We're hoping that the immunotherapy will at least keep the cancer in a state of limbo, and if it works then my wife should be able to receive this drug for the next two years. Last week we heard that the National Institute for Clinical Excellence (NICE) has turned down the proposal for her specific drug to be accepted into the NHS. This is on the grounds of amongst other things, its cost. However, there may be a reprieve in January when it gets reviewed again, so here's hoping.
In the meantime, I will carry on helping my wife wherever she needs me. Whether it's getting some shopping through to making the tea; if it helps her to cope with life then I will do whatever is required. We have an incredible bond between us which is definitely being tested right now, and at times I can abundantly see why some couples split up due to the pressure. For me, even though I'm struggling, it's still nothing in comparison to what she is going through. My wife is a superstar, she's my soulmate, my rock, my best friend.
And I love her with all my heart.
