I have a few fears for the future, aside from the obvious one. I am fully aware that we will lose my wife at some point. There have been times when I thought that time had come and we have got past it, but realistically it will happen.
The first worry I have is how I will tell the children. They are currently 11 and 17, and have lived with this for over 6 years, but when it does happen, I have no idea how I will tell them. I have no concept of how to start that conversation, or how to comfort them. And that isnt because we are not a loving family, but because I have never had any experience of that level of magnitude. We have dealt with alot over the years, and have come through, but even with the major experience advantage I have over many dads, I still dont know how I will manage at that time. I’m not ashamed to admit I have had nervous breakdowns trying to imagine it (usually after a few beers to be fair). I always feel my main role in life is to try and protect my family from things, and this disease has shown that that is not possible. I cant shield them or my wife from this horror.
The next fear is for my wife. I have been there when she has been told she will be put into a coma, and have seen the fear in her eyes behind an oxygen mask. I have seen her lying in that coma, and others way too often. I cant even imagine what goes on in her head, and how she copes after all of this. How can she keep going, and look after us all, when her brain has been effectively rewired by a stroke, and her body literally cut open and changed by surgeons, and cells destroyed by drugs and radiation and nuclear isotopes. After all those horrendous and scary and disabling experiences can a person even get out of bed in the morning? I know they say that after a near death experience people have a renewed vigour, but I’m not going to lie – that would need a hell of alot of vigour to get over. I struggle after a heavy night on the ale.
I also worry for the rest of the family. My mother in law has devoted so much to the care of my wife over the years, and I dont know how she will cope. Other immediate relatives are close and the fabric of our whole family will be ripped apart. Friends also will be lost to us I’m sure – I’m useless at keeping in touch with people.
My final worry is for me. I’m now 47, and have now been a carer for 6 years. I have friends, and a job, and the children to look after and worry about, but I also need companionship. While my wife has been ill, our marriage has evolved and whilst it is still loving, we dont have the sort of relationship other people may have. We dont do date nights – my wife would probably fall asleep early, and she cant eat a wide variety of food, or drink alcohol. She is in pain quite alot, an ongoing back problem adding to the other concerns, and so a physical relationship is out of the question. All this means that in a selfish way I feel I am missing out on a fair amount of living, but also do not know how I will ever get that back in the future. The things loving couples do together are now realistically gone from our marriage. I dont think we will ever have them back in our lives, and I also dont know if I will ever find that again in the future. The disease has robbed me of most of my life, and left the identity of the man with the sick wife, the family always seen with concern, the first question always how is she?
Starting out in life, as a young couple you have hopes and dreams, and build a life together to try and achieve that. Cancer has come along into our lives, and taken that away from us, and despite amazing medical science extending the time we have together, there is always the knowledge in our minds that it could change at any second – a cough may be something more nefarious, a routine scan could show a spread of disease, and in seconds things could change again. This is my final fear, that just when things feel they are going well, we find out that no, they are not, and the reality will suddenly drop again, and we will be cast back to hospital rooms, and operations and horrible treatment. There is a feeling of waiting for the inevitable to happen, and it is the anticipation that hurts so much for the rest of us.