I was first diagnosed with small lymphocytic lymphoma, a slowly developing and incurable type of blood cancer in 2010. I was put on ‘watch and wait’, meaning that my treatment will only start once the cancer and my symptoms have developed to the point that it is needed. More than 5,000 patients are put on watch and wait each year in the UK.
I’d never done a blog before, but I felt that it needed a name that summed up exactly how I feel about my blood cancer. Eventually I decided upon ‘Diary of a ‘Fake’ Cancer Patient’, because in many respects that is what ‘watch and wait’ does for you. I look healthy and largely I feel pretty healthy, except for those fatigue days when I can’t get out of bed. But I also have Stage 3 Cancer, which is treatable but not curable. That can be difficult to understand and even harder to explain.
At present my check-ups are six-monthly, which means that I have to work really hard to keep my inner voice in check. This is the true test of ‘watch and wait’ - living a life with cancer as life after cancer is not a place I will ever get to. Chemotherapy will be used to reduce the symptom burden when it gets too much, but it will never eradicate the disease. As a result I’ve got two choices – to live with cancer or simply to exist ….
I can’t imagine ever “just” having a cold again – on an average day, I get up in the morning, have a shower, check the lumps in my neck, armpit and groin for signs of change, get dressed and go to work. If I have a sore throat and a series of fatigue days in a short space of time, inevitably my thoughts pass to whether this is the start of a decline in my health and to the possibility of starting chemotherapy. You CANNOT live your life like that!
Because my cancer is in my immune system, it is very important that I look after myself. So, daily I take lots of vitamins and eat a very good diet. Ok, I know I drink far too much red wine but there are antioxidants in it - and after all it does form part of my evening relaxation - it works for me anyway. I also have reflexology and practise reiki, make sure that I get plenty of sleep and I have my annual flu jab.
There is a massive difference between practising basic good health and placing myself in a “bubble”. In any event, how are you supposed to avoid bugs and infections, when you are a parent? It is just not fair on your child to stop them being a child, have their friends round, get dirty and charge around - just to protect my compromised immune system. Children of cancer patients have it hard enough without taking away the pleasure and escapism of just being a child. For me, it all boils down to balance …
My regular visits to a psychologist at the cancer psychology unit at my local hospital have become a fundamental part of my coping strategy. These sessions allow me to release a torrent of emotion and what some may describe as irrational fears and to regain my sense of perspective and inner balance.
It wasn’t always like this. About a month after diagnosis, I went to pieces and sat in front of my consultant panicking, crying and generally not coping. My cancer specialist nurse suggested that I may benefit from seeing someone at the new cancer psychology unit. Seven years later, I see my psychologist every six weeks and I feel far more grounded about my cancer.
I have been described as a “swan” by friends and colleagues. They don’t mean elegant and graceful, but rather that it is all going on under the surface. It’s not that I don’t think that I can talk about how I feel, because I know that I can and am incredibly lucky to have such fantastic support, it’s just sometimes I need to talk to someone who is completely objective, who doesn’t know me outside that room and who isn’t going to start worrying if I am not 100% positive all the time.
All of this set me thinking even more and it has occurred to me that if more people are surviving cancer, then more people should have the opportunity to access psychological support.
I should imagine that my situation is not dissimilar to someone who is in remission, yet I am fully aware that psychological help is not routinely offered across all health boards. Recently at my support group, there were those of us under one health board that had access to this level of support whereas the others did not. With the improvements in treatment and cancer survival, this is a situation that is quite simply going to snowball. After all, what is the point if you cannot live your life and take pleasure in every aspect? For me, the thought of just existing is not a place I want to be in.
Bloodwise has new range of information and support for patients affected by issues associated with being on ‘watch and wait’.