Well, this week has been a really crazy one! Since winning the award last week, much back slapping has been done, and it has slightly taken my focus from my regular work. I have found it difficult to keep up with people wanting to communicate with me, and concentrate on my cancer work. However, now a lot of the early excitement has calmed down, life is beginning to get back to normal, and I can focus once again, on what is really important.
Since the increase in publicity for my work, I have been contacted by people around the world, and excitingly, from people in Bangladesh, and Africa, where the financial issues of cancer care, are a major problem. In all instances, they were talking about the lack of support for people affected by cancer. They clearly understood that care depended on their financial ability to pay for it, but beyond treatment there was nothing available, to help either patients or relatives.
Shock, fear, anger, and sadness are just some of the emotions that people experience, but the most common, is isolation. These can occur of course wherever you are in the world, but there are two main obstacles in improving this situation. One is that many people do not accept that they have these problems, and the second one is exactly how do we deal with them? In many cases these issues can leave a legacy, long after the cancer has gone.
Cancer can be seen and assessed, and treatment progress can be quantified, however the emotional side of things falls into the vast ‘grey area,’ that becomes cancer support. Our physical treatment, has been tried and tested, and the success statistics are there to be seen. But away from the hospital, the story is completely different. We are all affected differently, by a cancer diagnosis, and it is not only the patients, but family friends etc. It is what I call the ‘ripple effect.’ We will all require different support. Some, a lighter touch than others.
Since my own diagnosis, I have been unable to sleep, without very strong medication. According to the experts it is because my brain saw my situation as a major trauma, and now stays switched on to try and protect me. I have also been unable to accept that this is actually happening to me, which I am told happens to people trying to cope with loss. It was explained, that psychologically I am grieving for my old life and everything I have lost.
Both of the above explanations make sense but nothing changes the fact that they are happening, and I can’t control things. One of the difficulties I find, is that when people see me, they always say how well I look. Of course, unless I am having some severe treatment, my body will rarely show what is going on emotionally. But it doesn’t mean that all is well. How can I expect others to understand what is happening if I don’t myself?
Personally, I am not really one to ask for help, as my wife will testify, but even if I was, where would I go? The very reason that I started this blog, and have a presence on social media is that I was unable to find any suitable help, and still am. Day after day, week after week, I am contacted by people who read my story, and want to talk about their own. Most, like me are very independent, and may see asking for help as a weakness. But I am still truly shocked that in this day and age, we have such little support available for people, during their life with ‘survivorship.’
I don’t see this as a purely economic issue either. My opinion is that because generally we are becoming better at treating the cancer, we have quickly got a generation who are living with many unforeseen side effects of treatment. We have become victims of our own success in many ways, but we have also created another problem. The issues around, work, finances, relationships and general reintegration into society have not really been thought about, as our drive for improving cancer treatment increases. It is only now, that we are beginning to understand some of these and how they impact on our well being.
Treating cancer, is no longer about just what goes on in hospital. For a lot of people the impact of cancer spreads across their life, through their family, friends, work and social life. This may cause them to lose their jobs or the partners, maybe both. My experience is showing me that this situation is seriously underestimated, even by health professionals. The official figures state that one in three of us will be directly affected by cancer in our lifetime. I believe that all of us are already affected by cancer, because I’m sure that we all know someone close who has been diagnosed, thus it will affect us too.
How do you deal with the emotional issues of cancer? What services would you find/have found beneficial for you? Do you feel we understand the issues enough?