On Monday, I had my usual monthly review with my Consultant. I have always thought that these meetings may be too frequent, but the professionals are right, and generally there is something that has occurred since the last meeting, and will need correcting. More medication,and different blood tests.
It is always a good opportunity to catch up with my fellow patients, and staff. Also, if I didn't visit the pharmacy for my drugs, they would wonder what had happened to me! A lot of the staff in my hospital, read my blog, and I am often told, that they learn so much from it. On this visit I was approached by a senior health professional, who wanted to chat.
He mentioned that he personally, was learning a lot from my writing, and felt that the N.H.S in general, was not really taking the benefits of social media seriously. Although he agreed that neither he or his colleagues, used it, or knew much about it. I was explaining how people around the world were interested in reading about the highs and lows of my life with cancer. I explained how my own case, could give people hope. He understood exactly, the benefits of my blog.
My case is very unique, starting with a rare diagnosis, then followed by many ongoing complications. I have had, and continue to have, many surprises along the route, but as he pointed out, the biggest of all is that I am still in remission, after 6 years!
As some of you will know, I have recently lost some friends, just after they had received their stem-cell transplants, and have others that are struggling with their health since, and I mentioned those people. As I always say, the difficulty with cancer and it's treatment is that they are very individual. One person's experience, although useful, is not necessarily a guide, as to how your own process will go.
I was then asked if I was a 'guilty survivor?' It was the first time I had heard that expression, but I do think about things like that frequently. Apparently it is a well know issue, and affects a lot of people. This really set me thinking! Personally I don't consider that I am, but I do often wonder, how I am still here, and others, whose cases seemed more straight forward than mine, are not.
"Why me?" is a question that is often asked, both by people who have been diagnosed with cancer, or people who are surviving, when others don't. I have never asked why I got the disease, but I do often wonder, how I have made it this far, when the odds were stacked against me. However I wouldn't say that I felt guilty about it.
Until, I was told that this is a common issue, I can't really say that I have encountered many people who outwardly feel like that. I suppose it is possible that people don't discuss it. The many people that I am in contact with, all seem very aware of their individual situation, and we all hope that each other do as well as possible. We know what may happen, to any of us, but I would be surprised if anyone suffered from guilt.
This was one of the very few visits to hospital that I have had where a professional has had time to discuss some of the 'grey areas' around my case. These are the issues that can make so much difference, to people holistically. Having said that I had felt guilty for taking up a bit of time! I couldn't help feeling that if professionals managed to find some time to get to know us better it might help us all. Time seems to be our modern day enemy.
Are you, or do you know a 'guilty survivor?'
Despite, the fact that I don't work, my weeks are never boring. My trips to hospital use a lot of my time, and I have calculated that in every month, I spend a complete week at hospital. I have had to become very selective in the projects that I am able to get involved in, so that I allow myself, enough recovery time between treatment. My reality is that I am unable to do the things that my brain remembers I used to manage! It has taken me a long time to come to terms with that.
I watch enviously as my friends fill up their social lives, and plan holidays. Remembering those days, as if they were yesterday. Now, there are times when an evening out can feel like climbing Kilimanjaro. If I get too excited and start filling up my diary, I know that it will inevitably lead to me getting sick again.
My visit to hospital this week provides my thoughts for this post. During my 6 years of treatment, I have to visit the hospital at least monthly for a review of 'progress.' Is everything working as it should? Inevitably it isn't, so I then have to undergo more blood tests to establish what is wrong. This normally results in adding more drugs to my current cocktail. In basic terms, we are a balance of chemicals. If we stay balanced our health is fine, but if something changes we need to adjust it.
The team that look after me are brilliant! To quote my Consultant, " we can control what we can with drugs, but nature will do it's own thing!." Thus far, 'Project Chris' has been successful. I have life, where no one anticipated it. Everyday is a miracle as far as I am concerned. In fact I have just reviewed a new document, written about my disease, factually brilliant, and clearly written, but woke me up to the difficulties I face.One interesting fact I didn't know was that only 500 people per year are diagnosed with Mantle Cell Lymphoma in the UK. I knew I have always been special!
My trips for 'review' provide me with plenty of ammunition for thinking. Not only regarding my own circumstances but those of other 'long termers' in the same clinic. There are a few of us in this 'exclusive club.' We have a very special bond, as we have been through a lot of treatment and shared our personal ups and downs, over the years. We all know the rules, and are aware that anything can happen at any time. We have accepted our situation, and talk openly about treatment and disease.
This week was different however. Still the cheery banter we all share, but this time, I was greeted with the news, that one of our number had relapsed! This is not the first time either, which makes it much more difficult. The treatment options get less, and harsher, and if you can get into remission, that period becomes shorter. She was so matter of fact about it, and was preparing to start treatment soon.
Then I met another friend in the corridor, who I hadn't seen for a long time. I had last seen him, recovering after a recent stem-cell transplant. The first thing he told me was that I looked so well, quickly followed by the fact that his cancer had also returned. He was resigned to the fact that he would have more gruelling treatment, which if he was lucky, may gain him some more time. He is not a young man, and we both looked each other in the eye, with a knowing glance. A seconds silence, followed by, "I have to believe, I have no choice!"
Both these wonderful people have issues very similar to mine. We all understand, possibly more than our doctors do. We are kept alive by the skill and patience of our clinicians, a complicated cocktail of drugs and treatment, and a huge element of luck. At any time, that luck can run out. There are plenty of times when we are able to live our lives without the word Cancer coming to the fore. However, whether we like it or not, the fact is that we will always live in it's shadow.
