The reality of living in a permanent shadow

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.

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