I have a rare disease
That should be I ‘had’ a rare disease as I finished my treatment three years ago and I am still clear of the rare cancer called Angiosarcoma that was found on my back.
I am lucky in that my wife, family and friends were here to support me. But I was also used to life in a hospital as I had worked as a biomedical scientist in a London teaching hospital and as part of my job I used to go to the wards and operating theatres. I was used to the language & terminology of medicine.
This background of working in healthcare meant that I was not really anxious about the new situation I found myself in in autumn 2016 when I found out that I had cancer. Yes, I was a bit worried but I was positive that I would be back to doing the things I did before cancer as soon as I could.
I can understand how people get very emotional about getting a diagnosis of cancer and going into this rather alien environment that is a hospital. I spent about ten days on the ward and I used to chat to my fellow patients and some of them were very anxious. It is scary being on your own, away from family & friends, especially if you were in a specialist centre a long way from your own home as we were.
This sense of isolation that someone with a rare disease feels is one of the important lessons I learnt from my experience. Even on the ward of this specialist hospital we were all in different situations and different stages of our life with disease. Some had been in and out of hospital over several years with complications. All of us had had life changing experiences. (I almost forgot that I was in the same situation as them and typed ‘them’ instead of ‘us’!).
I found myself observing the activity within the ward, watching the interaction of staff & patients. I had spent some time working in change management in the NHS & in quality improvement. Here was my opportunity to experience it first-hand. It was an interesting experience being a patient and then as I recovered, an observer.
The thing that made the biggest impression on me was the need for good communications about what was going to happen to us and also the need for emotional & psychological support for both patients & relatives’/carers while we are in hospital & on our return to our home.
It is a shock being told you have cancer. It is a shock going into hospital. It is a shock going home. When you have a rare disease, it is an even bigger shock as there isn’t any local knowledge about your condition. Clinicians may only see one example in their working lives and that is you! You probably know more about it than they do.
By the way I discovered that a friend of 45 years also had the same cancer as I did so perhaps my statement is a bit of a generalisation.
So, these are my thoughts on Rare Disease Day Feb 29th 2020.
Please provide more emotional & psychological support for rare diseases.