Monday, 31 August 2015

"You're just adding to the grey!"

The what feels like a saga regarding my scan results continues. I had a PET scan several weeks ago which determines whether I have responded well enough to the treatment to have no more or whether I need more; which could be radiotherapy or high dose chemotherapy or, if it got to this stage, transplants. My scan came back and my consultant said that because he was following the German protocol for my treatment that he would send it to them for a second opinion as it could not be decided whether the nodes in my chest were normal or still cancerous. I went back to the hospital on Thursday and was told that the specialists weren't 100% happy with what the German team had recommended for me, which was radiotherapy, and that my scan had now been sent to UCLH in London for a third opinion. It was explained to me that my results were pushing the limits of what the scan can detect and was much like very high pitched music - some people can hear it and some people can't, meaning some specialists were saying it was still cancerous and some were saying it was normal.
Later that afternoon I visited who could be my radiotherapist who explained to me the risks of having radiotherapy and side effects. He explained how much I'm in the grey area and that if I was an adult in the same situation that I would automatically be having radiotherapy and that Hodgkin lymphoma in a 17 year old is not really any different to a 23 year old. I pointed out that I'm 18 in 7 months, and he simply replied, "You're just adding to the grey!"
I would rather have the radiotherapy than not. That might seem odd, but in my head not only does the risk that the cancer hasn't gone outweighs the risks of having the treatment, but I would much rather be over treated than under treated. It would put my mind at rest, that I had finished the job, to have it. I'm getting more sure each day that the radiotherapy will be happening the more I think about it.
It gives me a lot of comfort to know that my case is being considered to such a depth. People criticise the NHS, and I'm not saying that it doesn't make mistakes, but I am immensely impressed with what is a free service. I have been treated incredibly well.
But nothing is ever straight forward with me! Hopefully I will get the final decision soon.


  1. If science is uncertain, your instincts may be as good as any other way to decide, once you have had all of the best advice you can get. I know I'd feel the same Tash.