Perspective....

I had an appointment with the radiation Oncologist today, Dr Johnson. She didn't know that I already knew the bad news, so I let her know as soon as she walked into the cubical to save her the stress of thinking she had to break it to me.

She drew me a picture of the involved nodes and their location around my lungs and mediastum.
She said they were quite small and not particularly alarming, but never-the-less it indicated to me that my cancer was still alive and well.

She said that she thought she could treat the nodes with more radiation. I declined.
I told her of my plans to travel to Germany for treatment. I think she may have already known because today I got my medical records and I saw a note had been written by someone that I was investigating it. Word spreads fast, I guess one of the people I've spoken to about picking up my stem cells must have put the notation on my file.

Anyway I digress.. I told her that I felt it would be a waste of time as other nodes would just pop up like mushrooms, I needed a systemic treatment.
She said that she had asked Dr Dady my chemotherapy Oncologist if he had any ideas for further chemo. She said he had informed her that only palliative treatment was available for me.
That gave me a fright! I've always associated palliative care with hospices and people with not long to live. Luckily it doesn't always mean that. Phew!

She asked the hypothetical question that if she talked to the Haematology team and they agreed I could have a stem cell transplant in Wellington, would I then not go to Germany?
I replied I would still go, I said I want to be pro-active in treating this disease so at least I would know I'd done all I could.

She said that with my extremely sensitive bone marrow and low stem cell harvest that it was a fairly risky treatment. One that Wgtn had been holding off on until it was absolutely necessary.
They had doubts about how quickly my blood counts would recover, leaving me vulnerable to infection and bleeding. I will discuss it all with the German doctors and see what they say, there are always other options.

She asked if I wanted to stay in the treatment schedule for the radiation just in case, I said yes. It pays to keep your options open and not loose your place in the queue. I'll talk to her again when I get back.

When I got home I found the letterbox bulging from the thick envelope containing my clinical notes. They make for interesting reading! If only patients could get the sort of details from their doctors that the doctors themselves share. Little gems like the fact that Dr Dady was already considering swapping me back onto ABVD in the weeks before I suggested it. No wonder he gave in so easily!

One thing that did catch my eye was the fact that the reason Wgtn had not gone ahead with the Stem cell transplant 18 months ago was two fold, one because of the concerns over low stem cell harvest and severe myelosuppression, but the other was purely political and financial. I didn't met the requirements yet. A transplant would be considered only if my Hodgkin's progressed to systemic disease. Which brings us back to the reasoning behind palliative care.

Dr Johnson said that she wished me well with my overseas treatment, that Germany was the best place to go for Hodgkin's because they lead the world in that field. She asked that I send a postcard to let them all know how I'm doing.