We had our routine visit to the Royal Marsden yesterday. In the past it has lifted us, good news from consultants, help from the nurses and an exchange of news with other post transplant patients. It was good to see Bob and Julia. In many ways Bob has more problems than I do, but they are not fatal and gradually I think he will recover. However, we went home in a very gloomy mood.
As Dr P is on holiday we saw the specialist registrar with whom we have had several appointments when I first left hospital after the transplant. She was not her usual cheerful self. She was gentle, serious and obviously ill at ease. There was no news about my biopsy and she said it normally took 10 days to 3 weeks. We find this difficult to understand in that my last PET scan was on 6th September. When I was first diagnosed with lymphoma in 2007 from my first visit to my GP (and there were several) to actually being in hospital having my first chemotherapy session, was 7 weeks.
I asked if the lymphoma had returned what options there were, if any. She became very evasive and said if the disease returns after a transplant then it is very serious. She could offer no valid ideas as more chemotherapy will hardly make a difference considering I had high dose chemotherapy before my transplant. She also said that I might be taken off the immuno-suppressant drugs. However even if the graft were allowed more freedom to be active, I can’t see it defeating mantle cell lymphoma at this stage, if that is what it is. Furthermore, I dread the thought of returning to graft versus host disease at its worst. Of course, this is all speculative but she obviously suspects the worst.
She suggested it would be better if I were not told the results by telephone and that I should have an appointment in clinic to see Dr P in two weeks. So there you have it – two weeks of yet more stress and waiting - in limbo once more. Raymond did some more log chopping this morning and I continue to sort out items for the charity shop and other items for refuse. On one hand we need to talk about our worries, but on the other, we are still awaiting the official results.
My skin has improved quite a lot since the immuno-suppressant drugs were increased although it is still quite itchy (also one of the symptoms of lymphoma). My neck is still enlarged and I am reluctant to go away for a few days in case my throat constricts. It is quite difficult talking to people about what is going on as mostly they expect me to be making progress and they find it disappointing that I am still stuck in limbo. I almost end up with the feeling that they think I am not trying hard enough.