The more I think about it the more I consider that at least some of the unwanted activity in the lymph nodes is caused by the graft versus host disease. I am a little worried about the activity in my throat; that’s new in the first and second PET scans. I am hoping that by the time we return they will have lined up an ENT specialist, a dermatologist and a CT scan. Even with all of that lymphoma is so sneaky I don’t think we’ll ever be able to prove I’m well unless I survive for five years.
Kind friends and family are trying to find out how I’m taking all of this and it is difficult to say. When I am busy I am OK but at 3.00 a.m. it’s a little different. I think Dr Potter was a little concerned about how I would cope but so much has happened in the last few years that I have learned to make the best of things but it’s difficult for the family.
This afternoon I have been cooking again and preparing for tomorrow. We are taking a cooked gammon with us and I’m busy clearing out the fridge and using up various items. Ray has some running around to do today and is getting me a new phone. I dropped it in the hospital and it gave up the ghost on texting but the other day I dropped it and it shut down altogether.
Next I must work out all the tablets and creams to take with me. People tend to think that once a transplant has “taken” the rest is plain sailing. Some of the tablets I will have to take for the rest of my life; others are used as anti-rejection drugs in the hope of stabilising the graft versus host disease. It means I am totally dependent on this medication and I miss the more carefree days of the past.
It’s all in a good cause. Tomorrow we are off to France. I hope I shall see Anna before we go; she has a lot of mixed emotions at the moment and I want her to be able to really celebrate her success. It is so difficult for youngsters these days in times of recession to succeed but she certainly deserves it.