Hi Helen
You have certainly gone through a pretty rough time over the last few months. Such sad news the Interferon didn’t work and that your future options are now unfortunately restricted due to your bone marrow being so fragile. I would be absolutely useless even with a small dose of cyclophosphamide, because this drug just causes me so much sickness, but I hope even a small dose of cyclophosphamide will control your light chains a little. Regular infusions of platelets and blood should keep you feeling well and give you some necessary energy to be able to enjoy your trip to Rome with your family.
We have followed each other’s highs and lows on our emotional myeloma journeys for many years, sharing our experiences of coping with the inevitable relapses, the harsh side effects of the treatments especially the endless fatigue, peripheral neuropathy, gastro issues and emotional reactions to the high dose steroids which can make us both feel grumpy, as well as the disappointing necessity to retire early from the jobs which we enjoyed due to ill health from myeloma. I’ve always been inspired and motivated by your caring approach and willingness to share your experiences to help and support me and many others on this forum, which has been much appreciated, provided hope and made what could be an isolated and anxious journey for many a lot easier.
I cannot imagine how you are feeling at the moment. Your head must be all over the place as you try to sort out some palliative care. What a terribly sad time for both you and your family. Nothing really prepares us for the final chapter of our lives with myeloma. I wish you all the strength both you and your family need.
Take care Helen. Sending you much love and hugs.
Jan x
