After my unscheduled visit to haematology,and extra bloods being taken, it appears that paraprotein levels are on their way up (almost doubled in last 9 months)
Ecg this morning, marrow biopsy scheduled for next Wednesday, ct scan 10 days later and review of everything all scheduled for 4 weeks today.
And somehow I need to try and keep working and also enjoy holiday between bone marrow and ct while constantly short of breath and pain in chest (assumption being spleen after initial ecg feedback). Wanted to walk around the Dumfries & Galloway hills with dingbat doggy.
Not going to lie, bit scared after a constant flow of "many people never get any worse and stay on w&w for years" but wondering if I'm in the smaller group.
Am I over reacting?
Anyone else gone from "don't worry too much" to "we need to get all these tests done as quickly as possible"
Hi Toby B and sorry to hear this…… you are not in a small group…… this happens a lot.
My circumstances were slightly different in that I had been sauntering along on Active Monitoring for 14 years (although I did have regular skin treatments) then in August/September 2014 things kicked of due to another rare type of T-Cell NHL showing its face….. this actually was the first time I meet a Haematologist (although I had a very short diversion to Oncology in August) as my first 14 years I was under Dermatology….. I Haematologist was to the point…… “the plan we are putting in place needs to work as we have no other tools in the box”……. But I heard those words in Dec 2013 and here I am 13+ years on and I am still living a great life.
There are many people who will have regretted taking Stoicism as their course of action……. not as disastrous with Lymphoma but with other cancer and indeed other health conditions they may have not lived to get to regret it.
