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A long, long wait

Posted by
20 May 2016

So, it's now three months since I've had my stem cell transplant, and almost as long since I have written a blog post. Sorry about that, but there hasn't been too much to say. I've been tired and nauseous as expected, I've had good days and bad days but there wasn't anything which made me reach for the iPad and start typing.

My recovery has gone as well as I could have hoped to be honest. I didn't develop any nasty infections, just a cold and a cough which still lingers. I haven't developed GVHD yet despite reducing my dosage of immunosuppressants and coming off them completely this week, and I have continued to have pretty routine weekly check ups at the outpatient clinic. 

The main thing has been waiting to hear the results of my MRD test. This hasn't gone so well. The samples from my biopsies in February (pre transplant) and April (+28 days) both took too long to get to the lab and weren't viable and therefore couldn't be tested. This has meant an agonisingly long wait, and, oh joy, another repeat bone marrow biopsy. Finally this week we got the news. The MRD result is negative. This means there is no detectable trace of leukaemia at a molecular level and gives me hope that the Cancer won't return. 

This is great news, and everyone around me is whooping and cheering, but I am a bit more cautious. I've been here before. Almost exactly a year ago I was given the same news and within 3 months I had relapsed. I know it's different now. I've had a stem cell transplant and as well as having a negative MRD, I am also 100% donor. That's great right? I should be happy, but there is still that nagging doubt and I'm not sure I will be able to celebrate until I am 1 year, 2 years, or maybe even 5 years clear. 

Tell me, fellow patients, is this normal to feel like this? All my friends and family are celebrating the fact that I have "won my battle with cancer", but I don't think I have yet. I'm not sure I'll ever feel like the battle is over.

Read more about Jane's experiences with AML

Find out more about stem cell transplants


Eleanor Baggley

Jane, this is fantastic news! I completely understand your worries though and you really are not alone in feeling this way. Please don't forget that we're here if you ever need a chat. Best wishes, Eleanor