Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room in Wycombe Hospital with him telling me that unfortunately the Bone Marrow Biopsy that he had been so sure would come back clear, had nearly 10% myeloma in it. It was all a bit of a blur really. I had ‘Smouldering’ or ‘Asymptomatic myeloma’
We came home with this diagnosis being told that it could stay like that for years. Smouldering myeloma (how sexy does that sound for a cancer!) meant that I had no real symptoms. No bone damage, no sever anaemia (just minor), low calcium levels and no kidney damage. We were still pretty shocked at that time. I told friends and family but kept hoping that I was being my usual ‘drama queen’ self and that it wouldn’t come to anything and that I would be watched for many years. Everyone kept telling me that I could be fine for many years without treatment.
The first few months were really scary. I read too much online. Figures saying that I only had 2-5 years to live. Stories of how myeloma negatively affected people’s lives. Nick would regularly walk in the room in the early days with me sobbing over the laptop as I read about what my life might possibly look like, or heard about another myeloma patient who had passed away. And then I started fundraising. It gave me a bit of a focus with it all and I truly believe that it helps me to stay positive about what I am now living with.
As I did all of this my paraprotein levels (the blood measurement they use to look at disease progression) kept rising slowly. But I still had no real symptoms. And then they started to get concerned at how high these levels were rising, at the fact I was becoming more anaemic and that I had some pain in my back that they were concerned could be the start of bone pain. I transferred to the Marsden in Surrey to ensure I got the best care, and in November 2011, my treatment started. 6 months of various chemotherapy to try to reduce my paraprotein levels so that I could have a Stem Cell Transplant (SCT).
Tomorrow is Anniversary No.2….3 years since I had my SCT. And with that I feel amazingly lucky. So many people that I know haven’t had 3 years of remission. With it comes the knowledge that when I relapse at some stage, that another transplant is possible, and that with that comes potentially half the length of time again that I get from this current remission. That is assuming that they haven’t moved away from the use of transplants (and that IS likely to happen at some stage.
A Stem Cell Transplant is REALLY invasive. I felt like I’d been run over by a bus. It was probably the worst thing I have ever been through in my life and ideally I will never have to go through it again. But I know I quite probably will. It is a really lonely experience. You are just so ill that you (well I at any rate) don’t want to see anyone for 3 weeks. Even the visits from Nick were hard as I was too tired to talk to him or do anything. I didn’t even get out of my room for about two weeks. But it did the job for me….it has given me another 3 years of a relatively healthy lifestyle. I think I do more than lots of people who are healthy…something I couldn’t contemplate when I walked out of hospital nearly 3 years ago.
Being diagnosed with cancer is bizarre. It seems surreal and like it can’t really be happening to you. And like someone must have got it wrong. I still sometimes find the whole thing very surreal. Whilst once in a blue moon, I worry about dying early etc, I’m don’t think I really believe that it will happen. Fingers crossed the research will continue to progress so that this ‘head in the clouds’ mentality is a truth! I’m back now to the stage I was when I was smouldering. Believing that things will stay good. And that is great.
I will spend today reflecting a little on the past 5 years and how far I have come on my journey with myeloma. And I will also be remembering my lovely friends, and their families, who have not been as lucky as me. Pamela, Amanda, Sharon, Penny, Isabelle, Sean, Bridget and Paul….just a few names of people who were my online and ‘in person’ friends. It really brings a lump into my throat.
And I will also be grateful to all of you who have supported Nick, me and the family through everything. We are so lucky to have you all. xxxx
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