Post 22 – Happy Anniversary (No.1 & No.2)

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

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

Happy Birthday Little Stem Cells

Today is a good day….it is my Stem Cell Birthday. Two years ago today, I was sat in the Royal Marsden Hospital in Sutton receiving my stem cells back after a massive dose of chemotherapy that would have rendered me useless had I not been given back my lifesaving stem cells.

I can’t really believe that it was two years ago….although that said, in some ways it feels like far longer than that as so

A shocking photo of me on ‘release’ from hospital post-transplant – August 2011

much has had happened in that time. But two years ago, my life went through a change that I find hard to even explain….I’m not sure how to put into words what happened back then and how it felt and how it affected every little bit of my being. It was a strange period…I had thought about rehashing it all here now, but then I wondered why I was doing that….after all, it is the past. And I’m not one to live in the past…..it’s not healthy and it’s not good for keeping up morale!

But safe to say, post transplant, it was a 6 month period that challenged Nick and I massively. We had to learn to work together to get through a period that made us look at our life and make sure that we knew what we wanted moving forwards. Strangely, in the short term that was easy. It was all about us….the family….being selfish. We looked after the four of us and made sure that WE were our priority. I think that we did that well. And even now, when life is so different to how it was two years ago, our life is different to how it was pre-myeloma. Despite being massively busy with jobs and commitments outside of the family, the family is still key to us. I know to some people that is always the case, but I think that there was a time before my diagnosis that whilst my family meant everything to me, I would allow what other people needed, to take over. That is no longer the case and I hope I won’t allow us to drift back to that (and when I say ‘us’, I really mean ‘me’!

I am lucky. I am so lucky. I know of so many people who had their transplants after me but who have since relapsed. Sadly, there are even a couple who are no longer around today. These sorts of ‘anniversaries’ for me are always tinged with an element of sadness as you remember the friends that had supported you throughout, but who are no longer here. However, those that I am thinking of, I genuinely know wouldn’t want me to be sat here mourning them, but would want me to be living my life as positively as I can do. So I will try to do that for them (with a bit being for me too of course 😉 )

So today, 2 years post transplant and 4 years post diagnosis, things are looking good. I am back at work, with a new career that I love! (For those of you who have been following me, they were amazing when I explained about how things were too tough and have been so supportive in ensuring that the workload is correct! I am one lucky person working for a charity that truly cares so much for its team). I play netball on a weekly basis. And more than any of this, I truly believe that myeloma no longer dictates my life. It will always be a part of me….there will always be an element of fear when I go for monthly appointments, but it no longer dictates my life. There are days and weeks now where I don’t even think ‘myeloma’! I even had an appointment with a financial advisor yesterday and whilst I had to clarify my situation, I was still talking about working for the next 20 years….we can only hope! It is a far cry from my early diagnosis when I didn’t think that I would ever see my children reach secondary school (only 3 years away now!) and to be honest where I didn’t even know that I would be here today writing this blog.

So I am a happy lady as I write this tonight. And I hope that I have many more anniversaries to regroup and remember how far we have come since that diagnosis in 2009.

My gorgeous family in 2013