Tag Archives: relapse

Happy 5th Anniversary

Every year I write this post…..and I make no apologies. This is an amazing day for me to remember as it is the 5 year anniversary of when I had my Stem Cell Transplant…the point at which my myeloma was put into remission, and, thank god, has pretty much stayed there ever since.

This year, it has felt even more emotional and even more special, as this week, our oldest is leaving primary school and will be off to ‘Big School’ in September. I am so excited for her and all that it will bring. We have a raft of special events lined up for her in the run up to her leaving her primary school and it included her ‘Leavers Performance’ last week. Now Rebecca and Sam only joined the school last September due to us relocating up to the Midlands. So when she told me there was a song in it that would make the parents cry, I warned her that I wouldn’t be ‘that parent’ as she hadn’t been there long enough for me to feel emotional about it. Her friendships, whilst really good, aren’t the ones she has had for 7 years and basically it just wasn’t going to happen.

Yes, you’ve guessed it….before the song even started, I had tears rolling as I realised that we had made it….we had got her to secondary school and I was here to see it. Not only that but I will see Sam go next year. And I also strongly believe now that I will get to wave them both off to University in 7 years times.

It has been a rollercoaster of a 7 years. Some of it has been incredibly difficult for all four of us but I am so proud of how the children, Nick, and I, have coped. We have got through my diagnosis, survived my treatment programme, and dealt with the awful reality of saying goodbye to many ‘myeloma’ friends who have not had the luck of the draw that I have had. Even now, as we watch my figures, month after month, we manage to keep living our life fairly normally, and I hope most of our family and friends would agree, fairly positively.

As we go into this next year, Nick is looking at a new role with new responsibilities, we have just had an offer accepted on a run down house in our local area, and Rebecca starts her new adventure…. who knows what I’ll be writing about this time next year!

 

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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

40th-birthday

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

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Post 4 – Blah de blah de blah!

Ok well I’m not writing enough of these posts at the moment….I think it’s partly because I’m not 100% sure what to write about all of the time. I wanted to write about more serious aspects of myeloma but that is quite hard to do when I’m currently in remission. I’ve found that because of that, I subconsciously remove myself from the nitty gritty of what myeloma is and the side effects and things. So it makes it harder to write about it! It is also hard to write about it when I know so many people who are going through treatment….I would hate to upset anyone by making assumptions about treatment/ feelings etc and I know myself that when you are removed slightly, it is harder to be as realistic about it. So I need some ideas…if you have questions about myeloma, perhaps you can ask them and I can focus on those? Or if you’d rather I just posted about random things and my challenges, then that would be good to know too!

I had my last appointment a couple of weeks ago and am relieved to report that everything is still stable. I have to say that I let out a sigh of relief. It sounds silly, but I had seen a tiny tiny blip for a couple of weeks and was worried it was the start of my paraprotein (see post 1) going up and me beginning to relapse. But I’m back down to my normal level and all is good again! Yay! The one thing I would say about myeloma is that once you are diagnosed with it, you are always living with an uncertainty. And whilst it is easy to be positive a lot of the time (if you are lucky enough like me to be in remission), you always have moments of doubt and there is always a slight reality in the back of your mind, that you could relapse at any stage. So as much as I spend most of my time being very optimistic about the future, it only takes something small to make me worry sometimes. But for now I can breathe easy and keep on with my Challenges!

So what is Challenge No.5? To run 40km over 4 days. 

I must be absolutely barking mad. For those of you who don’t know me very well, I absolutely HATE running. But I am very jealous of those people who love it, who can do it for free, can work it around their families, and probably mainly, who are able to control their weight by doing it regularly. And this is why I decided to put something fairly significant down for my 40 Challenges B440. 

A few people have suggested me getting lots of people to do the 40km with me so that it wasn’t too much for me to take on along with the other challenges. But the whole idea for me was to make sure I’d given myself every chance of falling in love with running and the only way I’ll do that is if I’ve tried doing it really hard. 

So when I first started, I couldn’t even do 2km without stopping a bit…and I was running at 7.5mins per km……pretty slow for any established runner I know! But now, whilst I still haven’t got to the point of loving running, I am up to running 5km (on the flat) without too many problems….and today, I managed to do an average of 5.5mins per km….my fastest ever 🙂 I definitely need to stop worrying about speed and start building on distance if I’m going to reach my target, but it is nice when you suddenly break a personal record!

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I’ve been really lucky that a group of my friends have all started running at the same time as me…they’ve called the group the ‘Jigglers’ – will leave that to your imagination! Whilst we don’t always run together, the fact that we all map our runs online, means that we support each other and keep each other going. The psychological support is fantastic for me and without it I think I would already have stopped. But instead, even when I was ill, I started back running asap and at the moment, despite being in Manchester with work, I have been for a 4.5km run! 

So overall I’m feeling really proud of myself. And what with only having another 9 days to stay off the alcohol, nuts and crisps, I’m close to ticking off another challenge…which is a good thing really as I’m not quite ticking them off quickly enough at the moment! 

If you fancy checking out my challenges, click on the tab at the top of this page – 40 Challenges B4 40 where you can find out what they are and how to donate if you fancy supporting me financially (You can’t blame me for trying!) www.justgiving.com/Deb-Gascoyne

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