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!

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

40 Challenges – Post 1 (but with a bit of substance?)

Ok so I thought that I’d take a different approach to this post given that I’ve got to write more than two a fortnight for the next year! My health seems to be doing ok at the moment with me remaining in remission. My hormones have settled a little with the help of HRT and, dare I say it, antidepressants. So life has, instead, been taken over by my 40 Challenges B4 40. But I doubt that you all want an ongoing conversation about that and nothing else. My plan therefore, is to try to put some substance into my blog. Although I also plan to list a challenge a week…who knows, it might spur someone into being able to help me!

So to get the Challenge side completed, I thought I’d start with Challenge No 2 (even I have to admit that Challenge No 1 isn’t likely to go ahead sadly 😦 ) but No.2 is one that I hope will be relatively straight forward to plan….’Climb 40 Floors in a Building’. Now I used to work at HSBC in Canary Wharf, so I’m hoping that I can find a friend from there to sort that one out! However, if anyone else has any fantastic ideas, please let me know!

So in terms of some sort of substance, I thought I’d try to give a bit of an overview of various aspects of Multiple Myeloma.. Before I start though, I should clarify that I am no medical expert. In fact, I tend to find that information about myeloma often goes in one ear and out the other….and I have a vested interest in it! I can only speak from my own experience, and if there is one thing that I have learnt about myeloma and how it impacts people, it is that it is totally individual. No-one seems to have the same symptoms, the same treatments, or be measured using the same indicators. It often baffles me, so I would imagine that it baffles those around me too!

What is Multiple Myeloma? 

Well, myeloma is a cancer of the plasma cells, i.e a type of blood cancer. Basically these cells are meant to produce antibodies to fight infection, but with myeloma they mutate and rather than producing antibodies they produce a useless antibody called a paraprotein. Lots of you may hear me talking about what my paraprotein levels are, and this might help to explain why. The more than I have, the more likely it is that the myeloma is getting stronger in my body – this gives my consultant the ability to then give me a more accurate bone marrow biopsy and x-rays if she thinks that my levels get too high. Obviously they don’t want to be doing biopsies and x-rays unless they have good reason.

The reason it is called Multiple Myeloma is because of it being a cancer of the blood. This means that it can do damage at many sites around the body – basically it tends to affect places where the bone marrow is active like the bones of the spine, skull, pelvis and the rib cage. The more of these abnormal cells a myeloma patient has, the more likely they are to experience damage as the myeloma moves into the bone and makes it weaker or causes lesions. In addition, the breakdown of bone, can increase the calcium levels in the blood and this can cause problems for the kidneys which stop being able to filter the blood properly. For those who are hit hard, it really can be a very painful and difficult cancer. For me, I was lucky as I was diagnosed early and before I saw many symptoms. To date, I haven’t really had any bone or kidney problems – I know that I have my GP surgery to thank for this!

Myeloma currently isn’t curable. It can be treated when it is symptomatic and for those of us who are lucky like me, this puts us into a remission.Mine has currently been 2.5 years and there are people (albeit a very few) who get over 10 years of remission. These figures seem to be getting greater thanks to the great work that researchers, consultants, and charities like Myeloma UK are undertaking. I finally feel positive about my myeloma and I think I’ll probably write a post about that down the line! Hopefully I won’t relapse before I get round to it!

It would be interesting to know if people have things they don’t understand that they would like to know more about. I’ll try to keep my posts brief…if they aren’t interesting at all, let me know and I can stop too! And if I get anything wrong, please, please make a comment at the bottom so that people can get the right information! Thanks!

Real or No Real?

That is the question. And god is my mind in a mess today.

Yesterday was my monthly appointment. I drove down to the Marsden in good spirits having had another good month of feeling 100%. Work is going well, netball is fantastic (I’ve just invested in a new kit!), and I’d been really healthy. The summer holidays are here and we’re off to Morocco in a couple of weeks. 

So I went into hospital, with my only worry being that I might be a little more neutropenic than I was last month and whether that might impact on my travel insurance cost! But the doctor happily told me that actually my levels had gone up to 1.45 and looked better….fantabulous…all was looking good for going on holidays and having a good time. He went on to say that all my other normal bloods (blood readings) were looking pretty good too. 

So it was a bit of a shock when he then went on to say that my paraprotein had moved up very slightly. The paraprotein for those of you that don’t know, is, for most myeloma patients, the best way of measuring how someone’s myeloma is progressing. To give you an idea, mine was at 34 when I was first diagnosed and it was the reason they were worried I might have myeloma. It then rose and was about 50 by the time I had my transplant. But many people have symptoms when their levels are much lower, and second time round, it is watched much more carefully, and generally treated much sooner.

After my transplant my paraprotein level had reduced to 2 which was fantastic….and about 2 months ago, it even dropped to 1! I was talking about whether one day perhaps I’d hit zero with the aid of revlimid, and count as having reached ‘complete remission’. But last time, it had gone up to 2, and this time it had gone up to 3. Now these figures really are very small….they may even be a blip. There is nothing to say that this is major….apart from the fact that it HAS gone up. Even if it is only by 1. And that my doctor that I saw, raised it as a slight concern. He admits it may be a blip…but he also made it very clear that they will now be watching carefully and that if it continues to rise, that they will want another Bone Marrow Biopsy and set of xrays to see whether there is anything going on in those damn bones of mine. To the extent that he wants me to call in this week to see how my readings are as if they HAVE gone up, he wants me in earlier than I would have otherwise gone in.

So, what does that actually mean….haha…wanted to swear quite loudly there, but can’t use the language I want to given that my mum reads this! It doesn’t really mean much at the moment. And in the rational part of my mind, I know that until I phone for my results on Friday, I should just potter on with my life, think positively and not worry. I’ve spent the last two years becoming more and more positive, and feeling SO good for it.

But realistically…..well, I’m now in panic mode already. I’m already wondering whether I need to rethink about whether I should work; about how long, if I start treatment, that I’ll be able to continue to play netball for; about whether I’ll see Sam get to secondary school; about whether I should start planning my playlist for D-Day! 

I’m already scared….it has reminded me of how it felt when I was living with a big unknown.

And for the first time since I was diagnosed (I think!), I have had the feeling that this is so unfair, why have I relapsed so early, why couldn’t I get the remission that some of my friends have had…..and then the guilt for not being grateful for what I have had.

And then of course, I slip back into slapping my wrist and saying that come Friday, my paraprotein may be back down at 2, and all this worry will have been for absolutely nothing! And that even 3, is a long way off 34! 

Real or no real…..I just have to wait and see….wish it was more like the Radio One game where you got your answer straightaway….