Tag Archives: broken bone

New opportunities

I thought I’d write a brief update as I have been back to the fracture clinic this week….and am pleased to say that I have been told that my foot is finally healing well and whilst not 100%, it doesn’t require me to stay in a boot!

It’s brilliant news although I had already started doing small walks etc without the boot on as my foot felt so much better. I can still feel it a bit and I can’t say I’m ready to go running or anything like that yet, but it is nice to feel that things are progressing in the right direction. The consultant was very clear, physio won’t help it particularly, and I shouldn’t play netball or racquetball for another 10-12 weeks.

I can’t say I’m pleased about the second part of the outcome, but nonetheless, I do realise that it isn’t just me that it impacts when I have these breaks. Nick ends up having to do so much more, both around the house, and in terms of driving and ferrying the kids around. And then there are all the family and friends that I also end up having to ask to help pick up the pieces. So, I have promised that I won’t go back to sport too quickly and that I will make sure I take it easy when I do. And here, in writing, I promise, that if I break that same bone again playing sport, that I will stop the netball and racquetball altogether 😦 .

That said, I do need my sport. It makes me feel so much more positive and so much better about myself. But if I have another break, I’ll have to find another way of challenging myself without doing high impact sport. It won’t be yoga, pilates or swimming, but perhaps tennis is slightly less ‘bouncy’!

In terms of my myeloma, it continues on a gentle path. Since just before we moved to the Midlands, my figures have been ever so slowly rising. And I mean REALLY REALLY slowly, so no need to panic anyone! I’m certainly not. It is so slow that I would imagine that I’ll have well over a year before I even have to consider restarting treatment….and if the numbers stop going up, much longer! I was talking to Nick the other day and all it means is it gives me a focus on not procrastinating with things that I want to do. I’m going to think of it as a timeline to work against and if that timeline extends, even better!

So, I’ve started trying to find a venue for my next fundraising event which will be some sort of large cheese and wine dinner. I’m hoping that we might get the venue where Nick and I got married, but we’ll have to see….I’ll need to work some magic with pricings to make it effective! I’ll be looking out for sponsors and some auction prizes too so if you have connections, maybe you can start thinking…..it won’t be as big as the Glitz and Glamour Ball, and the auction certainly won’t be so big, but I really want to raise this extra £10,000 and reach £100,000 before any relapse gets hold of me!

Over and out for now….got some bits to get sorted for #myelomaawarenessweek in June!

 

Leave a comment

Filed under general, illness, Myeloma, Uncategorized

My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have 🙂

3 Comments

Filed under general, illness, Myeloma