Tag Archives: bone pain

#Myeloma Awareness Week

Myeloma Awareness Week has begun for 2015…and this year I’ve been able to take a slightly more active part in it given that I’m not actually fundraising at the moment.

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Raising awareness of Myeloma is really important because if people know what it is, and what the symptoms of it are, they won’t ignore them…. and that could save or at the very least, prolong, their life. Sounds dramatic? It is in reality. Most people reading this because you are friends of mine already know what myeloma is….it is a cancer of the bone marrow. But I know for a fact that most of you didn’t know what myeloma was before I was diagnosed. And most of you quite possibly still don’t know what sort of symptoms to look out for, or what to do if you do experience them…so here we go.

The hard thing about myeloma is that the symptoms are often confused with every day symptoms….back ache that you might have got from a sporting injury, tiredness that could be overdoing it at work or play or from too much socialising, illnesses that are just because you’re a bit run down. And for those older readers, many of those symptoms are just thought to be because as you get a bit older, things start going wrong.

But the reality is that if you’re worried about these symptoms, and they’re lasting a while, it really doesn’t take much to get them checked out. You can go to your GP and tell them you’re worried. And don’t let them fob you off. Ask them to do a simple blood test (and no, it isn’t expensive!) to put your mind at rest! It is really unlikely you’ll have myeloma…less than 5,000 people get diagnosed every year…BUT, at least this way, you know you’ve checked it out.

I still believe that part of the reason I am doing so well is because my diagnosis came really early…well before I had any symptoms even! And that meant that the minute they thought the myeloma was beginning to progress, they zapped me with high dose chemo and a stem cell transplant. And now my life is pretty much back to normal …amazing! I’m now watched every month and am still on maintenance therapy, but when my myeloma starts to show signs of coming back (because sadly it will one day!), they will be able to jump on it fast again.

And by doing that, hopefully I won’t suffer with bone damage for a long time yet….I won’t see my vertabrae collapsing like some of my friends, and my kidneys will stay healthy for that bit longer. Early diagnosis will have meant that I get to see my kids get to secondary school, and hopefully Uni too! Who knows, maybe I’ll see them get married too! That would be cool…to say the least!

As part of #MyelomaAwarenessWeek, I have produced two things…one for Myeloma UK (click here), and one for YouTube (see below). Please feel free to share these to spread the word on what Myeloma is….and maybe even to raise a few pennies for Myeloma UK.

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Post 20: Paranoid City

Anyone who has myeloma probably understands exactly where I am coming from with this title. In fact, probably anyone who has suffered from a serious illness or cancer understands.

As I say so often, my myeloma, touch wood, doesn’t seem to be aggressive. I am very lucky. I know that I am likely to get lots of warning before I fully relapse. A bit of time to get my head around it. But that said, I have still spent the last week feeling nervous. I have been living in paranoid city.

A week or so back, I mentioned on my Facebook page to friends and family that I was exhausted. My bloods had all come back fine from my hospital visit a matter of days beforehand, but I had spent a week or so feeling like I was exhausted as soon as I got up in the morning, and exhausted as soon as I allowed myself to feel it in the evening too….I quite easily could have gone back to bed…in fact I did one day! The rational person in me said that I hadn’t had enough early nights, that I am running round like a headless chicken trying to do these challenges whilst now also doing all the cleaning and ironing in the house (since I gave up work), taking on extra things at school, etc etc. The irrational person in me knew I hadn’t felt like this since I was fresh out of my Stem Cell Transplant, knew that extreme exhaustion is a key sign of cancer, and had it fresh in my head that I had recently had a conversation with my consultant about the fact there is a small chance that revlimid can cause secondary cancers. With some bowel issues too, and the fact that my mum had bowel cancer a few years back, I was becoming worried to say the least. But saying out loud that everything was fine. Because that’s what you do.

And then on Friday, I suddenly developed a back pain in my lower back. Again, the rational part of me was pretty sure that it was muscular. I think I know what bone pain will feel like when I get it. This didn’t feel like that. I should have been fine. But the irrational part of me was saying that there was no reason that I had this pain, that you can get bone damage with myeloma without having a high paraprotein (even though it is REALLY rare!) and that could this with the tiredness be a sign that I was relapsing…before my 40th Birthday!

Before people worry, I am 99.5% certain that none of this is related to my myeloma, cancer or some serious illness.

But that 0.5% is slightly worrying me in that slightly mental way. And no-one, not even the doctors can stop me from worrying. I can only talk as a myeloma patient, but with bone pain being one of the key symptoms of disease progression, you start to read into every little ache that you develop. When I get a cold, I worry that I am neutropenic and going to get really ill. And when I’m tired, I worry that this awful cancer might be trying to fight back.

So, what I need now is for the back pain and the tiredness to show some improvement. I went to netball tonight. Mad I know. But it was our last match and I wanted to try. The last few days have shown that being active is better than being sat on a sofa. And netball hasn’t made it worse or better. I had really expected that I might have to stop after one quarter, but it didn’t seem to impact the pain at all. Weird. And even now I have finished, it isn’t worse and it isn’t better. I’m not sure if that is good or bad. Something else to worry about perhaps….in that paranoid world that I now live in!!

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40 Challenges – Post 2 What are the symptoms of Myeloma and how is it diagnosed?

My first  post talked about what myeloma was. So I thought I’d talk a little bit about diagnosis and symptoms at the moment. Late diagnosis is one of the main issues for myeloma patients, and it is this late diagnosis that contributes a lot to the less than positive ‘prognosis figures’.

A recently published study published in the Lancet showed that myeloma is the MOST difficult of all cancers to diagnose.  Nearly 40% of myeloma patients were diagnosed via an emergency admission/ referral where the figure is 23% as an average across other cancers. And 10% of all patients die within 60 days of diagnosis. Pretty shocking figures! But I have great faith that what we are seeing is a big improvement. Just two years ago when I held my Glitz and Glamour Ball, we told people that 20% of patients die within 60 days. So things are definitely getting better.

Now the last thing I want to do with this post is to worry anyone who reads this. As I’ve said before I am no doctor and only know what I’ve learnt while I’ve been a patient. And like most things, I only know the little that I know!

Like with most things, most of the time, people’s symptoms aren’t to be worried about. But I have always thought, and especially since having myeloma, that if you are at all worried, you should ALWAYS go to a GP, and you should ALWAYS persist until you are sure that you have been tested appropriately. Whether it is a back ache, a headache or anything that is persistent and concerns you.

One of the reasons that many people don’t get picked up with myeloma is because the symptoms are often confused with day to day issues. The main symptoms linked to myeloma are;

  • Calcium levels being high – can cause vomiting, nausea, constipation, confusion and bone pain
  • Renal Impairment – kidneGP_Pathways_Dec_2010ys can be compromised
  • Anaemia – this leads to tiredness and shortness of breath
  • Bone lesions, fractures or spinal cord compression – this can cause bone pain that doesn’t improve. It is often in the ribs or back, pelvis, shoulder or hips.
  • Ongoing infections
  • Weight loss/ loss of appetite
  • Night sweats

I feel like I have been amazingly lucky. When I was diagnosed, it was via a random blood test. I hadn’t been very well for a few months consistently, and my nurse at my surgery decided that she’d do a blood test despite as well as a swab. Life could have been very different if she hadn’t done that. I wasn’t ill again after that, but eventually got a letter from my GP saying that the hospital had spotted something. I then went through blood tests at the local haematology ward. They came back suggesting there could be an issue and I had further X-rays and a bone marrow biopsy. Now in-between the X-rays and the results of the biopsy they came back saying that they thought it was unlikely to be myeloma – I was showing no damage to my bones at all. Result! We were over the moon…for about 2 weeks until I returned. Unfortunately by bone marrow was showing 10% abnormality. I was officially diagnosed as having smouldering or asymptomatic myeloma – the precursor often to full blown multiple myeloma. It meant that I had myeloma but had no symptoms. No bone pain, my kidneys were fine and I wasn’t anaemic enough and didn’t have a calcium level that was dangerously high. But I did have a form of myeloma. From then, it was a waiting game….it was how long it would be until I needed treatment. At that stage, it could have been weeks, months, years or decades. For me, it turned out to be about 9 months. The rest is history. 

All sounds pretty grim doesn’t it. The problem is, that these sound like you’d know that something is wrong. But often, when people have back pain, they think that it is because of a sports injury, or often because myeloma normally affects older people, they think it is just older age. And there comes the reason that it doesn’t get picked up by GP’s. People either don’t go early enough because they think they’re making a fuss about nothing, or they go and the GP doesn’t take their issues seriously. But, if you genuinely think that you have a pain that is ongoing, PLEASE go and make sure you see your GP. And ask them for a blood test. They aren’t expensive, and they can often just put your mind at rest that it isn’t something more serious. Because most of the time, it won’t be!

Part of the reason that I have been so open about my condition, and why I fundraise so much, is because I honestly believe that awareness is a massive part of changing how badly myeloma affects patients. If people know what myeloma is (and I didn’t until my diagnosis!), and know what the symptoms are, then they might get diagnosed earlier. And if they get diagnosed earlier, they can get treated earlier and hopefully avoid the more serious complications that can come with myeloma.

Anyway, that’s the serious bit over! Now onto the fundraising!

So in my last post, I mentioned that Challenge 2 should be easy….climbing 40 floors in a building. Sadly it doesn’t look like my plans are going to come off. So if anyone else know’s a way for me to climb 40 floors of a building, please let me know. I had really wanted it to be the place where I had worked, but it sounds like there are too many hurdles in the way for this.

Anyway, what is Challenge 3. Well it is that I will be giving up alcohol, crips and nuts for lent. Sort of. I can’t quite do it for lent as we are lucky that Nick has won a trip to Mauritius with his work. Call it a lack of commitment, but I decided that we should be able to enjoy this trip of a lifetime and so I have been giving up those things since the 3rd February!

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I’m now 20 days into the challenge with another 26 to go. Now anyone who knows me well, knows I like a tipple or two and so this really is a massive challenge for me. Although funnily, I think that I have actually missed crisps and nuts as much as they have always been my snack when I’m bored etc. So if anyone fancies sponsoring me for this challenge (and there will be more, like a sponsored silence, sponsored 40 hours awake, sponsored 40 hours in bed, and a 40 pub, pub-crawl!), then please go to my just giving page at http://www.justgiving.com/Deb-Gascoyne.

In general though, all is good at the moment. I have my next hospital appointment on Tuesday and hope that the results will continue to be pretty stable. The last two paraprotein results have been 3 rather than 2, but that is all fine so long as they don’t go up. I’ve not been too well this week…yet another cough and cold….but that’s probably because it’s half term and I’m off work! Seems to be par for the course!

It’s got me down a little bit as I have started running recently. This is all towards one of my challenges. I’d found myself getting stronger with the running even after just a week or two. But being ill has meant that I’ve had to stop running. I’ve found this really hard, but knowing how my immune system is low, I can’t risk running in the rain that we’ve been having. I’ve been running with a group of friends who are mainly beginners too, and most runs have started at mine, or my next door neighbours house. So it’s been really tough watching them all go off….and watching them get better. They’re now up to nearly 5 miles where I could only do 3 at a push when I stopped…probably less now. I’m not often jealous, but I have to admit I have been a little this last week or so. There are times when myeloma really gets in the way and those are the time I really feel like it sucks!

Anyway, I need to write my next post a bit more promptly or I’ll never get 40 done before January! But I’m off for now.

And as always, up for anyone to comment if I’ve got anything wrong here! Or if there’s anything in particular you’d like me to have a stab at writing about re myeloma!

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