Tag Archives: diagnosis

The C Word

I hesitated about using the title above. I have just watched the BBC1 drama about Lisa and her emotional journey with breast cancer. It has inspired me to get back on my blog as my emotions are running high and I feel the need to get some of it written down. 

It was such a sensitively filmed production. Not jut sensitive but in my mind spot on. Whilst Nick and I were lucky enough to have kids before my diagnosis, so much of what her and her husband went through rang true to me. I literally sobbed from start to finish as it brought so much home to me.. From feelings of sadness of what we lost with my diagnosis, to feelings of sadness and guilt of what Nick and my family saw me go through, to feelings of extreme luckiness of the situation that I am in now.

I said that to Nick and I think he thinks I’m barmy! Despite being the eternal optimist in our relationship, I’m not sure Nick would use the term lucky at all. And yet me, the most glass half empty person you’ve ever met, genuinely believes that in comparison to many of my good myeloma friends and supporters, I am amazingly lucky. And with myeloma it seems to come down to luck. Where one person responds to treatment, another doesn’t and loses their options. Yet for me, I am still in remission 4 years on,and rightly or not, I belive that advances are coming that might just make me regret my older relaxed attitude to old age ( you know, that place I was never going to get to!). 

But back to the programme and the tears. It was amazing how it got across the impact on the carers and the family. Unless that was just knowing that Nick had gone through what Lisa’s husband went through. The heartache of seeing someone struggle and being able to do nothing. Being so very helpless. And actually being half invisible to those around too. It was all about me, and whilst yes I was struggling immensely both physically and emotionally, I think that Nick was too but is very strong externally and so looks like everything is fine. And that’s to me too! My family was so caring for him though and I hope that really helped him…to them, he is much a part of our family as I am. 

I am sure there’s so much more I could write on this but it nearly 11.30 and I’m emotionally exhausted having watched that. My thoughts go out to all those I know dealing with this damned disease, whether it’s breast cancer, myeloma or some other form of cancer. It all sucks. Keep strong when you can, don’t worry when you can’t. 

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Post 6 – What Causes Myeloma?

I would lay a bet that this is probably one of the most common questions that is asked when people are diagnosed with myeloma – that along with the “Why me?” question. After the initial shock of a diagnosis, I think it is natural to want to understand exactly what has caused such an upheaval in your life. There is still a massive fear of what is to come, despite the fact that the future is starting to feel a little brighter for myeloma patients (more to come in another post). We are still a few years at least away from the major changes that are being talked about these days….and for some patients with more aggressive myeloma than me (touch wood) that can be a scary prospect.

I can honestly say that I haven’t really ever asked the “Why me?” question….but in the early days, I did wonder whether my actions etc could have caused me to have myeloma. Funny isn’t it that human nature seems to want to be able to pin the blame on something rather than perhaps accept that some things just happen to us. Part of why I have chosen to write this post is because it frustrates the living daylights out of me when people close to me drop into the conversation that maybe, just maybe, I am to blame for my cancer. That if I had led a more puritive lifestyle, not smoked when I was younger, not drunk as much etc, that I might not have myeloma today.That said, they haven’t been brave enough to say that to my face….perhaps they know that there could be serious repercussions. I do hope that if they do ever come out with it directly, I will be able to hold my nerve enough not to let loose, but the day is getting closer that this may happen. They skirt around the issue by talking about cancer in general, but I am pretty clear what they are getting at . Of course, it doesn’t really change anything if my behaviour in the past has caused my myeloma. I still have it. I can’t change that. So what good does it do anyone? I believe it all comes down to some people feeling that is ok to be permanently making judgements on other people’s lives and whether they are behaving in a way that is ‘right’ or ‘wrong’ (although god only knows who is in a position to make that distinction).

 

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To be honest I’ve had enogh of it at the moment. None of us are any better than anyone else. We might not always agree with other people’s behaviour, and we all have the right to have opinions, but sometimes with some people, it feels like they are always judging the people around them – and often when their own life isn’t that perfect either. Some people just can’t help but share their opinion. There are probably many things that go through my head  about the people around me….but the majority of the time, I keep them there because I know that I’m not perfect…and often not right in what I think! For anything I struggle with about others, I know they probably have similar frustrations (hopefully about different issues) with me! Anyway, this post wasn’t going to be quite as personal as this, and I seem to have digressed slightly.

So, what is thought to cause Multiple myeloma? The general view is that it isn’t yet known what causes it. Multiple myeloma is known to start with one abnormal plasma cell in the bone marrow. This then multiplies and because the cancer cells don’t die like normal cells, eventually they take over and crowd out the healthy cells. Researchers are still studying the DNA of plasma cells to try to understand what actually makes a cell into a cancer cell. Nearly everyone with multiple myeloma seem to have genetic abnormalities in their plasma cells that they think contributed to the cancer, whether it is a defect in the chromosomes, extra copies of other chromosomes or missing parts of chromosomes.

Now the question is what causes those abnormalities, and perhaps even more, how to rectify those abnormalities before they cause issues. It is thought that myeloma may be caused by a mixture of genetic and non-genetic (environmental) factors. This may explain a little bit about the fact that they don’t currently say that it is hereditary. If I’m right, my children may be genetically more predisposed to having myeloma, but unless they have a certain trigger, it is unlikely to kick off for them. I think the understanding on this is changing all the time. When I was first diagnosed, they were saying that it wasn’t genetic at all….tough to hear that it might be….my faulty genes could cause a future of difficulty for my family….anyway, digressing again!

One of the key potential ’causes’ seems to be exposure to chemicals, pesticides (people in agriculture) and solvents (petrochemicals), as well as those who work in metal processing and textiles. There is much talk about the fact that many firefighters from 9/11 have suffered from the cancer…far more than would normally be expected to show symptoms. There is also an increased risk for those living near to or working in nuclear power stations. So it is likely that research will continue to focus on finding out more about what can trigger people’s myeloma – by working out how this all happens, hopefully they’ll find more about how to cure it too (a big reason why I continue to fundraise for Myeloma UK)

And just for anyone else who might think that I have brought this cancer on myself…..a study in 2011 in Boston suggested that those people who drank and smoke, had a lower risk of developing myeloma than those who didn’t…..food for thought!

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Finally onto 40 Challenges B440 – Challenge No 6: Do a pub crawl around 40 pubs in 40 hours I decided that the original challenge of having to do a pub crawl around 40 pubs in a day was nearly impossible so I have amended it slightly to allow for a few breakfast pubs the following morning (a big fry up springs to mind!) I’m hoping that once the hangover has moved on, the extra few hours will allow me to visit the additional pubs and make it a slightly more enjoyable task than having to get 40 pubs in 18 hours….3 in an hour….and pretty much impossible if you include travel too!

I still need to work this pub crawl out and am hoping to write to a local brewery and see whether I can get them to help me to organise this….it would be great if we could turn it into a proper fundraiser rather than ‘just’ a pub crawl! If I could get each pub to donate a minimum of £4 to the challenge, we’d make over £120….and for every pub that provides me with a free drink I will commit to donating £1 for a soft drink and £2 for an alcoholic drink – I’d hate anyone to think I was doing this for a free day out! The plan is for the crawl to be around the High Wycombe area as this means that I can get support more easily, and hopefully also means that we can have support at the various different pubs! This will encourage the pubs to buy in to the whole concept as they will hopefully get extra business from it.

So if anyone has any contacts with perhaps Rebellion brewery in Marlow, or another Buckinghamshire based brewery please let me know if you can help! I would also love to hear from anyone who fancies organising the Challenge….as you can probably imagine, trying to sort out 40 of these is pretty labour intensive and so far I’ve only got 3 fully ticked off on my list! I’m putting together a list of ‘drivers’ too so advance thanks to Fintan and Rakhee who have already said that they are happy to drive….hopefully we can have a few more to help in the long run.

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If yo 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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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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