>The Background

>So how did it all begin…a few coughs and colds that I’d got fed up with! So off I went in April 09 to the docs who slightly reluctantly offered a swab and a blood test. The swab came back clear so I never chased up the bloods…until I came back from a great holiday in Portugal with Nick, the kids and our friends and godchild to a letter asking me to go and see the doc about my blood test.

So off I went and was told that I’d got the protein levels of a 60 year old and been referred to the haematology department just to check it out. Well, I knew I felt old after 2 kids, but didn’t expect that! Within a couple of weeks Nick and I were making our way into the hospital to the 7th floor. I remember so clearly walking to the lifts and seeing the phrase ‘ 7th floor Sunrise Cancer Department’ and just bursting into tears – no-one had suggested cancer to me!!

The consultant told me that he wanted more blood tests run, xrays done and a bone marrow biopsy. I was so lucky in some ways and everything moved so fast. The long and short of it was that in July 09 I was told that quite surprisingly at my age, I had Smouldering Myeloma. Not quite bone marrow cancer but it might as well have been for the way it has turned our life upside down.

So what is Smouldering Myeloma. Well, sadly it’s not quite as sexy as it all sounds! It basically means that I don’t yet have bone marrow cancer but that I have pretty high odds of developing it, probably within the next few years. Myeloma is a rare form of cancer. It typically affects people aged 60 and over, and is rare in people under the age of 40. It affects more men than women. Blimey I feel damn unlucky! A 34 year old female with it isn’t the most common thing in the world!

What stops it being classed as Myeloma is that, as of yet, I don’t have any symptoms. What are the symptoms when they occur? Hmm where to begin, bone pain, bone lesions, broken bones, kidney failure, anaemia, night sweats, bruising, bleeding, spinal cord compression and lovely things like this! So in lots of ways I’m so lucky to be where I am now. I get 6-7 week appointments to check my protein levels so if things develop they will be quick to spot them – which is great in so many ways.

But without wishing to winge, it’s quite hard as well. I feel like I’m now living with a ticking time bomb…when will we get that bad news? When will I have to start treatment? Will the kids be old  enough to remember me as a healthy mum and not one who is constantly sick or in hospital? It’s now7 months on, and we’re getting better at dealing with it all and not letting it take over our every waking moment….but it’s tough at times. And people saying that none of us know when we’re going to die and that I’m lucky to get the warning ….well I’d quite like to tell them where to go!! When they have experienced living with being told that you are likely to die of cancer before the age of 50, then they are welcome to express that view! Moan moan!

So anyway, I thought that I would start this blog. And I don’t apologise now for the content of it, the language I might use, or any flippant comments I might make. This website is predominantly for me to write things down…at this stage, I’m not sure I’ll share it, but if I do, I hope you’ll view it as me allowing you into my most private thoughts and forgive me it it offends you at times.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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1 Response to >The Background

  1. >I'd just like to say good for you. It's fine trying to be positive and upbeat, but sometimes we all need to just let out the feelings of despair and rage. Like I said in my blog, we need scream booths. Never be afraid to be yourself. Being older I tend to have the attitude that people can take me or leave me. Keep up the good work. Lorna


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