[HarmonyParticipant]

One year post-diagnosis and I still struggle to process the diagnosis. What I mean is, I know that I have it but I don’t know how I’m supposed to internalise the information.I feel and look healthy – and I’m grateful for this-but I don’t know what to do with the diagnosis if that makes sense. I want to put it in a box and bury it deep down but it won’t let me do that because it rares its ugly head every morning when I get up. I feel guilty for being this self-indulgent because reading this website makes me realise that diagnosed smoulderers are the lucky ones and there are so many who are worse off. On the positive, we have the chance to grab life by the horns and work out what we can do to make our lives and the lives of our loved ones better. So, I have cut down to part-time work in order to have more time for my family and myself. I have taken some creative writing courses to indulge that passion. I’m trying to eat more healthily. These are all good changes.

A few months before the diagnosis, my life was at a bit of a funny stage anyway. My marriage was in trouble -we were having counselling. I felt unfulfilled by my job and had this big crisis about turning forty.Classic mid-life crisis, I guess. When the diagnosis came, I wondered if all the stars had turned against me. Things were at such a low point that it was almost comical. I’ve never suffered from depression – sometimes I wonder why I’m not depressed. Something inside me makes me get up and carry on regardless. My children are my life and I carry on for them -I don’t have much choice because they literally push me on with their constant ‘what are we going to do today?’ I’m none of the cliches – I’m not brave or a fighter or someone who had a perfect life pre-cancer. When I die, an honest eulogy will simply say that I’ carried on.’ My dad always says ‘just carry on’so being an obedient girl of 41, that’s what I do.

[graham-cParticipant]

We all vary and we all have different personal circumstances and health histories and myeloma can occur in many different forms and in those forms affect people in many different ways, so we each have our own unique problems. For many people the word ‘cancer’ is like telling them they face inevitable and horrible death, but I lost a kidney to cancer seven years ago so the word doesn’t have the dread to me that it may have to others.

I have MGUS and I’m under the ‘watch and wait’ regime and I am receiving no treatment but MGUS could be defined as a malignant process. All treatments are a matter of risk and benefit in many respects. I have slightly bandy legs which could have been straightened years ago but it would have been painful, may have left me in constant pain and could have left me crippled. If there isn’t an immediate risk, as there isn’t with MGUS it makes no sense to potentially make yourself ill through treatment and possibly cause more health problems. With my kidney the decision was a ‘no brainer’ even though the risks and potential for adverse outcomes were significant.

My FLC results are out of range and to an extent that is medically significant with an adverse kappa/lambda ratio and all the texts I’ve read suggest that this is indicative of a poor outcome. However, I am aware that Haematology won’t act unless the rate shows a significantly accelerating level of FLC’s which can get into the 10,000’s which mine are nowhere near.

Ironically I have developed severe back pain this week which is a significant risk factor but not necessarily proof of anything. In fact at my levels it almost suggests the two things cannot be related. I only say this to point out that MGUS can affect your judgement and take over your life.

Often MGUS plus severe back pain adds up to myeloma that needs treatment, but by not allowing myself to become obsessive about MGUS I can be a little more objective. I’ve had an x-ray and will make sure I get to find out what’s in the report but there is no need for MGUS to become a controlling factor in your life. Getting the wrong treatment will do me no good and showing the medics that I’m capable of rational thought will make them trust me.

[Author]

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