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I am 45 years old, Married to Sean for nearly 20 years and have 3 lovely children Hope is 16, Jack is 12 and Joe is 6.

Wednesday, 28 July 2010

Latest Shananigans!

Hi All

Sorry for absence...lots to keep me, family, house and the latest round of hospital appointments!

And the hospital appointments is where I'll begin. Something which many will not realise is the long term effects of the type of chemotherapy that I was given - infertility, neuropathy, vertigo, deafness, possible heart problems, increased risk of other types of cancers, kidney name but a few. And yes, you guessed it I've experienced/am experiencing most of them. I think the thing which grates on me sometimes is the fact that I had all that treatment unnecessarily. I'm sure that if you HAVE cancer and the chemo saves your life these things are incidental or should I say tolerated. But when you didn't and never have had cancer it is an even bigger blow to take. The reality is I am left with these long term irreversible side effects - fact. So I do need to just keep going to the appointments, have the monitoring then discuss and undertake the next course of treatment to deal with these things. I just think it makes the daily 'living with it' more difficult sometimes. So coupled with 'a bad leg day' sometimes I do feel like chucking in the towel. My newly found...or should I say refound (is that a word?!) addiction to exercise is helping I think. Ooooo that rush of endorphins is only comparable to a few things. Although after tonight's Boxercise I may be rethinking that! See how the arms are tomorrow!

Unfortunately when the Bone Tumour Service at The Royal Orthopaedic Hospital in Birmingham realised they'd made one almighty cock up i was dropped like a hot potato in terms on follow up. Hello....I may have had a benign tumour but I still had exactly the same treatment as someone with a malignant one!

Luckily one of the Social Workers there had a counterpart at Leeds who she contacted and I was slotted into the service here. I must say they have been fantastic ever since, always there if there's a problem and seeing me regularly.

Last week I went for my annual heart echo scan to establish if there is no cardiomyopathy (enlargement of the heart) which is a side effect of the chemo and can unfortunately occur at any time post chemo, regardless of how much time has passed, hence the requirement for long-term follow-up. I arranged for my Mother-in-law to sit with my son whilst I travelled to the other side of Leeds. I always ask for a woman sonographer in advance, as it is rather embarrassing having to strip from the waist up. Well guess what, surprise surprise, there wasn't one available. If I'd come 10 minutes earlier...errr my appointment isn't for another 10 minutes. To cut a(nother) long story short after being asked by a nurse in a very loud voice in the middle of a busy waiting room 'why I was embarrassed?', being given the options of 'hanging around' (for a couple of hours!) or coming back I burst into tears and had to have the scan anyway, but they were kind enough to give me a gown....

Why didn't I complain?....a couple of people have asked. Well, firstly, if I complained about all these incidents that happen I'd be branded a serial complainent! Secondly, I can't be bothered as I just want to forget about it and thirdly nothing is ever done anyway and you're labelled 'a trouble maker'.

Oh well, hopefully won't have to go through that again for a few months.

I will be back soon to update you on my hearing problems and to continue with the story of how I ended up in this situation


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