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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Monday 5 July 2010

Monday blues.....:-)

Today I decided to go to the hospital early and see one of the Clinical Radiotherapy staff for some extra help with the pain and advice about treating the (still) extremely sore area.

I dropped Dj off to school then jumped onto the tube arriving at St Thomas around 10am. Got to see M within about half an hour - which was pretty good as I didn't have an appointment today officially today until 1.45pm....(makes mental note, turn up more often unannounced to queue jump - lol).

We discussed the ongoing pain, I said that although the Nu-Gel and Morphine mix had helped slightly it really was a minimal amount of difference. I still can't sit comfortably, stand comfortably, sleep without constant interruption and the continual burning pain is just totally wearing me down.
I also explained that I'm now scared about how much internal damage is being done - I can SEE the external damage but can only 'feel' the internal burns. I'm scared that this treatment is doing damage that cannot be reversed after treatment ends - basically I'm just scared and I've had enough. I told her I'm not continuing with treatment anymore.

Well, then everyone and his wife got involved....she talked to me, then she got a more senior Radiotherapist to talk to me, then a Registrar came along to talk to me - all saying the same thing, that to give myself the best chance of recovering from this cancer I HAVE to continue with the treatment. It's important that I finish the full course of 25 sessions.
I cried, they listened to all my worries, they talked some more, I still said No more treatment....round and round the houses we went really for an hour or more.

The registrar asked if she could have a look at the sore area again today - I agreed on the condition that she did not even attempt to touch.
After examining me she said

'Listen Carole, I'm going to be totally upfront with you...you are burnt, you are sore and the area is ulcerated, the pain relief you're taking just isn't strong enough and you now need to go onto oral Morphine today - then tomorrow you need to meet with Dr L and discuss how we can get you to continue your sessions.
They are important because without completing the course we have no idea if the tumour has reduced enough to go ahead with the op. Experience tells us that you do really need the full 25 sessions BUT experience also tells me that whilst you are in such pain it's not going to be a simple decision to continue
'

So I agreed that I'd start taking the morphine by mouth today and meet with Dr L tomorrow morning around 9.30am and we'd take it from there. I don't want to continue but after all is said and done, I think I'll have to really. Another decision that seems to have been taken away from me :-(

We discussed that at no time was I informed Radiotherapy would or could be this painful. She said it is solely due to the position of the actual tumour being so low down in the rectum. If it was positioned higher then I wouldn't have burnt in this way because the rays would have been targeted away from the sensitive tissue areas.
I feel like nothing has gone right for me for ages now :-(

So, yes I am feeling quite sorry for myself really - and yes I do know that it's not exactly helpful to getting over this or sorting things out but the pain has been so draining.

The morphine has eased the pain off a little today - I'm not exactly happy about taking it but have given in simply because I do need the pain to stop now. I feel a little dizzy on it and tired (not exactly physically tired though more just 'dopey' tired) but have decided that I'll just have to sleep more over the next week or so until I get back on top of things.

Update tomorrow after I meet with Dr L....I'm hoping for a better nights sleep tonight at least. This getting up every two hours (or less) is just too much now and I never seem to sleep deeply any more because every single move I make during the night wakes me due to the ridiculous stingy pain that shoots up through my insides constantly.
Maybe the morphine will at least help me sleep eh :-)

2 comments:

  1. "not going to be a simple decision to continue"! Thats an understatement. Sis, whilst you have to listen to their experience, you also are entitled to listen to "your body" . One day at a time sis, don't be bullied tomorrow, this has to be for you.
    Maybe with the Morphine by mouth, this will get you through the last few sessions. Big hugs sis, its 5am and I'm thinking of you as always. Any time of the night feel free to text me, there is no such thing as time here in Greece! xxx

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  2. A sharps bin and now morphine!

    I wish my being through this could help you more as you seem to be having a particularly hard time of it.

    Praying that the morphine will help you sleep as that is probably what will make you feel better about at least some of it.

    All the best dear friend!

    Tony x

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