About Me

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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..

Sunday, 11 September 2011

GP appointment - Friday, 9th September 2011

As previously discussed in my last post I managed to get myself an appointment with the GP on Friday afternoon.

I explained that my list of issues was growing longer by the week and that I also still hadn't received the letter from the hospital team after my outpatients visit there in July. He had now received it and printed me off a copy.
So we sat and went through it together - not that there was much in it to actually go through!

I pointed out a number of things that I remain unhappy with (in this particular letter and with regard to my after-care)...first off it states in the letter 'completed Chemoradiation treatment in July 2010'......
........Chemo was stopped after just a few days and Radiotherapy was stopped after 18 sessions due to excessive burns and skin damage...NO mention of any of this and as far as I'm concerned that is important information for my GP to be made aware of.
Letter also goes on to say 'good response to neo-adjuvant RCT' which again was not what the surgeon told me back in September. He actually said 'minimal response - the Radiotherapy did not destroy the tumour and it is virtually the same size as pre-treatment'...

Then it mentions that Carole  'is concerned about her ongoing tiredness and weight loss'.......
No I'm not...I AM concerned about the overall fatigue I still experience at times but at no time did I say I was concerned about my weight and I've definitely NOT lost weight - I'm back to my pre-surgery weight which is where I've been all of my adult life.

The letter then gives two completely inaccurate dates for CT scan and MRI scan (both in August)...I informed the GP these were both wrong, did not take place and were never planned to take place.
I showed him my letter for my next CT scan (in September) then we discussed that my outpatient appointment had been moved to November - he was not happy with this decision and will be raising with the hospital team.

He was also concerned about the decision to rescan the pelvic area after Christmas, which will be 6 months after they noticed 'inflammation' in the original tumour site....again he is going to ask for clarification on that decision. He felt that if something had raised concern in that area a rescan should take place after 3 months - as is happening in the lung issue. I said I was definitely unsure that leaving it for 6 months was wise as if it was the worse case scenario, we are giving half a year for new growth to take place.

My letter ends with 'patient declined adjuvant chemotherapy due to significant toxicities with neo-adjuvant'...which is exactly what I'm pointing out to the GP - how could I have completed in July 2010 when in the same letter they point out the toxicity problems caused....

At no point in this letter have they mentioned the bone issues I've been experiencing, no mention of either the shoulder or rib area despite me raising it with the surgeon.
Also no mention of the rectal wound that still hasn't healed, no mention of my concerns that my breathing never did return to normal after my op, no blood test results reported to him.

The letter sent to my GP makes me sound like a completely healthy person who has complained of feeling tired and being skinny !!!
Oh wouldn't that be so bloody nice just to be 'tired' and 'thin'......

My GP is writing to them on Monday (email) and raising questions about my care plan and also asking about the bone issue - he is happy to send me for a bone scan but wants them to say it is advisable first (I don't know why - and to be frank, I don't much care, I just want to find out what is causing this ongoing pain).
I asked if I could go ahead and book a couple of osteopathic appointments whilst I'm waiting for him (GP) to get back to me - he said 'No, absolutely not - we need to wait and see what the scan shows first'...I asked him what his thoughts are and he said 'We have to consider all possibilities, including the notion of secondaries'.....My thoughts exactly - thank you GP :)

My GP is going to ring me Friday morning with an update of all issues raised and tell me what the plan is for a scan on the bones.

So in the meantime I'm taking over the counter painkillers at night, just to try to take the edge off it so I can get some sleep in. Update once I know more..

Going to do a separate post later on about other things going on in my life - unconnected to cancer things :)


  1. Carole, this is bendeschaad from the USA. You are riding quite a coaster! I will read the rest of your blog as the day progresses.
    As you know I too, have battled cancer, and am now in remission. I still get fatigued. If O.k. by you I shall post your blog link on my blogsite.....bendeschaadsthinkingagain.blogspot.com....also on my facebook page.

  2. Hi Aaron,

    Yes it's fine to link my blog anywhere. I'm just hoping that even one person finds it useful or just puts their mind at rest that they are not alone dealing with this.
    Thank you - and I also will be reading through your blog later today :)

  3. Great post for information and accuracy...not so good when I am sure we your friends start to worry what the pains etc are leading to.

    Speak soon Dear friend

    T xx

  4. Oh for God's sake! Based on the performance of that hospital, is it any wonder the government wants a complete shake-up of the NHS and care put almost wholly in the hands of GPs! In your case, it's just as well your (various) GP(s) have been sufficiently on the ball, 'cos your care team at the hospital sure as hell aren't.

    Yes. I'm mad. Madder than a wet hen!!!!!

    Still love ya, though. Although it might be a toss up between you and Marks and Spencer's chocolate marshmallow biscuit things. xx

  5. Hi T,

    Fingers crossed eh :) xx

    Hey Lou,
    Tough call really between M&S choc marshmallow things or me....LOL.
    I really can't be arsed (lol) to get wound up about it all - I just want to know what's the cause and what can I do to sort it out.

    Hoping for muscle injury of some type, hoping for something that will respond to osteopathic treatment or similar - just hoping it's all simple this time really :)

    But I'm okay in general - just gets a bit uncomfortable sometimes

  6. Carole, only upon a second read read did I get the link....joke-humour between the title of this blog and, your diagnosis.
    Us cancer patients really have a wicked sense of humour that, I believe, helps us stay sane. Very good...yes....very good.

  7. Thanks for sharing the update sis. No words, except "love you and think of you everyday" lit sis xxx

  8. Dear Carole,
    I can't even imagine what you are having to deal with! Living with just the usual side-effects and unknowns of cancer treatment takes a heavy toll. (I've seen that with Steve's treatments.) What you are having to live with far surpasses that. I keep hoping you'll get some kind of break from all this insanity.
    I'm just glad that you have friends and family who support you. It doesn't change what you are going through, but it often makes a difference on an emotional level. We think of you often. Carla

  9. Hi Sis,
    Love ya back ....and think of you every day too...maybe I just need a holiday eh *crafty thoughts sneaking in now* LOL
    Big hugs xxxx

    Hello Aaron,

    You're quite right, without humour this blasted nasty *thing* would wear us all down completely...I need to find things funny sometimes - but then again I've always had a quite 'dark' sense of humour anyway. It's definitely proved useful over the past 16 months or so :)

  10. Hey Carla :)
    Great to hear from you hun...I was going to email you over the weekend but I blinked and it was suddenly Tuesday - I think you know what it's like dealing with day to day stuff and wondering where the time goes...

    I think I *will* get a break from all this soon Carla, it's just this last bit that's 'testing' me again for some reason...

    Love to you both - and Carla, I read your latest update on the blog - *you* need to get some rest as well sometimes y'know?
    Hugs xxxx