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..

Friday, 9 September 2011

Sometimes you have to tell it like it is.........

Okay, been  a while since I've done a really honest update on me....I've scratched the surface, ignored things over the summer and said 'Yes, I'm fine thanks' so now it's probably time for an honest update.

Over the past few months I've been waiting to 'improve' - before my surgery they said in three months I'd be back to fighting fit and wondering what all the fuss had been about :) If only.........

I'm now 10 months post surgery and my list of 'issues' seems to get longer each week/month.
Apart from the fact that the rectal wound still hasn't fully healed - and probably won't now - the ongoing ache in the original tumour area is a real question mark. I know they said 'inflammation in the area that could be due to treatment' but seriously, I'm 14 months post Radiotherapy now and 10 months post surgery why would there still be 'inflammation' there? Puzzles me for sure.

It's not a noticeable problem until I sit upright for long periods, like when I'm at work sitting in one position for a long time. It's a dull draining ache just around the tail-bone of my spine and previously I could ease it by walking around and stretching but now that's not so easy.
This is because the rib pain/back pain has increased and now walking, stretching, bending, sitting and (most of all) lying down, are all really painful - sigh........The shoulder issue is a nagging ache but as long as I move the arm slowly and do not overstretch it, it's not a huge problem as such - the back pain is more limiting now. Once I get into bed at night it's impossible to turn over without waking because the pain is intense - and getting mobile in the mornings is taking longer as each week passes. When I first get out of bed I'm like a 90 yr old woman shuffling around and struggling to do basic things, such as bend down to pick up the cat bowl so that he can be fed or going downstairs to let him out and each step on each stair sends jolts right through my whole spine - the only way I can describe it is like electric shocks going through the whole body as the foot takes the weight, the spine reacts....
So.......am going to try again tomorrow to get an appointment with my GP to see what can be sorted out.

Another thing that recently pissed me off was I told you all back in July that I'd been moved to 'closer monitoring' due to the currently 'too small to call lung spots'....because of them they moved my monitoring from 6 monthly moderate monitoring to 3 monthly close monitoring. Okay, that all 'sounds' good, yes?...

I was last seen mid June and scanned around the 3rd week of June so my next CT scan is booked for 3rd week in September - all good so far.........

My next consultation with them, to report the results of the scan and 'check me' was sent and is towards the end of October - Soooo, I get scanned then wait 6 weeks (!) for results on potentially serious issues with the lung - in fact, let's use proper English here rather than medical 'chat - potential serious issues with the lungs = possible tumours on a vein around the left lung area - ...

I wasn't particularly happy with the 6 week wait after the scan - but it gets worse, 2 weeks ago they then write and say my October appointment is now cancelled and my new appointment is end of November - so, I'm having a scan 19th September then (supposedly) waiting more than 2 months for the results and THIS is 'close monitoring' ? ...............I was due to be seen again in December anyway under moderate monitoring  (ie: no issues on scans, bloods all good, everything seems clear so see you in 6 months = moderate monitoring)
Being seen in the last week of November does not say 'close monitoring' to me....

So guess what this means? .........Yes, I have to become an official nuisance all over again, I have to email my nice colorectal nurses and insist that my scan results are reported to me via email rather than waiting for 2+ months, I have to feel and behave like a nuisance again to get any answers - as if things just aren't hard enough some days :(

I read a report on-line the other night (you know how I like to 'know' things - lol)....the report was about a study they've been doing with MRI tests pre-surgery on rectal cancer. To cut it short, the idea was to see if MRI could reliably predict outcome and life expectancy depending on the effect that Chemoradiation had on the original rectal tumour.
Seems that my 50/50 chance of surviving for 5+ years has now been slashed to around a 27% chance of survival.........LOL, serves me right for wanting to know too much, eh :) ....Anyway, all that means is there is now something else I need to prove them wrong on :)

On another note, I read a different report which stated that over 50% of rectal cancer patients die within a year of diagnosis....Up yours! I'm still here......16 months post diagnosis and counting :-)))

Catch up soon


  1. Hi Carole, Sorry your aftercare remains poor. I'm so pleased we don't live in your NHS area. My Stevie's care both before and after treatment has been a completely different experience.... About that pain in the 'tumour site'. Stevie and I recently attended a post surgery group gathering at his local hospital to discuss various experiences of care on the Enhanced Recovery Program. (All patients had undergone colorectal surgery) One gentleman was unhappy with the lack of information he received post surgery. It seems he was suffering a lot of pain and discomfort in the tail bone area, sometimes so bad that he was having to kneel rather than sit. A few weeks after surgery, a nurse casually mentioned that he was bound to feel uncomfortable as his coccyx had been broken during surgery. Medical staff clearly knew about this right from the beginning but chose not to mention it!?? My point is, could your coccyx be damaged? Maybe not broken but damaged? Hope you get some answers (and remedies!) soon. Carole you're an inspiration and I truly don't know where you find the mental energy to continue with your (quite in depth) blogs while you're feeling so unwell. I hope you find solace soon. Much love, Nicky xx

  2. Hi Nicky,
    I was really pleased to see a comment from you because had frequently wondered how Stevie got on with his surgery and recovery.

    I will definitely raise the question about the coccyx - have now managed to get a GP appointment for this afternoon (Friday) and hoping to make some progress via them now.

    If not, am also considering seeing an osteopath as it could just be that I need some serious re-aligning *spine wise* - I'm fairly sure they pulled me around quite a lot during surgery so maybe, just maybe it's nothing more ominous than that :)

    Thanks for keeping in touch - love to you both xx

  3. Hello my lovely! I think, if you can face it, you should copy & paste large, relevant chunks of your blog detailing your treatment at, and post, surgery. Turn it into a letter and then send it to: a) the chair of the NHS Trust treating you; b) your MP; c) the Secretary of State for Health; d) one of the cancer charities. Ask them to tell you which part of your post surgical treatment and aftercare they believe to be adequate and acceptable. You might even copy in David Cameron. You never know what letters of that type can achieve - and what have you got to lose?

    Love you more than the Cadbury's chocolate raisins I'm currently scoffing. Fingers crossed for you for this afternoon. xxxxxxxxxxxx

    P.S. The new colour scheme is nice and fresh! x

  4. Hi Carole, So sorry to hear that you are having such a bad time of it.......I have to say that I think that the care and after care that I am receiving is really good...(so far, anyway). I really hope that your Doctors appointment helps, and gets things sorted for you....you do so much for others and support so many people, I feel that is really, really crap that you are still suffering as you are. I know what you mean about wanting to know things, I am the say, and you don't always get the answers that you are hoping for...but they are generally just averages, and as you are so much above average in every way, they wouldn't apply to you any way! :)
    Please keep us informed with regards to the out come of your Doctors appointment.
    Thinking of you always,

  5. Hi Lou,

    Not got the time, energy or inclination to take things as far as that...right now I'm letting my GP deal with it all. Will explain in my next post...
    Mmmm, to the chocolate raisins ideas :) Hugs xx

    Hi Carol,
    I'm glad that you are getting adequate after-care, mostly everyone seems to...
    I'm not sure why I feel I've slipped through the net really - however things are being done to correct this.

    As you say, statistics are averages - fingers crossed that I fall on the right side of the fence eh :) xx

  6. Carole - how many times have you advised people in the past NOT to get on google?

    So what are you doing on google?!

    I really hope your GP has helped to get things back on track re your care. I hope they gave you an opportunity to tell them exactly what you've told us and then done something about it to make you feel less frustrated and anxious. You deserve SO MUCH BETTER, and should NOT be made to feel this way.

    Much love and hugs coming your way

    And STOP GOOGLING! :-)))

    Shents xxxx

  7. Hi Shents,

    I'm sooo nosy eh :)))

    I promise it wasn't a 'random' googling session, it was to do with a link that Cancer Research sent me and it was relevant to my GP visit...no more googling (at the moment until I need more info - lol)...

    Anyway, gives me something to aim for to prove them wrong - again :)

    Will do an update on my GP visit - but it was helpful xx

  8. God these delays make me sick. On the liver support forum I help admin is a guy who was told in April his liver was failing and he needed to be assessed for transplant. He was referred to a transplant centre (one of 6 in the UK). So far his assessment dates have been cancelled FOUR times. They have told him that despite him having had various necessary scans and blood tests to kick things off 'nobody on the team has the time to look at the results yet'. His appointment has been put back to October now.
    There are over 400 people on the waiting list for liver transplants, this man is dying slowly, and 'nobody has the time' to even get him past the first hurdle which is to see him!!! WTF.
    Rant over.
    I feel so helpless for you Carole, as I sit here smug in the knowledge that my aftercare has been so good.

  9. Hi Fiona,

    Sometimes I feel that people are seriously let down and your man above, liver failing needs help NOW is one of those times...to be frank, it disgusts me that people can't use a bit of initiative and common sense to sort him out - before it's too late.

    I'm happy to hear that other people are getting good aftercare - both because you all deserve it and also because it proves to me that mine is not good..I'm getting it sorted though :)