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, 13 November 2011

Next Steps on the long winding road.........

After my spinal biopsy last week I was quite sore around the spot where they'd taken their samples from, in addition to the 'normal' daily pain in my spine. I'm sure now it's a different type of pain because I had two pains at the same time - the draining, constant dull ache in the spine from the mets PLUS the soreness around the area of the biopsy...however, now I'm back to just the one pain, the soreness at least has eased off.

Saw the palliative care team on Monday and had the pain med's tweaked around  a bit. We are reviewing in two weeks to do the same again.

Wednesday I met with the Breast Care (BC) team. Saw a very nice Doctor who discussed the MRI results with me. They showed 'a mass around and covering T9 with further limited spread into T10. Bone is impacted along with vertebrae around that area - but at the moment no spinal compression'.
MDT meeting on Friday decided after reviewing MRI that the way forward is Radiotherapy - 5 sessions over a week (Mon - Fri) starting this coming Monday.
The purpose of Radiotherapy is to reduce the 'mass' as much as possible and repair the damaged bone in that area.
The biopsy results are not yet back from the lab - however she feels that it will show the origin as being 'rectal' rather than a new primary.

We discussed why Cyberknife isn't an option and she explained that it is due to cost reasons. She explained that it hasn't been taken off the table but has been delayed for now because as it's an expensive treatment they would have to apply to the Cancer Fund for funding - the Cancer Fund would then refuse saying that they hadn't tried normal Radiotherapy on that area yet.
They would then have to do this first then reapply...all this would take at least 6 weeks, during which time I'd be having no treatment.
Therefore the MDT decided to go for normal high dose Radiotherapy and if they don't get a good enough result they WILL apply for funding for CyberKnife
We also talked about neurosurgery - she confirmed that they do not want to risk it at this point. The 'mass' is larger than they'd want it to be for surgery purposes and therefore they wouldn't be able to guarantee a good result with a positive outcome. It's major surgery and after weighing it up they've decided it's off the table for now. I really didn't want spinal surgery anyway.

After the Radiotherapy, they are interested in using  Bisphosphonates

IF these treatments work she feels they can buy me time  - 'possibly even as much as a couple of years compared to the alternative of months'....Therefore, much now depends on the Radiotherapy initially - then the Bisphosphonates afterwards.
However, if the Radiotherapy didn't work I'm not sure where we go from there - therefore it HAS to work this time :) Simple eh :)

Had my Radiotherapy planning meeting on Thursday. Four new tatoo's - so now I have seven in total :) Brief chat about side effects, usual stuff.

So, have Radiotherapy every day next week - side effects may include extreme tiredness, nausea and vomiting but NO burns this time :) Pain may well increase during treatment and for a week or so afterwards then if it's worked, pain should reduce dramatically or even disappear for a time.

Following Monday I have a follow up with palliative care. Then a further appointment with BC team on 30th November.
I also have a colorectal check up appointment on 28th but will probably reschedule this - because I've had scans recently, they've all been checked and double checked, my next CT is on 19th Dec to check the lung question so it makes sense for me to see the colorectal team AFTER they've got these results and we've got something to talk about, rather than me just stopping by for a chat about things that are already being dealt with now.

I just want this ongoing pain to give me a break now. I'm totally fed up with it...........


  1. All hands to the pump...

    Sounds like such a flurry and whirlwind of activity after so much time spent wondering, waiting, worrying, and in pain.

    So, Monday then. Day one for radiotherapy - and the first day on the road to a pain free existence - or at least, manageable pain. I'll drink to that.

    I glanced over the 'buying time' paragraph with 'la la la' in my head...can't quite get my head around that one.

    Think about you every day, and sending you lots of love and hugs,


  2. Oh Carole
    Where do you get your incredible strength from?
    I so hope you get some relief from pain very soon.
    With warmest wishes

  3. Two years? Gulp.
    Hugs ((0))

  4. I shall be thinking of you extra hard all this week, Carole. xxxx

  5. Carole,

    Sounds like a good plan...don't like the cost question of cyberknife even if it does sound logical that the funding team will require radiotherapy to be tried first...with avastin there was a big question of cost and was noted at one of my regular oncologist meetings on a Thursday. Our next meeting 3 weeks later she said funding had been approved and we would be starting within the week. I suppose it was easier and quicker as there were no cheaper options available for them to try on me first. Again they look like they have a good plan of action and I guess you are looking forward to that pain disappearing for a while at least.

    Chin up me old china.

    Tony xxx

  6. Bloody hell Carole, you are one heck of a courageous woman!! I read your post with amazement, you sound so strong and determined, even in the face of such pain and not such great news!!
    I'll be thinking of you every day next week and hoping that the treatment does all that it can!!
    Take Care lovely lady!!
    Chezzy x

  7. Will be thinking of you all next week (not that I don't think of you otherwise!). I know someone who has kidney cancer with spinal mets. She's had radiotherapy recently and it has made a huge difference to the pain she was experiencing. So, fingers crossed eh?

    Love ya!


  8. Carol i stumbled on your blog by accident ages ago and have been trying to read it all (I still haven`t managed that yet) But i saw tonight how difficult things are for you at the moment. I know words are not enough but I just wanted to say that I really do wish you well with your treatment and i wanted to send my love to you and your family. I always think its worth remembering that as brilliant as some of these Drs are they do not know it all, and my sister proved them wrong for a long, long time.
    Take care and look after yourself Carol
    love sally xxx

  9. Hiya Shents :)
    After waiting around and being left to my own devices for so long, it really HAS been a complete whirlwind these last two weeks.
    I'm totally happy with my current care plan...

    If I'm pain free within the next 3 weeks I'll definitely be raising that glass with you
    Much luv xx

  10. Hi Mimi,
    Thank you for the good wishes...I'm not particularly strong, I just find a way to deal with what life chucks in my direction.
    So, it's either cope or give up - I'm just not a quitter (and I like to be awkward :-))....) xx

    You know you're always in my thoughts too. Lovely to catch up properly the other day xx

    Hugs back and apologies for not catching up with you via your blog recently. I will do that this week xx

  11. Hi Chezzy :)
    I'm *determined* to sail through the Radiotherapy this time & believe I had to get my mind into the right frame to do this easily.

    Last time I dreaded it, was already in a confused state due to the diagnosis - this time I'm like 'Ok, fine - so what are we doing then'...No shock, no surprise, no confusion just 'What can we do that provides quality of life'

    I'm not sure that I'm particularly courageous - maybe delusional is more appropriate at times :) I sit here and find myself thinking that they're wrong and I'll prove it - by surviving (at least longer than they think I can/will).... :)

  12. Hi Lou,
    Thank you for sharing that - am optimistic that this will also apply to me....:)
    Love ya loads too and hoping to be able to get together once Sarah's here
    Hugs and much luv xxXxx
    PS...Sort your landline out eh! :) xx

  13. Sally, welcome to my world :)

    Thank you for taking the time to leave such a nice comment.
    I'm in total agreement with you that they don't always get it right (Doctors) - I'm feeling well apart from this pain, so if I can sort that out I plan on proving them wrong, like your sister, for a long time :)
    Much luv xxXxx

  14. Hey T :)

    I'm not stressed about the cost thing and the cyberknife, simply because they said if I do turn out to need it they'll make sure I get it.

    I see their reasoning that it's better to start now and try to sort out this pain - rather than wait up to 6 weeks, then have to start normal Radiotherapy anyway.
    I think as you said, the Avastin issue is different as there really isn't an alternative that is tons cheaper.
    Re Avastin - I told you recently about the young 29 yr old who needs it, and has been denied as she lives in Wales :( Sad.....

    As for looking forward to getting rid of the pain?....Noooo, I've got used to it now, I'd miss it LOL ...roll on pain free time
    Hugs xXx

  15. Gotta sort my landline out hun, just in case my dentist needs to get hold of me! LOL xxxxx

  16. @ Lou...LOL - keeping my fingers and toes crossed that he does ring :)

  17. Hi Carole,
    (Haven't been on for a bit)!
    Great to hear that cyberknife is not totally off the table. And fantastic news that the radiotherapy will not leave burns!
    Hopefully the tweaking of the pain meds will help.
    Always thinking of you.........sending love, light and positive vibes!

  18. Carole, Good Lord, you have been dealing with a lot! I am so sorry about the mets, but no spinal compression is a good thing. It does sound like you have a plan you are comfortable with and that counts for an awful lot. I will be thinking of you as you continue on this journey you never wanted to be on. I hope the pain is under control soon. Keep on keepin' on, Carole. My best to you.

  19. Hi Carol,

    Always thinking about you too hun...hoping you get some decent answers from your scan. xx

    Hello Nancy,
    Nice to hear from you as always :)
    Yes you're right, no compression is definitely a good thing and my treatment plan is keeping me happy, for now.
    Almost done with the Radiotherapy now so then it's just a case of wait for the side effects to kick in, and hoping for the best outcome - less/no pain