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..

Monday, 31 October 2011

At last....some positive news :)

I don't have Breast cancer :)

On Friday, I had my mammogram and appointment with the Breast care clinic. Met with a lovely consultant, Mr R, who I had a long chat with prior to the mammogram and asked him if it would be possible to get my results same day. He said that normally they wouldn't do this - however because he felt that I had more than enough to be dealing with he agreed that he would get the result for me that day.
After my mammogram (which if you've not had one before was uncomfortable but not painful in any way) I met with him again and he informed me that it was, as I'd expected, completely clear.
Therefore it appears that the tumour on my spine has indeed come from the original rectal tumour and has found itself a new home in my spine.

Mr R was the most lovely man and we had a chat about 'options' now. I told him I'd done some research myself on cyberknife treatment. I expected him to say this wouldn't be available to me but he actually said that as far as he's concerned 'all options are now on the table - including cyberknife'. He informed me that he wants to take my case on as his department deal more often with spinal mets than my current colorectal team.
Spinal mets in Rectal cancer are relatively rare - less than 4% of cases worldwide - therefore he feels that his team are better equipped to deal with this and has agreed to take me on, regardless of the absence of any breast tumours.
He feels I'm a bit of a puzzle and therefore interesting to him...it's not only unusual for spinal mets to develop from Rectal cancer, it's also highly unusual for this to happen so soon after my original surgery and without the appearance of mets to the liver first. Therefore as I'm unusual the 'NHS resources are now at my disposal '....:)
I really liked Mr R - felt confident with him and I know he will do his best to provide me with a quality of life.

We discussed what my priorities are and I explained that I'm fully aware of the seriousness of spinal mets, I accept this and my main priority is now removal of the pain.
He feels that he can achieve this - at least in the short term. We talked at length about a couple of options, cyberknife, radiotherapy, short term chemo or neurosurgery....Now, I admit I took a very deep breath at the thought of surgery on my spine BUT if it makes a difference to my quality of life and he feels that is the best option then this is the path I will have to follow - but I admit to being totally scared about spinal surgery!

He assured me that now I'm officially under his team, things will start to happen quickly.... He explained that things HAVE to happen quickly now because spinal compression can cause damage that absolutely cannot be reversed therefore it is essential that things now happen fast.
He also insisted that I could not leave his department on Friday without first seeing the Palliative care team so that they could start working on immediate pain relief. (I had previously been referred by my colorectal team but was waiting to hear from them). He contacted them and asked that they come down to his department and meet with me today as he felt that it is completely unacceptable to be in this much pain

So I waited and met with a lovely doctor, Dr D, from the Palliative care team who talked through the pain symptoms with me and tweaked various medications to give some immediate relief from the CONSTANT pain I'm now in. He also carried out some neurological tests to ensure that the reflexes were behaving as they would expect and that there was no sign of imminent damage being caused...he explained that if he was concerned about this I would have been admitted on Friday. However, so far things are 'okay'...
I've been warned about signs to look out for and instructed to get myself to A&E immediately should I notice any of them.

So, to relive the pain I'm now on 5 different types of medication - short term - whilst they make decisions on what to do. Mr R's team are meeting this Thursday to make decisions on the next step/s.
He feels that in the short term I am 'fixable'...in other words they can do stuff to reduce the tumour and relieve the pain. What they probably can't do is completely remove the tumour - but they can try to control it and therefore give me back some quality of pain free life for as long as......So for now, I'm concentrating on what they can do rather than what they can't do.

I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.

By the time I arrived home there were three messages on my ansaphone asking if I could come in for an MRI on Monday...so true to his word, things are happening now 'urgently'...Then later on in the evening I received another phone call asking if I could come in for the MRI at 12.30 on Saturday instead!.

So on Saturday I had my 45 minute MRI to check the spine area again. Mr R wants to see how deeply into the bone the tumour has embedded itself and also wanted to check the vertebrae involved. The Radiologist informed me that I was back in on Thursday 'for a procedure' that Mr R has organised! I told her I wasn't yet aware of this....she smiled and said Mr R works fast, you'll be told next week.
She then asked if I wanted to know what I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!

I've spent the weekend feeling really drugged up but definitely in less pain now. The pain med's are working but the result of this is that I'm dizzy constantly, feeling sick 24/7, and need to sleep much more than normal - however the pain is less than it was prior to Friday.
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.
I'm hoping that as the med's get into my system I may feel less nausea - or at least it might not be ALL the time. Right now concentrating on anything beyond a few minutes is difficult, because I feel completely spaced out all the time therefore I've decided to take this week off work and get the pain med's sorted first. I'm hoping to be able to go back next week because if I'm working then things are 'normal'...and I want to stay 'normal' for as long as possible.

It's taken me two days to write this update...I've had to do bits and then go back to it later due to my lack of concentration and also needing to go back to sleep. But on a positive, at least I can now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.

I feel very optimistic about Mr R and his team - so it's all good right now :).....still scared about a spinal biopsy though and even more scared at the thought of spinal surgery!

Keep things crossed for me eh? Much luv xxXxx


  1. my fingers are crossed for you Carole, Mr R sounds liek he will help with everythign he can which is good news, Im glad you managed to get painfree sleep, and hope with a tweek here and there you start to feel less sicky on the pain meds, big hugs Carole you are always in my thoughts xx

  2. So wonderful to hear good news re the not having breast cancer and also to hear you've got a new doctor who actually does care, and gets things moving!! It's about time, frankly! Not surprised you took a big "gulp" at the thought of a spinal biopsy, but it will be fine. Really it will.

    Love ya loads and loads, but there's a shortbread finger winking at me and I must attend to it!!! Catch you soon, dozy! xxxxxxxxxxxxxxxxx

  3. Fabulous. Thanks for updating the blog Carole. Things are sounding positive. Not the best place in the world, but better than limbo land I guess!

    It's fantastic that you have this lovely mr R to look after you now. I want to give him a big kiss :)))

    I do wonder what would have happened next if he had said 'sorry, you're not my problem, you need to go back to the colorectal team.' It makes me think that not only is it bad luck to get cancer in the first place, but also extremely bad luck if it isn't breast cancer, because the level of funding - and therefore the level of care you receive - is way better if you get breast cancer....?

    I think what I'm trying to say is this - 'do you think you've found yourself with the right doctor bloke who genuinely cares, or have you just found yourself in the right department following your mammogram? Or maybe a bit of both?

    Anyway, it sounds to me like you're in good hands now - and for me, that means everything, despite the zig zaggy path you had to take to get there. :)))

    Much love as always


  4. Hi Carole,
    It's Jan from JRS.
    Glad to hear that you are being sorted out with pain relief and hopefully the nausea will stop soon.
    As for work, you know that it will still be there when you're ready to come back and be 'normal', not sure how you manage that at JRS but if it makes you feel better about everything then it can only be good.
    I look forward to getting a new progress report when you are feeling up to it.
    Until then, you take care of yourself.
    Much love

  5. Oh Carole,

    I so wish you weren't in this position but pleased that you are now finally being looked after as you should be. It makes all the difference to feel like you are not just a commodity.

    I am also seeing the palliative care team which makes all the difference as they tweak on a daily/weekly basis as you have noted and not just to see them every couple of months...I am hoping your body will get used to the tablets and not make you so sick...I am on Zomorph capsules and Oramorph (liquid morphine) alongside this other potent stuff called amitriptyline (which knocks me ou). I guess you may be on a similiar regime although there are many drugs for them to try.

    Thinking of you dear friend

    T xx

  6. So pleased that someone is taking charge Carole- he sounds like a gem! Lots of love and virtual support being sent your way xxxx

  7. That was from Alice btw!

  8. Hi Carole,
    Mr. R sounds like a real gem.
    Getting things done quickly, which is clearly his plan, leaves you less time to be scared.
    I understand the fear, I would be bricking it too!
    Mr. R sounds as if he really knows what he is doing, and I am certain that he will do as much as he can to relieve your fears, and that he would do nothing that would cause greater harm.
    My thoughts are with you....and yes, keeping everything crossed.
    Blessings as always,
    Carol. x

  9. Carole, this all seems really good news to me and I'm very glad to hear it! Obviously you'd prefer not to be on this journey but it can take you to some pretty good places along the way. Hope you get the meds tweaked soon...

  10. Thank you for the comments - still 'fuzzy' headed so apologies for not responding individually today.

    Shents - re the comment about Breast care vs other depts...interesting one. There is a completely different atmosphere in the Breast care unit. People actually smile at each other in there and it's an all round nicer place than the normal place I have to go.

    I feel that Dr R is genuinely a nice man, genuinely interested in me both as a person and as a patient, I feel that he will do what he can to sort me out in some way :)
    Feel lucky *and drugged*...LOL,
    catch up soon xx

  11. I have a newfound love for the letter R! Love this man, even though I don't know him :-)

    I am so glad things are looking up, and I hope they continue to do so.

    This drugged up state doesn't sound so bad....maybe I am seeing it from an angle I shouldn't be seeing it from. But you LOL'd it at the end of the drugged up sentence so I am assuming its not a bad state :-)

    Always here xxxxxxx

  12. Dear Carole,
    I'm so glad to know that you are finally at the top of somebody's list! It is a relief to hear you are getting the care and attention you've been needing so badly. It sounds like you have a team that will really step up and help you fight this in every way possible and without all the usual delays. I'm sorry you're having so much reaction to your pain drugs. Hopefully that will improve soon so that you can more fully enjoy the break it is giving you from your pain.
    xoxox Carla

  13. Sounds like you're in good hands now. Anyone who can make things happen fast in the NHS is a super-hero in my book!
    I've heard good things about cyberknife. There was a guy on Macmillan chat who had a number of cyberknife treatment for brain mets (I think the original tumour was kidney). It sounds scary but less yuk than chemo.
    As you say, give the pain meds a chance so your body can see if it likes them or not, and if not, then no doubt the pain team can tweak them to suit. Anything has got to be better than not being able to function with 24/7 pain.

  14. Just a quick note today carol to say thank heavens you finally seem to be getting the care you need and deserve. (Not that you deserve the illness obviously) My thoughts are with you on your new journey. Much love and hugs xxx

    (ps Stevies dad's short battle with liver cancer came to a swift end early hours of Sunday morning)

  15. I'm going donate another £2 to Trinity Hospice, to celebrate your pain relief! As you may well wish to use them in the future. Krys's mum is getting massages from her local hospice for pain relief on her spine and said that is is really helping. I looked at buying some cards from them but you know how useless I am at sending Christmas Cards so will just do another small donation nearer the time. Hope your meds side effects settle down soon xxxxx

  16. Good news Carole.

    Best wishes,


  17. Hi sweetheart...no words can change what you are going through but I just wanted to say you are one of the strongest,bravest people I know.....Keep fighting Lovely ,you are an inspiration and Rock ....So previleged to have you as my cousin......Love ,hugs from us all xxxxx

  18. Just caught up with your blog this evening. It's been a few months since I've read it. Terrible, terrible news about the tumor in your spine. Keep your spirits up and keep fighting. Thinking of you and sending positive thoughts your way from across the ocean!! -Doug

  19. Hey Doug :)

    Great to hear from you and even better that you're not needing to blog so much now. Am so glad that things are going well for you, your blog really helped me before my op last year.
    Don't forget to update when you get your latest results etc because I still check back there regularly :)

    I will keep on, keeping on. It's not in my nature to lie down and give up without giving this bastard c tons of grief first.
    Much luv xxXxx