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..

Saturday, 5 November 2011

Biopsy Day.......

Spinal biopsy day was Thursday...it feels like lots happened in just a week :)

I wasn't looking forward to the biopsy, was quite scared to be honest, but I knew it had to be done so plucked up the courage and went on Thursday for this procedure.
Had a chat with the Doctor who would be doing this beforehand and although still apprehensive, I knew he'd get it right. I was given the option of either sedation or general anaesthetic - so chose the general. I told him there was no way I could do this under sedation as I remembered the whole conversations of the staff who did my colonoscopy - I recalled them planning their night out on the Friday because J was leaving the department and going to work up North...I really didn't fancy recalling anything to do with needles being poked into my spine - so took the cowards route and had a general.

The procedure took about an hour and I was then back in recovery. During my recovery period I developed a stinking headache that made me feel really sick - like an early stage migraine. This was because I was dehydrated and once I got back home and got some fluids in me, whilst resting in bed, it then went off and I managed to get up, eat some toast and peanut butter (yum) and had a cup of tea - then went back to bed until 10.30am next day. How can you sleep that long and STILL feel tired!

Had a phone conversation with one of the Breast care nurses on Friday afternoon. She told me that they'd had their weekly MDT and they'd discussed what they want to do. Firstly they've looked at the MRI I had done on Saturday to check that there was no risk of immediate spinal compression (it is this that causes problems such as bladder incontinence and paralysis of the lower limbs)...luckily it was felt that at the moment there is no immediate danger of this - however they've instructed the other hospital to contact me immediately with regard to palliative Radiotherapy sessions. She wasn't sure about how many or over which period of time but I'll sort that out with the Radiology team at the other hospital.
I asked if cyberknife had been considered as an alternative and she informed me that yes, they had investigated this option, it had been discussed with the head of the cyberknife team but was decided that I'm not suitable for this - they also felt the same about spinal surgery. I'm unsure as to exactly why at the moment but will be having a meeting with them hopefully next week.
So the reality now is that the option available to me is palliative Radiotherapy and possibly biophosphates (not sure of the exact spelling and right now, can't be bothered to google it LOL)...more will be revealed next week when I meet with them.
Best case scenario is that the Radiotherapy will reduce the tumour and stop it from growing for a while....worst case scenario is that Radiotherapy does nothing to the tumour. Time will tell but obviously hoping for the best case scenario right now.

Breast care nurse T, let me know that the pain may well increase for a short time during the Radiotherapy sessions but after a week or so the pain should subside dramatically. The purpose of Radiotherapy is two fold, to attempt to reduce the tumour by killing off as much of it as they can and to attempt to repair some of the bone damage that has been caused. I'm just hoping that it responds this time to Radiotherapy because it didn't last time. After my 18 sessions of Radiation last time there was very little difference made to the original tumour - so if it is from the same original tumour, it may be stubborn - on the other hand it may just completely die off and I'll be sitting here saying 'Amazing, all gone' :-))
Now THAT would be a nice post to write for sure :)

After my biopsy he warned me that I had to rest for at least a week - as much laying down in bed as possible - no lifting, no carrying, no excessive bending or stretching as after a biopsy on the spine there is a slight risk of bone breakage. So, I'm taking it really easy for the next week or so and doing as I'm told, resting a lot.

Apart from that I have an outpatients appointment with the palliative care team on Monday to discuss tweaking pain meds and such stuff.

Dj has gone to spend the weekend with his big brother and the lovely Leanne. They are taking him out somewhere for firework night, it's always been a tradition that they take him to the fireworks every year and I'm hoping that even when Dj is 30 and J 49 yrs old they will still get together every November 5th :)
Because J has taken him for the weekend I can take the daytime dose of tramadol because if I need to sleep I can - when he's here I don't want to be constantly sleeping so reduce the dosage, but that of course increases the pain somewhat.....catch 22 eh!

So, that's what's going on at the moment - I am okay, if I can get rid of this pain I'd be able to say 'I'm good'...strangely enough I'm the best weight I've been for years, my skin and hair are in great condition, I eat well and if I didn't have this pain I'd be able to just get on with doing things...living my life...and just 'doing'..
Big hope for no pain soon so I can do exactly that :)

My lovely sister, Sarah, is coming over at the end of the month and I'm really looking forward to that. I've not seen her since March when I was over in Rhodes so will be great to be able to properly catch up again. I've also not managed to catch up with mum or dad lately simply because I've not been able to do the train journey to them, mum broke her hip a short while back so she's only just started getting a bit more mobile - I'm hoping to be able to see them next week once I've sorted out my treatment days etc...I know my dad's feeling neglected :-))

Oh and for all those who know me in real life.....Dj doesn't yet know about the spinal mets...he (obviously) knows I've had problems with my back, he knows that I've had 'some fluid taken with a needle to see if they can work out what is causing the pain'...and that's ALL he knows at the moment. I wanted to wait until after Christmas to talk to him about what is going on - if possible - I also want to make sure I have all the facts first so that I can tell him what the plan is.

Catch up soon - much luv to all xxXxx


  1. Hi Carole
    I just wanted to say how moved I feel after reading your post. I can hardly believe that with all you've got going on you still found the time and compassion to respond to my notice on CC re:my Dad's passing.
    You are one very special lady-thank you so much!!
    Take Care of Yourself.
    Much Love and (((HUGS)))
    Chezzy x

  2. Chezzy,
    I thought of Dad, Mum and yourself regularly. I've kept an eye out for a post from you about Mum's progress so was really sorry to see that your update was instead about Dad passing away.

    Sincere condolences Chezzy xxXxx ((hugs)) xx

  3. Hello, my lovely best friend! So glad to hear/see that the doziness of earlier in the week seems to have passed, and that your 'Spinal Tap moment' wasn't as scary as anticipated (told you so!)

    Bit of a bummer* radiotherapy seems to be the only option open to you, but I'm confident that this time round it will have tremendously positive effects!

    Great to hear Sarah is coming over soon. Know how much you miss her. Hopefully, we can all get together again.

    Love you loads


    * Oops! lol

  4. Hi Lou,

    I was scared but after I'd met the Dr I felt better about it all. He was lovely and explained everything really well.

    Yes, let's hope the RT does have an outstanding result this time. Not to moan or anything but I think I'm possibly overdue a little bit of luck!

    Be great if we can all get together once Sis is here. Looking forward to it
    Loadsaluv xxXx

  5. If I had half the strength you have, I would be a very very content person.

    I hope the radiotherapy sessions have the best possible effect on you. I hope they dissipate your pain.

    Indeed, you are due for a lot of LUCK. And I am sure a great deal of it is coming your way, including mine, which you more than deserve. Not sure how it works to be honest with you, but rest assured I gladly give it up to you. (picture me scrunching up my face, holding my breath, and "pushing" my luck towards you ;-) )

    Love you xxxxx

  6. Carole I admit I have not been reading other blogs like I should because of some issues I'm dealing with. That is no excuse I am so sorry about the Mets to your spine. I will keep you in my prayers to have some relief from pain..Love Alli XX

  7. Hi Carole

    I'm guessing the thought behind giving you bisphosphonates is to reduce the risk of bone fractures, as they are prescribed to people with advanced osteoporosis.

    When I got my osteopenia diagnosis I posted about it on my liver forum, and one of the members who is a nurse posted back to me about bisphosphonates. "Biphosphonates have a very small role to play in the treatment of osteoporosis, and virtually NONE in osteopenia. The benefit and risk must be weighed in each patient.

    One of the best ways to evaluate fracture risk in patients is the FRAX tool. Developed by the WHO, the FRAX is based on individual patient models that integrate the risks associated with clinical risk factors as well as BMD at the femoral neck. The algorithms give the 10-year probability of major osteoporotic fracture (clinical spine, forearm, hip, shoulder). The computer driven tool is available free on-line at:

    The decision to treat with a biphosphonate must be made using sound clinical judgment for each patient, but it has been shown that it is only cost effective for treatment when the 1-year risk of a hip fracture is above 3%. The one-year probability is approximately 10% of the 10-year probability. Thus, an individual with a 10-year fracture probability of 30% would have approximately a 1-year probability of 3%."

    I decided to argue against taking them in my case, and stick to a calcium citrate supplement alongside Vit D3 which increases the bodies uptake of calcium. Beware the side effects of too high a daily dose of calcium carbonate, as it temporarily raises the heartbeat while the calcium is in the blood before it gets to the bones. I also felt my cancer was a higher risk than a bone fracture and preferred to focus treatment on that, though of course your case is quite different.

    My elderley ladies take bisphosphates and they are ugly drugs to take. Large capsules you have to take on an empty stomach, standing up for half an hour or so as unless they pass through your oesophagus fast they damage it. In most people they cause bad heartburn.
    If your team insist you take them ask about the injection option.

    Hugs ((o))

  8. I'm happy to read that things are happening for you sis. And hearing that there is no immediate risk to the spine compression may give you some time out for the radiotherapy to work better.

    Feel so much better now that I've booked my flight, so looking forward to seeing you. If Lou can get down it will be nice to go to our Paddington haunt for lunch. It was lovely there.

    Really looking forward to seeing mum and dad as well, give dad a break too, bless him, 76yrs young! xxx

  9. Hi Fiona,
    Thank you for that information, I will be looking into it much more fully and weighing up the risks vs any potential benefits.

    Hello Alli,
    I know what you've had going on and have been watching your blog for updates. Sometimes hun you just have to think about yourself for a while so don't worry about other people's blogs, just keep as well as you can do and know that there are lots of people wishing good things for you.

  10. Lamia,
    I'm catching all the luck you're pushing in my direction and it will all make the difference :) Thank you for always being there and keeping everyone up to date for me.
    Hugs xxXxx

    Paddington lunch sounds great if I'm mobile enough by then, which I really hope to be. Really looking forward to you coming over and I know that mum/dad are too.
    Lotsaluv xxXxx

  11. Carole, This must be a tough time for you...I can see how brave you are being - as the word palliative is being used, I remember how I felt, especially as I had to explain the inoperable status. Stay strong me old china!

    Much Love

    Tony xxxx

  12. You are such a brave lady!
    What an inspiration,
    Hugs and blessings

  13. Carole,
    I'm hoping you'll get some good results out of all of this. It would be nice if some of the extra rest you're getting helped with the fatigue. I entirely understand your waiting until after Christmas to bring your son up to date. I hope time gives you some better news to share. We love you and are rooting for you.