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, 18 September 2011

Sometimes you feel like SCREAMING!

Update from my GP as discussed in my last post..........

On Friday I finally managed to get hold of my GP and get an update - except there was no update. He said his email hadn't been responded to as yet so he was unable to tell me anything more and that he'd ring me on 7th October when he came back from holiday.
Oh cool.......yes, great, I'll just 'wait' then shall I? FFS!

So, keeping my cool I said 'What about this bone pain? I can't get a proper nights sleep, it's bothering me to stand/sit/walk/lie down, what shall I do until 7th October, I think I do need a bone scan'........he replied that he knows that I do need one, that I do need answers about this ongoing pain in the bones BUT he needs the hospital to say that I need a bone scan so that he can organise one....Pah! Back to square one then.
He then said that instead of ringing me on the 7th, come in to see him on the 4th October instead.
Ummmm........Thanks, have a nice holiday then.....


Anyway, moving on - tomorrow I've got a CT scan for the question mark on the left lung issue. They are rescanning me to see if the 'too small to call' spots have grown/stayed the same or best case scenario completely disappeared. I'll then email them in 2 weeks  and ask for the results because I'm not waiting until 28th November to find out the answer. (28th November is when they've moved my next monitoring appointment to)....

Today I've had a horrible migraine - woke up with it around 5.30am and took some painkillers then straight back to bed. Been in and out of bed all day and it's finally cleared off about 7pm this evening. Nice way to spend a Sunday :(

Yesterday I got up and my pain in the rib area was much much less than it has been so I started to wonder if maybe it IS a muscle related problem...then today when I woke up the pain was back with a vengeance so that little bit of relief didn't last long.
I know my GP said not to see an Osteopath but I'm thinking I might......just thinking about it at the moment..... because I feel I need to do something - something other than completely overdose myself on bloody painkillers all the time.

Catch up soon xx


  1. Can only think the smart thing to do is go right ahead and scream, scream, scream Carole. Cannot imagine the frustrations you must feel as you lisdten to your body telling you that you need to know what is going on. Hence the scan.
    I pray for a miracle for you lovely lady; that the hospital will recognise the necessity of the scan.
    My heart is with you xo

  2. I totally know the feeling of going in circles with people who are supposed to be the ones helping. Keep on top of them and don't take "we don't know" for an answer!

  3. Hi sis, hope the scan went well today. I am beginning to realise that although the NHS is there for you in the UK, I now see that your life IS really in THEIR hands as your hands are tied! Frustrating INDEED!! arghhh!!!Big Hugs xxx

  4. I'll join you in the screaming!
    A week after my liver clinic appointment, - the one where a decision was made to reduce my monitoring to 3-monthly because my blood results were so good, - I get a copy of the letter sent from the heppy doc to my GP. In it heppy doc mentions the three most significant tests: my tumour marker, my liver inflammation, my immune system. At Salford they take bloods at the END of my appointment which is daft as it means the clinic review is based on the previous set not the current ones.

    The tests taken after clinic show my tumour marker UP and my liver inflammation UP.
    Darn it. Now I have to hassle the GP for a print out so I can be 100% sure its not a mis-type, and then hassle again for some intermediary tests at around November. If things are going bad again I'm not waiting til January to get heppy docs opinion!

  5. Feel like screaming too for you Carole.

    Incredibly frustrating - the whole bloody thing.

    Sending you love and hugs. Hope the CT scan isn't too awful.

    Thinking of you xxxxxxx

  6. Hi Carole,
    Sorry I sound a bit green, but why did your GP say not to see an Osteopath? if somethings wrong could it do more damage? hope you get some releif soon, sounds like a nightmare, best wishes to you,
    Lynn x

  7. Hey Carol, I'm sorry things so rubbish for you just now. Am mystified why cancer care has to be so care-less. Is it budget thing? I don't even have an oncologist atm...mine's 'away'. Hope your pains go away a bit more anyhow...

  8. Hey Carole, I feel for you - still waiting for surgery I've needed since January but which was only first booked in September. Scan 1st Aug, follow up 18th Sept (moved to 9th) etc. Happens often.

    Pain - know that too. For two years in April I've spent only a handful of weeks painfree. It's now more painful when just sitting, walking, standing as well as awful when lying.

    The rib pain, maybe I can offer a glimmer of hope, I had agonising pain in my left lower ribcage when in remission (or so I thought haha)and it concerned onco enough to order a bonescan which took 2 months I think. Scan was clear. Explanation - possibly enlarged cartilage from some injury I did presumably when I was sleeping because I'd remember an injury that caused me pain every breath I took for a month. It settled and eventually went away. I was convinced I had either a tumour or a broken rib.

    I'm on yet more drugs on top of the rest to try and stop the pain - they don't work. So so so sick of it. To feel drained and not to be able to lie down, rest and sleep is so unfair with everything else we have to endure.

    At least neither of us is alone in this...small comfort xxx

  9. Hello Carole,

    I have been popping in to read your blogs from time to time and I thought that I really must comment. When my mum was suddenly diagnosed with terminal liver cancer last November at the age of 53,i immediately googled blogs to see how people coped with cancer, and im not sure how/ why yours
    have really helped me make sense of things (well, as much as possible!). I sincerely hope that you get those tests and results quickly as you have been through so much and all this waiting can't help. My thoughts are with you. I hope to not be such a silent well wisher from now on as you deserve to know that there are many people you read your blog and are rooting for you every step of the way! Alice xx

  10. Chez,
    Thank you for your prayers and thoughts when you are already going through so much yourself.

    One thing this journey has taught me is that there are many people are truly special in life - people who have their own ongoing issues with cancer, pain, problems yet still take the time to support others.
    I hope so much that things get better for you Chez xx

    I'm hoping that your move will be the thing that changes everything for you and Sheri. The new guy (specialist) sounds great...and yes you're right 'we don't know' really isn't good enough!

    Hugs back and I know you're always thinking about me - much luv xxxx

    Hope you get some proper answers soon - I'm starting to think that a huge part of all this *is* frustration.

    I say we should *all* have a joint screaming party - I suggest Friday 9pm GMT :))...and then it'll all feel a little bit better

  11. Hey Shents,

    Love and hugs back xx

    CT scan is a whole new post in itself....:(

    Hiya Lynn,
    I'm really not sure why he said no osteopath apart from the possibility of damage to the bones if there is any weakness there maybe...I checked on Cancer Research and they have an article which states that many cancer patients use osteopathy for relief...I'm moving in that direction at the moment, still thinking but gradually seeing it more and more as a viable choice.

    Hi Angel,
    My thoughts are along the lines of budgetary issues with this bone scan thing. I know it comes under nuclear medicine and is NOT a cheap option...maybe they feel I've had my moneys worth out of the NHS for now :))

    It's disgusting that you've not even got an Onco at the moment...keaving you with no support, as you rightly say shows a 'care-less' attitude.
    Surely there's more than ONE Onco in your area!

  12. *leaving (rather than keaving Angel - lol) xx

    Great to hear from you hun - just sorry that you're still in bloody pain, still struggling and still waiting for your op.....sigh......
    What IS the hold up this time?

    Thanks for the heads up on the rib pain you had - I'm still trying to convince myself it's muscular rather than something more ominous. Keep thinking it would have showed up on last scan if anything large enough to cause pain was there in the chest/rib area - then I think 'it's in my bones so that wouldn't show on a scan'...next minute I'm convincing myself it's an injury of some type....
    I just want to know *what* I'm dealing with really. I can't stand this limboland shit, all the time.

    Loopy, you are one of the bravest people I have had the pleasure to 'meet' on my journey. If I could wish even a fraction of your pain away I'd do it in an instant...gentle hugs and much luv xxx

  13. Hello Alice and welcome :)

    I'm sorry you had the need to find me but very glad you did...sorry to hear about your mum, cancer is so destructive and not only for the person who is diagnosed.
    Sometimes it makes me more stressed when I think about what this has done to my family rather than what it's done to *me* personally...

    Thank you for your lovely comments, it helps me loads to know that people are rooting for me out there.
    Much luv xxxx