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, 20 January 2012

And then....the shit hit the fan!

Well, not literally as I have a bag to keep it all contained remember :) BUT if I'd not had the bag things may have been very different.

Around 7pm on Saturday evening I started to feel really 'odd', queasy and just a bit generally unwell...nothing I could immediately put my finger on, just 'odd'. Rab was working late on Saturday night so I told Dj I was going to lay down for a while as I wasn't feeling too well.
Two hours later, around 9pm, I woke up in bed freezing cold with my teeth chattering as though I'd been abandoned in the Antartic, yet burning up to touch.
Dj appeared in my room to 'check' on me and immediately said 'Oh God mummy, what's wrong!' (I didn't realise I looked *that* bad)....told him I had a temperature and needed paracetamol so he went off to bring me those and water. He insisted on staying with me until Rab got home because he was worried that things were all going wrong now. It was at this point I realised that despite being as strong as he can be for me, he's also deeply worried about what is going on and when things are going to happen/change. He snuggled up next to me in bed and after a while my temperature went down a little so I was able to pretend to go back to sleep - he stayed a while longer then quietly left the room...as he left I heard him whisper 'I'll be back to check on you, don't worry'

The next few days were a complete nightmare - the fever was quickly followed by severe vomiting and diarrhoea, joint pains, nausea, the most awful banging headache, a complete and total exhaustion which meant even walking to the bathroom left me needing more sleep...that was mainly what I did for the following few days - sleep. I can honestly say I've not felt this awful for years - in fact I can't even remember when I last felt this awful. Every part of my body hurt, all the extra pounds I'd been trying to accumulate were gone in days, my energy levels fell to minus zero and almost a week later I'm still struggling to get back on top of things.
Today is Friday - 6 days now of feeling crappy, wiped out and weak but yesterday I managed to eat a few mouthfuls of hot food, not much but more than I'd been managing up to then. Today I'll try to make more effort but my appetite is at rock bottom....For the first 48 hours I couldn't even keep water down, so Rab went and got me Lucozade which actually did help. I managed to drink a few bottles of this and keep it down when water just wasn't doing the job at all.

I spoke with my palliative care nurse earlier this week who said she wasn't convinced that this was a reaction to the drug I'd been given. She feels that any reaction would have taken place within 24-48 hours and that gastric reactions to this drug are 'highly unusual although possible'....sigh......I just know this was a reaction to the drug, I know this wasn't a 'winter flu bug' - how do I know? Because I do.

She's since contacted me again today and said she's spoken to a different consultant who again feels that this is possibly not related to the drug as it's 'too unusual for anyone to react so severely, although of course it is possible'........So everyone agrees it IS possible but because it's unusual I should write it off as a 'flu type bug' - and I shouldn't wonder why no-one at home managed to catch this from me? (despite winter flu type bugs being highly contagious)
She then said of course the only way we'll know for sure is if I react this way next time - then we can be confident that it IS the drug and maybe the dosage will need reviewing.

I need to contact my Oncology team at the other hospital as I did some basic research into the drug last night. The reason they are giving me this is to try to increase the bone density and therefore reduce the risk of fractures - it will NOT give me longer, it will not stop the cancer, it is purely to give me some quality of life...
What I found last night was a couple of reports into use of this drug for Osteoporosis (bone thinning) all of these reports stated that ONE dose of this drug at 5mg was shown to still be effective two YEARS later...wait a minute! ONE dose can give up to TWO years protection against thinning bones? Why am I doing four weekly sessions of this then? Oh God! here we go again - more questions for me to find the answers to.....I asked my palliative care nurse about this today and she said it was just the standard dose that they give for cancer mets...but if it's shown to be in the system still after two years, do I really really need this every month?...decisions, decisions............more information needed.

Apart from all that how's the pain? It's still there...better controlled by the morphine based drugs and I can't honestly say that the bisphosphonate has made any real difference as yet.


  1. You're right, if it had been the norovirus DJ and Rab would have it too. Or would they? I look after a 99 year old lady, who over Xmas went to stay with her daughter, son-in-law and grandson. All 3 of the 'younger' generation had the vomiting/diarrhoea norovirus in turn over Xmas. The daughter continued hands on care of her aged mother even though she was sick. But the 99 year old didn't get the virus.

    I only have experience of bisphosphonate when its taken orally once a week by ladies with osteoporosis. I looked up calcium intake when I was told I had osteopenia. I didnt know before then that we only have a tiny amount of calcium in our blood, most of it's in the bones. So when we take it orally (or in your case via IV) in large quantities, it does unpleasant things until it settles into our bones. Most women who take calcium carbonate get an increased heart rate for a short time after taking it. God knows what the bisphosphonate is doing. Taken orally it typically gives people heartburn and digestive and stomach problems.

    I dont think the protection levels against thinning bones you have researched, i.e the lasting 2 years thing, will be the same as when given in your case. As it helps to increase calcium levels in the bones, then I guess yes those increased calcium levels will maintain within the bones for quite a while. But probably not if you just take a single dose every 2 years! Most ladies taking it for osteoporosis take it weekly, pretty much for ever.


    1. Thanks for that info Fiona, am going to actively find out more tomorrow then give my Oncology team a ring on Monday once I can be bothered to lift the phone up...

      I know it 'could' have been a flu type thing (and maybe I'm wrong and that is what I've had) but my inner gut feeling is that this *is* connected to the infusion. However, the only way to know for sure is after the next one I guess.

      Glad things are still going well for you Fiona - hoping it stays that way for a long time, actually, for ever :) xXx

  2. Hey Carole,
    I'm sure glad you're looking out for your health! I wish you didn't have to shoulder the brunt of it. You've got enough on your plate as it is.
    My experience with doctors is that when you have an uncommon reaction to a drug, they rarely want to blame it on the drug. Although, I don't understand why with your history they would be surprised. I'm glad you are starting to turn this last week around and that all of this didn't hit until after your visit with your cancer mates.
    Hang in there, you're to important to too many people!

    1. Thanks Carla for your lovely words and encouragement, as always.

      With my previous experience it's true, that you'd think someone might be able to join up the dots - but I agree that they rarely put the blame onto the drug...time will tell with this. I know one thing, the dosage will need reducing if I continue to react like this or I'm going to lose way too much of my precious time left.

      PS. I saw Steve's book and I'm so impressed - well done to both of you. Hugs and luv always, xxXXxx

  3. and sometimes there's just the crap!

    thinking of you...^&^

    1. and *that* Angel, really does just sum it all up in a sentence :0)

      Thinking of you too - get that 'Good Earth' down yourself and just relax xxXXxx

      Much luv

  4. Oh Carole, I really wish I could say something to make you feel better, i'm pleased you have your lovely Dj to snuggle up next to, he must be so scared, I feel so much for you all,

    I really hope it is just a flu bug, but I understand your doubts,

    Lots of love to you Carole
    Lynn x

  5. Hi Lovely Lynn,

    Yes, I think despite keeping himself pretty much together most of the time, he is scared of what the future holds.

    But, as always, this time he again coped really well and did his best to look after me - bless him.
    He's a little star :)

  6. Wow Carole! I am glad you are finally starting on food again and I do hope they are right that it is just a bug, but shesh! Feel better soon!

    1. Hi Eric,
      Great to hear from you hun....am back on track now. One Thai Red curry later and I'm fixed :)

      Looking forward to hearing more about your plans for the holiday as they develop :)
      Luv to you both xXx

  7. It does sound like a flu bug but why didn't your husband and son get it? I had the virus before Christmas and was almost 2 weeks getting back to normal, same symptoms as you had Carole. You know your body better than anyone so I think you are right to speak with your doctor. No need to be so sick if it isn't necessary, you don't need or want that. Have a great weekend, stay warm and enjoy your lovely family.....:-)Hugs

  8. Hello Bernie,
    I hope that *you* are keeping warm in your sub zero temperatures right now :)
    I'm doing much better now, thank you and yes, enjoying being with my family
    Hugs and love xxXxx

  9. "Well, not literally as I have a bag to keep it all contained remember :)"

    Love it. I'm glad you still have your sense of humor.


    1. I'm hoping that no matter what else this disgusting disease takes from me, I'll still manage to find things to laugh about Doug...if not, *it* wins - and I'm really not prepared to let it take everything from me :)

      I still remember your story about your lovely dog 'finding' your bag - always brings a smile to my face :)