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

Bloods, Drugs and 'no Side Effects'.......

Me again :) I'm BACK just as I said I would be - lol......

So to recap on the last 10 days or so..

Monday, 9th - went down the the local hospital to get bloods done prior to the infusion of bisphosphonates the following day. They need to do your bloods first as they must check things like your calcium levels, kidney function and make sure that the white cells are behaving themselves beforehand.
Arrived just before 11am and found the LONGEST queue ever in the bloods department. So, I pulled the cancer card (something I never usually even think about doing).
First I asked the (bored looking) woman on reception roughly how long the wait was for bloods....she replied at least 1.5hrs probably 2hrs. I then quietly asked if there was any way for me to be fast tracked for two reasons, firstly because the cancer is in my spine and I find it really hard to sit in one position for that long - and secondly because I had a Palliative care nurse visiting me at home from Macmillan today and I really didn't want to miss her or waste her time, so could she ask if it would be possible to see me as quickly as possible?
Her reply was firstly to look at her fingernails in deep thought followed by a long sigh and then.....No.....

That was it...just 'No'.....I looked at Rab, he looked at me and we just shook our heads, walked away and sat and waited - in total for 1 hr and 58minutes. By the time I was seen I was irritable and in pain from sitting upright in one position on a hard plastic chair for so long. The bloods lady greets us with 'Hello, are you well?'.....I bit my tongue and said 'Not really, I'm in a lot of pain, the wait was ridiculous and I'd think you 'could' maybe make special arrangements for people who are really genuinely in pain' She just smiled and said nothing.
It just makes you feel so so cared for in this place!

Managed to catch my Palliative care nurse just as we arrived home, she was about to drive off having waited for just over half an hour for me. Apologised and explained and she agreed that it should be possible to help people in genuine need of assistance.

Anyway, her name is C, she's lovely and she'll be my guide on pain management now until the end.
She has wiped the slate clean with my original meds and we're doing a new regime which includes more morphine than before, but slow release so I only have to take it 12 hourly. I will still be using the Dicolfenac for the bone pain, plus paracetamol 6 hourly - paracetamol actually helps the Diclofenac work more efficiently apparently - don't say you learn nothing by reading my blog :-)) On top of that I still have my Oramorph in place (liquid morphine) for breakthrough pain which I can use 2 hourly if necessary.
I think the new med's help more than the co-codamol were doing but at the moment I'm on the lowest possible dose to see if I can manage there. If not, it will be increased gradually until we find the right dosage that removes most of the persistent pain. Morphine of course is highly addictive - this hardly matters in the scheme of things going on with me though.

We had a long chat about everything, end of life care plan, funeral arrangements, the boys (I cried...I ALWAYS bloody cry when someone wants to talk about the boys)  Rab (cried some more) and just general stuff like who's who in my family and how everyone around me is coping, do we need any practical help etc. I bonded with her and she's really kind so I know she'll be doing her best for me.
She's also going to organise some complimentary therapies for me at Trinity Hospice shortly....remember my link if you've not donated and have a spare couple of quid knocking around :)

So, that was Monday.

Tuesday, 10th  in the afternoon I was due to have my first infusion of bisphosphonates. I mistakenly thought I'd be getting some time with a Doctor beforehand to: discuss any concerns I had; make sure my bloods had been checked; ask any questions that I'd thought of; warn me of any side effects to watch for, that sort of thing......but no, it was a case of sit in the chair, nice nurse comes over and jabs a cannula into your arm, checks your date of birth, take two vials of blood first,  then starts the infusion.
I'm sure she said something about my bloods being used for checking next time...and I didn't say anything but thought, not likely. I know my bloods need to be done AFTER the infusion, not beforehand. I know they need to be checked 24-48hrs before each infusion - there is no way they're going to use 'old' blood - surely?....Anyway, not a problem because I'll be dealing with that nearer the time.

During this first infusion I asked her 'What are the side effects of this drug?'....she replied 'None'.
Hmmm, that's definitely NOT what the manufacturers website says  - so, me being me, asked some more questions. 'Are you sure, all drugs have side effects don't they?'.....She then said 'Usually you don't have side effects with this drug' - I then told her I'm NOT usual, I was removed from Chemo after just two days due to toxicity problems....she smiled and said 'You'll be fine, nothing to worry about' and wandered off. That's good then.......I'll be fine and I don't need to be informed of anything to watch out for!

Sarah was with me and we sat there for a while just chatting and finding things to laugh about, quietly because no-one in there makes any noise at all - it's quieter than a library building! Drip, drip, drip infusion all done after about half an hour - followed by a quick flush through (sterile water) and then we were free to leave after making the appointment for the next one in four weeks time...but no appointment for a prior blood test?
Hmmm, I'll be doing something about this nearer the time but it never ceases to amaze me how much I've had to educate myself on my treatments, how much I have to check and double check, how many times I have to chase things up that need doing. It's all getting a bit (lot) irritating now.

Tuesday evening I still had a strange taste in my mouth, but nothing untoward was happening.

I did increase my pain meds Tuesday night as the pain did feel slightly more intense than earlier - but I'd been out doing things, walking around, sitting around, being jabbed.... so that was probably the cause rather than any 'immediate' side effects :)

Going to break the rest of what's been happening down into other posts - or this one will end up just too long

Here's a couple of pictures that Sarah took whilst we were in the unit.....


  1. Grrrr annoyed at your treatment re the bloods Carole, at Tommies they have an electronic box with buttons one of them says having chemo or radiotherapy so i duely pressed that one and sat down. My number was number 8 the number on the screen was 387, i heard a woman complaining 'why is that no 7 and they go in and then it is 387, how come they get in early' no 8 comes up and i very sheepishly looking the picture of health walk into one of the cubicles and hide whilst they take my blood.
    It is easy to take no for an answer than stand your ground but you shouldn't have to and the hospital i think need to look at their system, it is obviously possible to take into account individual circumstance.
    Lovely to see your pic, even though the environment wasn't so lovely.
    Goodd luck and i am enjoying keeping up with you via your blog.Hazel

    1. Hi Hazel :)
      I had bloods done at Tommie's a few times and that is one of the reasons I was so p*ssed off at the system at this other hospital.
      Like you said, press the button get priority. Simples eh and why not, we're struggling enough at times without extra hassles.

      One patient did comment about me being seen faster - glared at me when I came out and said loudly 'SHE was only here 10 minutes, I'VE been waiting 30 minutes now'.....
      I *could* have ignored it but I replied 'Yes, but SHE, as in me, has cancer..do you really object to me having my bloods done faster so that I can go do my Radiotherapy in peace'?
      She was mortified and apologised immediately...

      I'm going to put something on the hospital comment card about the wait time in the bloods dept..it's always the same so I'm going to suggest they review their 'urgent' system.
      Might as well carry on being a nuisance for as long as I can eh - lol :)

  2. I have to admit you look really good Carole. It is true, we have to do so much research if we want to know what is happening to our bodies either with our disease or the treatment. Doesn't seem fair but if we want to know the facts it is something we must do. Take care, stay as well as you can and know you have a friend in Canada who keeps you in her thoughts regularly......:-)Hugs

  3. Thank you Bernie - lovely words as always

    Hugs back - keep warm lovely lady, it's freezing cold over there right now isn't it!

  4. No side effects? I've never heard of a drug w/ no side effects. Being told nonsense like that would provoke me. You do look beautiful, and I liked that glimpse of the spunky Carole.

  5. Hi Debby,

    You're right, it does make me mad...I can face things when I'm prepared - telling someone 'no side effects' isn't helpful at all!

    Thank you for the lovely comment Debby xxXXxx

  6. Hi Carole its Lizzy (Sharons daughter)your blog is so wel wow, i cried, and then smiled at the way you handled your treatment and questioning of meds etc, this blog is truely inspirational and im sure will help many other that may be on the same path as you, must say you are looking really well, sendin all my love, and you are in my thoughts, lizzy xxxxxxxxxxxxx