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, 12 June 2010

1st Week of Treatment......

Hi all,
I've not updated my blog since last Friday simply because I was too tired each day after getting back from various appointments, and some days I was just too uncomfortable to sit at the PC for any length of time.

So, here's where I'm up to now.....Monday went off to the first Radiotherapy appointment (1.10pm) at St Thomas'. Rab came along with me which was nice, I'd already decided to go on my own but he said he wanted to come and had taken the day off work so I gave in :-) Lots of sitting around and waiting then more chatting about the treatment, side effects etc then finally the first treatment takes place.

After that have to sit and wait in a different area to collect Chemotherapy medication - by 4pm both of us were getting hungry, grumpy and tired. Finally got seen around 4.30pm - more chatting about the side effects and then eventually off to another room to be issued with the Chemotherapy medication - 70 doses (140 tablets) over 35 days of toxic poison....lovely :-)
More booklets to read, warning signs to look out for, a special card to carry in your purse which warns health staff that you are toxic (only joking, it's to warn them that you are on Chemo in-case you collapse somewhere during your treatment period).

So eventually we get out of the hospital at 5pm and home just before 6pm. Tired, hungry and irritated that it's all taken so long.

Tuesday........should be quicker I think before going ...hmmm - not really. After 2nd Radiotherapy appointment they tell me 'You HAVE to see Clinical Radiotherapy staff every Tuesday to review your treatment'....I remind them it only started yesterday and to be honest nothing has changed overnight! However I 'have' to see them so more waiting around, more chatting, more discussing side effects and when to contact hospitals/medical staff/999 etc....finally escape around 4.30 and arrive home just before 5.30pm - again tired, hungry and irritated that it's all taking up so much time at the moment.

Wednesday - MUST be quicker today eh....Well it probably would have been except I wasn't feeling well at all. Had a dodgy pain, odd rash and some small sores appear around the site that Radiotherapy is concentrating on at the moment. Spoke briefly with the Radiographers who decided they weren't happy with it - however we proceeded with 3rd treatment and then I had to wait to see Clinical Radiotherapy staff again. Actually wasn't so bothered by this today as was feeling quite unwell anyway and it made sense to see someone before leaving.
Saw Cathy, Radiotherapy nurse who confirmed that she also 'Wasn't happy with this at all' and decided to call down the Registrar from Guys hospital to have a look and decide what to do.

Senior Registrar arrives about an hour later on the bus from Guys :-) She's lovely and explains that in some rare cases (*sigh*) Chemo combined with Radiotherapy can activate the Shingles/herpes zoster virus and this is what they think has happened. So I'm thinking 'Oh ok, that's not so bad then?'.......WRONG!

It's so bad they've stopped my Chemo treatment and it will have to be reviewed next week. Apparently it's too risky to take Chemo with this virus because it can cause a type of blood poisoning and organ failure - so Chemo has been stopped, for now.
I'm now on a different type of drug (anti-virals) to try to get the virus back under control but she has already warned me that if this doesn't happen rapidly then the Chemo is not an option any more.
Pass me that brick wall so I can just smash my head into it at full speed please.....GRRRRRRR!

It feels like every time I get my head around doing something, it then bloody changes and I'm taking one step forward to two steps back all the time.
I didn't want the Chemo in the first place but they insisted it was essential to reduce the size of the tumour and to mop up any loose cells that may be heading to new resting places (mainly they are concerned about the liver/lungs next)....So, I eventually decide they're right and I have to take this blasted toxic stuff that will gradually poison me over the course of 35 days - in order to give myself maximum chance of recovery - THEN 'Sorry, you can't have it'.....Arrgghhhhh !!!

Thursday and Friday were both much quicker appointments. Both days the Radio was booked for around 11.30am and I was back home by 1.30pm.

And so ends the first week of treatment :-)
Will update next week as things develop.


  1. Carole,

    Bloody hell....

    This is a total pain..I can say the radiotherapy takes about a week to get into a routine and should take only about 10-15 minutes in the hospital. I remember the Tuesday meetings with my oncologist and they also take a few minutes unless there is something to discuss or you go armed with a pile of questions. I seemed to have loads of questions each week but think that was mainly due to my chemo being also cancelled as too dangerous due to the side effect of capecetabine...they called it a vasospasm of the heart which means an angina attack in normal terms. They couldn't try another chemo drug as they are all related in some form to fluorouracil. Apparently this wonder drug called chemo is not so cool after all ay!? The drug flurouracil is apparently the only drug that has been developed in the last 20 years although there are derivatives of it. Therefore if I had any of the bowel cancer chemo it could kill me...go figure!

    That coupled with the fact that the odds of it returning after having chemo is only reduced by about an extra 10%...to be honest it is worth the pain and hassle for the 10% and quite a surprise that it is not more.

    Sorry - I started this as a means to try and cheer you up :-)

    I have had a look for some details and it says it is rare also that it is usually at the later stages of chemo so you are very special!

    Also on the cancer research site there is a small amount of detail on the drugs used to treat although I am sure you already know this stuff...


    You have my mail if you need a whinge, I will also drop my home number down on the email later in case you are desperate for a chat.

    Believe me it will get better although unfortunately not for a while :-( There I go again cheering you up.



  2. Yep, that's the ones Tony Capecitabine (Xeloda) 500mg tablets....

    Since stopping the Chemo tabs on Wednesday I've now noticed a tightening in my chest area on the left side - I can't call it 'chest pains' more just a sort of feeling of tightness there - sort of under the armpit and down the rib area.
    I don't know if it's just in my head now though, maybe I'm imagining pains that aren't really there?...(like I haven't got enough 'real' pains to cope with, without inventing some new ones eh)....

    But I suspect that I won't find myself back on these tablets next week and to be honest, I'm not sure that I want to be back on them anyway.

    Oh, and you did cheer me up btw :-))

  3. I would take every chance I could get, I wasn't very clear that although it only gives you an extra 10% it is worth taking every chance possible...if they asked me whether I wanted it tomorrow I would jump at it...I felt quite aggrieved that I could not have it at the time although after a second opinion and various other discussions I have learned to live with it - well for now anyway...

    Mention that pain as you never know ay!?



  4. Hi sis, We're really sorry to hear this. Its like one thing after another, no wonder you are soo pi**ed off!

    I've sent you a book that gives information on foods to eat and avoid to help the fight of cancer spreading. I hope its useful. Assume you've probably heard many other peoples stories, but my friend that recommended this book said that after her cousin changed the way he lived and ate, he didn't actually need to have the Chemo. Again don't know what stage it was but any information to help fight naturally could help.

    PS, Tony, You're an inspiration and once I get my internet connection up and running, I'd like to follow your blog and give you my support. Good luck with your fight. Sarah (Carole's sister)

  5. Thanks Sis, looking forward to receiving it and having a good read.
    You know me, I love healthy food anyway, would always choose veggies over meat etc so anything that reinforces that can only be good ...

    Yes, Tony IS a huge inspiration and he's helped me so much despite his own ongoing battles. Mum's been reading his blog for a while now and she's found it's helped her to understand things as they develop.

  6. Hi Carole and Sarah,

    Thanks for the comments - you are making me blush :-)

    I am a great believer of diet and as I couldn't have the chemo have embarked on a strict regime of flaxseeds on my cereal, green juice in the blender (spinach,apples,lemon and ginger), superfood (seaweed/algae based so looks, smells and tastes like fish food) and wheatgrass among other things like multivitamins etc - to be honest even if I couldn't have the chemo I would have gone for this as seriously needed to change my eating habits.

    This sort of stuff also doesn't interfere with other drugs we might take although causes Stanley the stoma to get a bit carried away sometimes...

    Absolutely not touching those expensive 'wonder' natural drugs as a lot are just schemes and have no benefit...what I am doing is just cleaning my cells...I am under the guidance of a NHS Doctor who has a sideline of holistic stuff drkatejames.com.

    Hope you are getting on okay

    T x

  7. Now, this is VERY interesting Tony (Flaxseeds bit) and I will explain properly later on this evening in my new post....but right now, need to eat and relax for a bit...(and watch North Korea maybe beat Brazil !!!) :-)