Saturday, 19 January 2008

2007 June 9th

Monday, July 09, 2007

Cancer Blues - to Chemo or Not to Chemo?
Current mood: depressed
Category: Life

Well I'm still not getting my full 7 to 8 hours sleep every night, but I've had one whole 6-7 hours and mostly I can get 4 solid hours before I wake up. Therefore still very tired!

I had to set an alarm (urgh, that's what healthy working people do isn't it?) on Sunday so I could go with mum and Bex to support them doing the Race for Life in Boston. It was a lovely day, weather wise and I got a pink nose and right arm (I had to take emergency bag change kit, extra fluids to prevent dehydration so I forgot the sunblock!). I was also more knackered than anyone who actually did the race, just from standing and walking - I had to sit down a LOT because my pouch just throbs after any reasonable amount of being upright.

I felt teary as soon as we pulled into the car park, memories of running myself last year for June who lost her fight a year before I was diagnosed. I remembered trying not to cry at all the signs on people's backs the entire 5K. It was pretty surreal knowing my mum and and sister would be wearing pictures of me on their backs.

Part of me doesn't feel any different, but I am. I'm never gonig to be the same again - I've got organs missing for a start! People don't generally have their insides removed, fiddled with and chopped about and shoved back in again - sometimes I look at my belly and wonder how the hell I'm still walking around. I find it even harder to associate the quiet man in his office with life saving surgery and being on an operating table for 5 hours.

Anyway I was David Bailey for the day and took photos, having sit down on a blanket breaks to rest my bottom. I've actually just seen the three of us on Calendar news lazing on the blanket with me taking a photo of us, how funny. Wish they'd spoken to me, I'd have flashed my scar and bag - get that viewers!!

I went to see Dr Tom today (the oncologist) in the chemo suite - Hylda seemed to recognise me, which was nice - I told her I'd be back in the summer.

Here's the thing - apparently it was just the one node tumour left (Butthead then, Beavis must have kicked the bucket on chemoradiation mwah hahaha) not two, not that it changes anything - I'm still Stage 3b. He said they couldn't find any trace of cancer in the blood vessels either which IS good news and confirmed again that Mr A, surgeon, got a really good margin around Tyson. So, what happens next?

Well they don't KNOW if there is any benefit to having chemo after surgery if you've had chemoradiation before surgery. Therefore they're offering people in my situation a trial now to try and find out. I've read that about 20% of people will get a recurrence later if they don't have chemo but that means 80% of people would be getting toxic chemicals which have nasty side effects for no reason. So I can opt in the trial - may get chemo, may not. Or I can say no I don't want chemo or I can say yes I do want it.

Great! So it's all down to me then. If I say no to chemo or get no chemo on the trial - what happens if I get a liver or lung tumour in a couple of years - everyone, including me, will think "you should have had the chemo when you had the chance" instead of facing more surgery and more chemo and another year out of my life at least. What will it do to my family if that happens? I'm sick of this already and yes, I'd cope if I had to go through more, but I feel I owe it to everyone else to take everything on offer. I just would have preferred it if Dr Tom had just said, "here, lets fit another PICC line and make sure this is gone for good."

He also said, again, that I should have HRT because of the risk of osteoporosis (that thing where your bones crumble and break at the first puff of a strong wind) which I don't want, I can't really explain why, I just don't want it, more drugs, more side effects, they're not MY hormones being put back into my body - they're from horses wee or something (well Premarin does, they give the pregnant horses less water so they get better quality urine!). I'm still preferring food method of combating symptoms. We'll see.

So - another PICC line fitted on Monday 11.30 and chemo pumps are usually connected on Tuesdays - disconnected on Thursdays then back for a weekly flush the next week. One two week cycle X 12 = 24 weeks so should be having the last one the first week in January. That's assuming that unlike everyone else I seem to know I don't have delays through blood results. And reversal to put PTW back together again and shove him back in my belly where he belongs around March/April.

I've been in a foul mood since this morning's appointment, I'm severely pissed off at having the chance of getting my life back in four months (another 2 months recovery, reversal, 2 months recovery) dangled in front of me but having to be "sensible" about it and take the hard option. Believe me taking large quantities of poison is NOT an easy option, it's crap, it kills cells off that you need along with any cancer cells that may or may not be there. It kills of nerves in your hands and feet (well the drugs I'm getting do) and your mouth and yes some of your hair falls out, but very unlikely all of it. Nails get manky too. All good fun. Sore hands and feet, nettle sting/pins & needles in hands and feet. Watch this space, I feel a chemodiary coming on!

I'm fed up with cancer, I wish it would just piss off. It's been a beautiful warm, wind free day and I spent most of it in bed sulking and feeling crap. I feel sick and I want to cry, a lot, but I can't be bothered because that means more pints of water to compensate and not make my headache worse.

18:28 - 5 Comments - 0 Kudos - Add Comment - Edit - Remove


Awh baby, don't know what to say to make you feel better, except you are doing so well and you've been so brave. Don't give up now, just think this time next year you will be sitting out in your beautiful garden, chemo free and reversal done, enjoying the lovely weather.
Wish I'd realised you were going to be there on Sunday morn, I'd have tried to find you and say hello!
Luv ya x x x

Posted by Hannah on Monday, July 09, 2007 at 20:14
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Thought this link might help with chemo stuff:

Had a similar dilemma to you because my chemo was adjuvant (i.e. no known cancer in my bod when chemo started) but like you I didn't want want to kick myself if it came back. They have consistently found that chemo reduces risk of recurrence..the figures I was given were:

Risk of recurrence at Dukes B (stage2) - 20 to 40%
Benefit of adjuvant chemo - + 5%

So at best, (and having had chemo) I have an 85% chance of staying NED and at worst, 65%. The studies all end up around the same figures (i.e. more likely than not that it won't come back) but you can never tell whether you're going to be at the top end or the bottom end!! The point is, they're just numbers and it all depends on the person...

I went through a similar process because 5% doesn't seem much benefit for 6 such unpleasant months! I decided it was worth it...but everyone is different. We are all here for you!! And don't assume you are going to get ALL side blood may have been crap, but I didn't get peripheral neuropathy very badly, only lost a bit of hair, and my nails are fine!

If I said "FLANGE!!" in a silly voice, would it make you smile a little bit?!


Posted by GlitterGirl.... on Monday, July 09, 2007 at 21:15
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Oh Lisa Babes - its hard to know what to say - what your feeling is normal especially after such major surgery. You are doing really well and so brave too. I'm still not sure right up to this day whether i had to have chemo or was given a choice one way or another - all that is a bit of a blur now! As you know I only managed to get through 9 sessions and didn't complete - so have been kicking myself this last few days thinking that I should have stuck with it! I'm glad I went through the 9 I've had tho despite how I've felt with the side effects and everything else! Just feel that it will give me a better chance!

About HRT - I've been on this for some years due to a total hystorectomy and its a natural one based on mare's urine! Out of all the HRT drugs on the market - these natural ones are better for you - yes - still a drug! I've never had any problems with the Oestrogel - its gel based so goes straight into the blood stream without the digestive system having to break down tablets! Please don't rule it out if they feel you would benefit from it! Think about it sweetie.

We're all fed up with this horrid cancer and what its doing to our lives - but hang in there Lisa - tomorrow is another day. Hope that your be feeling a lot better very soon.

Posted by Caroline on Monday, July 09, 2007 at 21:53
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Paul with passion

Well Lisa I stumbled across your site by mistake but glad I did. Well you and other sufferers know what you are going through, the rest of us have to just sit back and admire!?

Anyway there is nothing I can say apart from what was the jam and toast like? ;o)


Posted by Paul with passion on Saturday, July 14, 2007 at 22:48
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Lisa Left Eye Loopylalalalala

The jam and toast didn't touch the was yummy! Poor surgeon had to wait for me to wipe my buttery fingers to shake hands!

Posted by Lisa Left Eye Loopylalalalala on Sunday, July 15, 2007 at 19:53

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