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, 25 June 2011

Sorry seems to be the hardest word...???

Sometimes I find it so easy to put a particular post together - the words come without me even thinking about it too much simply because it's all 'there' in my head and just waiting to be typed out and thrown out into cyber space.....

Other posts I find so much harder - and this is one of them.

Entitled 'Sorry seems to be the hardest word?'....but that's wrong. For me the hardest words are finding how to say 'goodbye' to people who have become good friends, people who've walked the cancer walk with us until they've run out of road ahead.

Thursday, 23rd June our lovely friend Rose passed away. Diagnosed with breast cancer in February 2007 she had suffered numerous chemo's (7 in total I believe), a masectomy, Radiotherapy, Stutent....she suffered hair loss, weight loss, appetite loss, painful hands and feet, extreme tiredness, breathing issues - but never ever lost her love of life.

She was determined to stay around for as long as possible so that she could see her three beautiful grandchildren grow up. Harry, Eleri and Annabel were three major reasons for Rose to keep trying - and she did exactly that.



Rose was an active member of Cancer Chat forum where she would spend hours assuring other people, calming them and finding ways to put their fears to rest - all this despite going through hell herself some days and she never once complained. She was always just grateful for one more day to spend with her lovely family.

Rose found humour when others found despair - one of her classic lines was talking about her appearance after a bout of chemo....'I had hoped to look like Sinead O'Connor but looked more like Matt Lucas from Little Britain'......:-)...
Another comment she made was that she'd gone to the GP surgery and found herself surrounded by ill, coughing and sneezing people. She was worried because she'd been told not to be around 'germs' but found "I couldn't actually hold my breath for 20 full minutes" ......LOL Rose...we will miss you so much.....

So for me, the hardest word is not 'Sorry' it's 'Goodbye'......Rose you were honestly one in a million and I've found it very hard to write this post saying goodbye to you....all I can say in response to your last email to me earlier this week is 'Yes I will, I promise... and luv you back loads too'

Sleep tight dear friend you will be so so missed by so many people...




Sending love & sincere condolences to Rose's family Ricky, Debbie, Christopher and her three beautiful grandchildren....

Friday, 17 June 2011

Scantastic :-)

I got my scan date after my meeting this Monday...the appointment arrived yesterday in the post - 8am Monday, 20th....

That was quick eh - nice one Nursey! :-)

Dj arrived back from Germany tonight...he's had 'the best time ever'. Full of excitement about all the things they've done, mountain walking, water park, phantasia theme park, exploring the local area, meeting Germans, disco (which was 'boring' apparently - but Dj doesn't really 'do' disco's...)

The best news ever for me was that the travel meds we gave him this time really do seem to have worked. He managed to get from the UK at 9pm travelled through the whole night by coach and ferry and arrived in Germany around 11.00am the next morning after driving through France, Belgium and Germany and didn't throw up once.
Now, those of you who've had the pleasure of travelling with Dj in the past will know what a massive achievement this is...normally he can't do more than 15 minutes in a moving vehicle without being ill, repeatedly...So, at last we've found something that works for him - YAY :-)

He organised his bag really well too - I'm impressed that he thought to separate his dirty stuff from his unworn stuff...and I'm pleased to see my little boy is becoming a young man.
He's now gone to bed, totally exhausted and the last thing he asked as I left the room was "Can I put my Xbox on tomorrow?"....
Yep, Dj's home and life is back to normal once again

:-)

Monday, 13 June 2011

Appointment 13th June

As you all know, today was my first check up at the hospital since surgery took place back in November.

Today I met with one of the colorectal nurses and we had a long, useful, constructive chat.

Doctor came in and checked the wound over - said it's being 'slow' to heal but that they do have other patients whose rectal wounds are still unhealed years after surgery...it's a tricky place to heal, especially if there was any Radiotherapy damage caused during the treatment process :-(

Then told the colorectal nurse all about my ever growing list of complaints, intense shoulder pain, achy pain in right side of rib, joint pains on the left hand side of my body, rectal wound that won't heal, general overall tiredness, pressure pain in the original tumour site.

We decided that the next steps need to be blood tests (done today) and CT scan (being organised to take place within the next two weeks).
After that, if the CT scan is clear she will either ring or email me and refer me back to the GP to sort out the joint problems with intensive physiotherapy (these pains 'could' be down to Radiotherapy, if so Physio may or may not help).

If the CT is not clear, she will ring me or email me to go back into clinic to meet with her again to talk about next steps.

She did say that I'd have to be 'very very very unlucky to get any problems with recurrence this early on, it would be much more likely to be a recurrence issue if we were about 2-3 years down the line'....I found myself thinking 'Yeah, and I can think of at least 6 people who've had recurrence issues within a year of initial treatment'

So, it's now down to whether or not I'm 'very very very unlucky or not' really.....

If the CT scan is clear, she's booked me a follow up appointment in October to see how things are going.

Catch up soon x

Wednesday, 8 June 2011

Reflections.........

It's been a funny ol' week really - funny strange not hahaha funny (although there have been some haha moments - thanks Hazel/Christine)

I felt really tired this week again but knew I would have felt tired if I was doing 3 hours a day or 6 hours a day at work - it's an 'overall tired', not caused by working or anything - just a general tiredness that hasn't really left me since the operation...I admit that I've started to get frustrated with it all now.

Felt quite 'down' this week but couldn't put my finger on exactly what it was at the root of it - then tonight realised it's 7 months tomorrow that I had my op, 7 months ago when they told me 'in three months you'll be recovered and feeling well again' (yeah! right!)...

Just for the record, the wound still hasn't fully healed and my shoulder is still bloody agonising. My breathing never did return to normal after the surgery and I swear some days I feel worse than I did before - however, I'm also aware of the fact that had I NOT had the surgery, I'd be on the last few months of my life right now...so it's all about putting it into perspective and weighing it all up I guess.
Whichever way this ends up going, the surgery will have, at least, prolonged my life and given me the chance to, at least, attempt to be free of this cancer...and who knows, maybe they DID get it all..Yes, who knows? Not me yet - which is why sometimes I think it all gets to me and I end up having these 'down' weeks.

It's also one year ago this week that my Chemoradiation started - the most painful part of all this treatment was (for me) the pre-surgery Chemoradiation treatment.
I spent my 50th birthday having Radiotherapy and crying. I'd always said I'd do something special and memorable on my 50th (just didn't think it would be full on cancer treatment - lol)

This year it's my 51st - the plan was to celebrate and make up for 'missing' my 50th but in all honesty I'm too damn tired to even think about celebrating, too worn out to think about anything beyond the current day. And this is why I'm frustrated, I'm supposed to be feeling better each day (?)..I'm supposed to be 'on the mend'(?) so why then do I feel stuck in limbo still?

Part of this is because I've had no contact with anyone from my colorectal team since December - since my stitches were removed they've forgotten all about me (well, that's how it feels anyway).
I have this 'check up' appt on Monday morning - although I have no tests booked at all - I'm not really sure how you check someone post cancer without any tests of any kind?
Suggestions on the back of a stamp I think......

Friday, my actual birthday, I'm meeting up with Lou for a nice lunch. James & Leanne will pop over during the evening and I already have a little pile of cards waiting to be opened - so that's all nice stuff to look forward to.
Dj is off to Germany on Sunday (School Journey for 5 days) and he's really excited about it - maybe Rab & me will manage to get out for an evening (if either of us has the energy):-)

Other news is that I've had my chat with the boss and decided to stick with the 6 hours a day, 3 days a week for this term. We will then review this just before the summer holidays and make a final decision about permanent hours then.
I've been very lucky to have excellent support from my employer's during this - some other people I've had contact with have been treated really badly during their absence from their work whilst having treatment, many people have commented that their employer's have made it as difficult as possible for them in order to try to get them to resign their post.
Mine have been the opposite - they paid me as long as they could and have made it as easy as possible for me to return. I'm very grateful for that level of support....

Still want to win the lottery and give up work completely though :-))

Catch up soon xx