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..

Tuesday, 20 December 2011

Thanks to all those who've messaged me, either via the blog or Facebook or email or text to ask how things are going. I know I've needed to do an update for a while now but haven't been in the right frame of mind - or had enough relief from the pain, to do so.
Tonight I've set myself the task of bringing you all up to date.

Last Monday I met with my Oncologist, Dr L - who is the same Oncologist I had last year for my pre-op chemoradiation. I like him and trust him totally and feel confident with any decisions he makes on my behalf.

He told me he feels really genuinely sorry to be seeing me again and really hoped that the last time he saw me, back in January 2011, would have really been the last time he needed to.
We discussed the spinal mets and he said he's quite taken aback by this development and it was completely unexpected. Told him I agreed completely, it wasn't what I was expecting either!
The current plan is that he has arranged for new CT scans to take place (this Wednesday) on my spine, thoraxic area and also my left hip to check to see what's currently going on. After he's viewed these I'll be meeting with him again in early January to 'discuss developments'. I told him I'm still quite chemo resistant and he's fine with that - but we'll make final decisions in January once we both know exactly what's happening for sure.
He told me that in his opinion chemo could potentially possibly provide me with some extra 'weeks' but it would come at a price. This is all based on my severe reaction back in June 2010...so we're back to that decision about quality vs quantity and I've made it clear that quality is my goal. Extra time being slowly poisoned is still not really negotiable for me at the moment - BUT it will depend on what he says in January when we meet.
We had an open and honest chat and he leaned forward, looked me in the eye and said 'I'm really sorry that I can't fix you Carole, I just can't stop the cancer'..I told him I do know that this is the case and my only real interest is to sort out the pain and see what options are on the table that probably don't involve chemo.

Today I had a follow up appointment for palliative care and pain management. The lovely Dr P has emailed a couple of her colleagues on my behalf and asked about a spinal operation that involves placing a 'cement' type product into the spine to try to mend some of the damage. They will review my bone scans and see what they think. I'll let you know what their opinion is about this once they've got back to me/Dr P.
I discussed today with Dr P what my life expectancy could be now - she said it's so difficult with cancer because things can change literally overnight - however at this stage of things she'd suggest I have "long months and short years". She then said to be blunt in the region of between 9-18 months would be a good estimate at this stage.
I want to be around for Dj's 13th birthday, if possible, so that gives me hope that that might be achievable (if things don't change overnight) :)

The pain has been a pain....not much more to say about that. Still tweaking the med's around to see if we can find a balance that works for me. Next appointment in mid January.

I'm meeting with Dr L, Oncologist again on 3rd January - then have a colorectal appointment on 4th January.

For now, everything is going on the back burner because it's almost Christmas and I intend to have a lovely time with my family - enjoy the festivities and make any decisions after the holidays.

Many people are in my thoughts at this time of year - especially my special friends Rose and David, whose families will be spending their first Christmas without them.
Also special thoughts going out to my lovely friend Kev over in Western Australia who will be facing his first Christmas without his wonderful wife, Joan.

Catch up soon xXx

Saturday, 3 December 2011

A frustrating week all round........

I'm now two weeks on from the end of my palliative Radiotherapy. I think you'll remember that I told you that the best case scenario would be that 7-10 days on I'd be 'pain free' .....well, 14 days on I'm on middle ground.
The pain 'has' diminished slightly (and I do mean 'slightly').. at times but I still can't function without pain relief every 6 hrs. Yesterday was probably one of the best days so far and I felt quite optimistic that the Radio had kicked in, done it's job and killed the bastard tumour off to a point where it was no longer going to give me constant, persistent pain - but today I've been back on normal dose pain killers once again. Bollocks!
Over the past 10 days I've also developed a pain in my left hip that feels very very similar to the pain in my spine - double bollocks!

But being realistic, I guess I just have to be happy that I can cope with the pain and it might still reduce a little over the next week or so - hopefully.

Apart from that, lots has happened.
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.

Also had a follow up appointment with the BC team on Wednesday. Felt really optimistic about this as they have been so so helpful to me since my nice colorectal nurse, L, referred me to them for support with the spinal mets. Sarah came with me for the appointment and I was so glad that she did because this time things really didn't go to plan.
Saw a different Doctor who was like an ice-maiden, cold, frosty and repetitive. She started our conversation by asking if I'd completed my Radiotherapy then said 'I don't know why you're here.....you don't have breast cancer'!
I was a little knocked off balance by this (because I KNOW I don't have breast cancer and so did the BC team) so replied that yes she was correct, however because of the spinal mets, my colorectal nurses had asked Mr R to look into my case and he'd said he wanted to take over my care for the mets - despite me not having BC.
She sat there stony faced and said 'Yes, but you don't have breast cancer and I don't know why you're here...why are you here today?'....
Told her she's the Doctor and she should know why they'd asked me to come back today...and then I started to cry because I could see that this was the time I was going to be told to clear off.
She then told me she'd met with Mr R that morning and he'd said he didn't want to see me in his department again.
More stuff was said - mainly by Sarah as I couldn't get my head together enough at this point to have a rational conversation and then we left, me still crying and Sarah furious (although she stayed completely polite and calm in the face of Ice-Maiden).
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.
Then in the afternoon developed a really bad stomach upset which has lasted until today. Just about sorted it out now by eating only light meals and sticking to simple things like toast for a few days.

Thursday I received a letter from the Oncology dept at G hospital offering me an appointment BUT I'd said during the meeting with Ice-Maiden that I didn't want to go to 'that' hospital, I'd clearly said I wanted to go back to my original Oncology team at StT as I knew them, knew the way the dept worked and had got to know the staff there. She agreed at the time - then referred me to the one I'd specifically said I didn't want to go to. Cried some more - out of frustration really (and the cramps from the upset stomach didn't exactly help).

I'd also recently cancelled my out patients appointment on Mon, 28th Nov with the colorectal team because I'm having a staging CT scan on 19th Dec and it didn't make sense to meet with them before this took place. So I contacted the appointments dept and asked for a new appointment to take place after the scan on the 19th Dec....received that through the post on Friday  - new date 28th MAY 2012! FFS......cried some more, again out of frustration more than anything.
Sat there thinking, been dismissed from one team, the other doesn't want to see me for 6 months, can't go where I want for Oncology, still got spinal pain, now developed hip pain and just felt that no-one gave a shit about me anymore :(

Then Friday afternoon received a telephone call from the lovely nurse at Beating Bowel Cancer (an amazing charity organisation). Spoke to the lovely Nurse L, who listened to all my moans and groans and gave me some really constructive advice and got me back on track with my next steps.
**see my note at the bottom of the page for other info about Beating Bowel Cancer............

Then later on Friday afternoon I got a telephone call from my nice colorectal nurse, L, who said she was a bit confused about a few things. She had thought that I had asked NOT to be seen any more by my original colorectal team as I was unhappy with my care. I informed her that was not the case at all, what I had said was that I was happy to stay with the BC team for the spinal mets as they have more experience in this particular area but I had not said I wanted to go elsewhere when dealing with the original colorectal issues, such as the ongoing lung questions etc.
We had a frank chat and I explained how frustrated I was feeling with everything that was going on around me at the moment. I did clarify that I wasn't unhappy with the care that she (L) and her colleague S (both colorectal nurses) had given me BUT I felt that the delay in referring me for a bone scan was wrong and that I'd felt at the time (back in June) that the surgeon should have taken me more seriously when I asked about the bone pain and told him I felt it could have been cancer related. I said I felt I should have been referred for a bone scan at that point, not sent away to see my GP about this.
She assured me that both she and S are on-board with me, willing to do the whole journey with me and will do whatever they both can to simplify things as much as possible.
She is now going to try to reorganise my Oncology appointment, get me seen again in the BC team (by a NICE doctor - not the Ice-Maiden) and also rearrange my 28th May appt to take place shortly after my latest scan in December. So all in all a constructive chat.

It's been a crap week to be honest - but I'm okay again now :)

** As mentioned above, I've recently had some great support from the lovely nurses at Beating Bowel Cancer. They are a charity organisation who assist anyone diagnosed with bowel/colon/rectal cancer including relatives etc..
My friend Alison's husband, Bob, is currently fundraising for this great charity. He's asking for sponsorship to grow his beard and all cash donated goes straight into the 'Beating Bowel Cancer' pot.
Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever. 
So, if you'd like to sponsor Bob to turn into a hairy man just in time for Christmas the link to his page is here....

Much luv and catch up soon xxXxx