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
About Me
- Carole
- 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..
Thinking positive thoughts Carole!
ReplyDeleteEric
Hi Carole,
ReplyDeleteReally pleased that you seem to be getting somewhere now...bummer about the slowness of the healing wound, so wish you luck with that. I think that we know that luck has a lot to do with cancer and the treatment, which doesn't seem fair, especially as the treatment is almost as risky as the cancer itself. The joint issue is interesting...I have joint issues and I thought that it was just me getting older! Lol! I will ask about that when I am next at the Onc.
You are doing so well after enduring so much! Your blog and comments have been an inspiration to me and so very helpful and supportive. Wishing you all that you wish for yourself... Hugs x. Carol
Sounds like a plan and a way forward, albeit still full of uncertainties etc. You need to try very hard to get your head around it all, not worry about things that haven't happened etc...all the advice you've given so many others....but easier said than done when you are still left without answers. Doubt always makes the mind wander off into an awful place. By all means let it visit these places, but try not to linger too long there. You still have every reason to believe that you are absolutely ok, so please allow yourself to quietly shut the door on it sometimes.
ReplyDeleteThinking of you Carole, sending you big hugs
xx
Sounds like a bit of a plan at least....I know you and I talk about reoccurence a bit however I like Shents' point about shutting the door on it sometimes. Even being one of the very, very, very unlucky ones I need to forget it is there at times and have a normal time....when I get my bum sorted I will be popping out for lunch with Fran etc and may even go shopping :-)... I am glad they have a list of things to work through so lets hope they don't hang about too much :-)
ReplyDeleteMuch Love dear friend
T xx
Dear Carole,
ReplyDeleteSteve and I were so happy to learn that you are finally going to get some follow-up tests done. Hopefully you will also get some answers to the many concerns you've been carrying these last many months. We hope you had a terrific birthday. Steve is currently in surgery to hook him back up. We'll see how that goes.
Best Wishes... Steve and Carla
Hi Carole. Which blood tests? And hope you get paper copies of the results, whatever they may be.
ReplyDeleteWhich part(s) of you are they going to CT? Seems like you could do with lots of body bits being screened!
Not sure that physio is necessarily the best place to start until you have a definite diagnosis of what is causing the pain. I wasted loadsa time and money on physio/osteopath/chiropractor on aches and pains that turned out to be linked to organs, not muscles and joints.
Hope your birthday was ok.
Hugs, Fiona ((0))
Hi Fiona :-)
ReplyDeleteCEA Levels, FBC, Renal functions, Liver function (thanks for that tip)and CT scan from neck to pelvic area.
They will look at the shoulder joint area on the CT to see if there's any obvious reason for the continual pain there...if it's all clear then she suggested that physio will be the route to take - although it may or may not help IF the problem is radiotherapy related.
Rest of the CT is to look at liver/kidney area and also the original tumour site to see what this pressure pain is about - suggested it could well be scar tissue but she still said it needs checking regardless.
I did feel as though I made some progress this time...:-)
My birthday was okay, thanks. No overly exciting, but okay..... maybe next year eh :-)
xx
Hi Eric,
ReplyDeleteThanks for the thoughts - so appreciated xx
Carol,
The treatment is indeed as bad as anything else - however we are left with limited choice and therefore have to weigh up the after effects vs the effects if we do not do the sometimes destructive treatment.
Talk about stuck between a rock and a hard place eh :-)
*You* are really inspirational Carol, you have so much to feel sorry for yourself for, yet you remain so upbeat and happy.
Be interested to hear what your Onc has to say about your joint pains....
Hugs xxxx
Hey Shents :-)
ReplyDeleteSorry if it sounds all doom and gloom...it's really not like that. I just need this scan to find the right direction to walk in...
The nurse I met with Monday said that had I done the adjuvant chemo, I would have been scanned afterwards - personally I think it left a 'gap' in my care plan because I bucked the trend...but it's all sorted now and I'm back on track.
I think if I'd started feeling well by now it would be a lot easier to shut the door on any lingering doubts, but the difficulty has been in telling myself they DID get it all - whilst feeling gradually worse, weekly.
Maybe the Radiotherapy did do way more damage than they hoped - maybe I'm stuck with joint pain - but I'll settle for that, if they tell me NED on the scans :-)
But don't think I'm sitting here continually worrying about it all - I'm far too busy for that what with working, shopping, cooking, cleaning, ironing, washing and gardening - LOL xxxx
Hi Tony,
ReplyDeleteLunch with Fran sounds lovely once you're fixed up a bit - shopping is boring, that's what the internet is for LOL...go to the cinema or something instead and shop online.
Big hugs and much luv xxxx
PS Tony.....sugar puffs & crunchy nut ;-)))
Hi Carla,
ReplyDeleteI've been over to Steve's blog to check up on him....send him lots of love from us.
Hope they give him some decent pain meds - as he's not having an epidural this time.
xxxx
Carole - please don't say sorry. I know its not all doom and gloom and dwelling on doubts. I just hate to think that you're having such a bad time and I'm frustrated that I can't help you more than just tapping stuff on a keyboard.
ReplyDeleteGlad you're back on track with the care you deserve.
xxx
PS. Hope DJ enjoyed his trip!
Hiya .. well it sounds like your nurse has a lot of power ... able to fix a CT scan ...
ReplyDeleteYou just keep on taking it easy, you know, if nothing else your body is telling you that much!
Hi Carole
ReplyDeleteThat list of tests etc sounds like are covering all possibilities. Glad to hear they are scanning what sounds like everything except your head, lol!
The blood tests are good all rounders too.
All in all I think you have done great to get these agreed to last.
"I'm far too busy for that what with working, shopping, cooking, cleaning, ironing, washing and gardening" - weelll, is this the answer to why you are feeling so rough?? I make sure I have one, what I call, duvet day a week. When I lie in bed till late morning, preferably with cuppa tea brought to me, then stay put in the house resting, reading, watching a film, etc.
Hugs ((0))
Hi Suze,
ReplyDeleteGreat that you found me :-)
My nurse is a force to be reckoned with...and true to her word I got my appt through today - for Monday @ 8am. Cool :-)
I will try to put my feet up a little more, sometimes I forget what I've put my poor ol' body through only 7 months ago.
Fiona, you're also right in that it could be that I'm pushing myself a bit too hard at times.
However I have to admit that on my days off *like today* I didn't surface from bed until 11am then literally just pottered about all day doing nothing much constructive...and I have no intention of getting up much before 11am tomorrow either :-)
Funny that you said they're scanning everything except my head - THAT'S probably where the problem lies - LOL :-)))
Shents,
ReplyDeleteYou do help me, just by tapping on that keyboard - always ((hugs))
As for Dj - little sod, hasn't even sent us a one line text message.
Must be having fun then eh :-)