Last year I started this blog - in April.
Easter was earlier last year - I know this because I was laying on the sofa for days wishing the GP's would open before Tuesday, 6th April because I was in so much pain and felt so totally crap. Easter was Friday 2nd to Monday, 5th April 2010
6th April was when a GP finally listened to me, stopped telling me I was simply depressed and got around to listening to all the vague symptoms I'd experienced over the previous few weeks/months.
6th April was the day when I left the GP surgery and absolutely knew (despite the GP's reassurances) there was something to worry about.
14th April was my first appointment at the hospital, my first biopsy, the first time a surgeon avoided eye contact with me when I asked directly 'Have I got anything to worry about'?
14th April was the first time my blood was taken to be tested for 'tumour levels'
20th April was my CT scan to check for localised spread
21st April was my Colonoscopy
22nd April was my Ultrasound Endoscan
28th April was my MRI scan to check other areas for spread
28th April was also the day I had my 2nd appointment at the hospital when I was told you have Stage 3 rectal cancer and unfortunately because of the position of your tumour we will need to remove the whole rectal area and provide you with a permanent colostomy
Actually whilst writing this I've realised that I do know how I feel about April - I now f**king hate April - but not nearly as much as I f**king hate cancer......... :-(
Yes I have moved on, yes I've had my treatment and my surgery, yes I'm recovering from it *still*, yes, I can live with the bag but I still hate April....
In a few days I'm going back to work, back to some kind of normality and hopefully I can put most of this last year behind me - but there's still that lingering doubt at the back of my mind that this fight isn't over yet.
And I think I will now always hate April and I will definitely always hate cancer :-(
I don't really know why I wrote this post, mostly I don't understand my own thoughts these days - but I suspect that anyone who has been diagnosed with cancer will understand it.
That's it for now - much love to all and thanks as ever for the support you've all given me over this past crappy 12 months.
I do understand. September will always be my hated month.
ReplyDeleteI did step out of the "cancer" mode when we were done the first time. The doctor said we were done and cancer free. It was a pretty good feeling.
Knowing now what I did not know then, I would not change how we treated May 2010. That was the "end" of dealing with Cancer. We removed the port and it gave us a summer to not worry; a fall to enjoy; a winter to travel. January was when the follow-up scans told us we needed to start fighting again.
I guess my point is that after all the fighting you have done, you should be yelling from the rooftops that you are cancer free.
Don't dwell on the recurrence that has not happened. I may never.
I am always thinking of you and Positive thoughts sent your way Carole!!
I understand totally.
ReplyDeleteBiggest hugs and much love. xxx
Hey Carole
ReplyDeleteDecember was my 'month of doom,' and I know just what you mean. That's why I was so keen to try and replace the horrid cancer anniversary memories with our lovely family holiday memories. I do hope that one Christmas we might just totally forget...cancer? what cancer?...
This is just your first April since everything kicked off so its understandable that you'll be feeling this way - hopefully the next one won't be quite so pants - and the next one even less pants etc...these things take time...and anyway, its nearly May, so only a week to get through!
Oh, and Crabbymonty is so right - don't dwell on things that haven't happened! Come on girl - get that positive head on again - you're doing REALLY WELL!
Much love as always
Shents xxxx
Yes, I understand too..........
ReplyDeleteMarch is my hated month, although I was diagnosed in November after expressing health concerns to my GP in October.....the bloody radiotherapy was in March....Urghhhhh, I hate March!
Anyway, glad that you are able to return to some form of normality...wishing all the luck and good will in the world.
Keep posting, I love reading your blog!
Hugs Carol
I just wanted to add that it's not that I'm *trying* to be all doom and gloom - I'm not sitting around constantly thinking about 'c' coming back because I still don't know if it's even gone.
ReplyDeleteI've had no check-ups since my op, my post op care has been pretty naff to be frank - maybe once I finally have a check-up THEN I'll be able to start feeling a little more confident that 'c' is no longer a huge issue in my life.
Shents, I agree that as each April comes around it WILL get easier - next year I'll do something great to replace the foul memory with a good one instead :-)
Katherine & Carol thanks for the hugs :-)
Eric, I think my main problem is that no-one *has* said yet that I'm done, my CEA level was still too high a few months ago and I'm now informed that my 'check-up' in June will be no more than a 'chat' with the colorectal nurses - no scans etc so yet more wondering until around Christmas time - BUT it's not on my mind always, it's just this lingering doubt thing that seems worse this month (because it's April I guess)
Thanks for keeping me in your thoughts, it means a lot especially knowing how much you've still got going on xxxx
F**k 'just a chat with the nurses': get back to your GP and DEMAND a bloody scan! It's your RIGHT to KNOW, not be left hanging in the air until, when?, next December??? Not good enough!!
ReplyDeleteAnd yes, as each April comes around it will get easier. The first one has got to be the hardest to get over.
Hope the return to work goes ok. Don't try and push yourself to do too much too soon. It'll be a bit like starting a new job again, and the first few weeks of that are always confusing and knackering - but they'll look after you!
Still love ya like stupid. xxxxxxxxx
Hey Lou :-)
ReplyDeleteGP won't re-refer me coz I'm already under the care of the colorectal team..however I'll be having a long chat with them in June and seeing if I can get something more concrete done before Christmas. It may all change once they do the CEA levels again because if they've risen then the scan/s would be brought forward I suspect.
Re; return to work - yes, it will be confusing I'm having trouble remembering what I used to do before all this :-)
Haze has been great though and really has put my mind at rest about going back.
I know they will look after me and it's 'that' knowledge that has given me the courage to go back.
Scary stuff though after so long :-)
I'm a big wuss eh
Carole,
ReplyDeleteletting off a bit of steam is OK too. Thinking of you,
Kevin
Hi Carole,
ReplyDeleteI spoke with my Oncologist on Thursday......apparently, after all the treatment, it will be considered that the cancer is in remission, it doesn't look like I will be getting scans etc either......very strange!!!
I feel that cancer patients should be given more info after the treatment is finished...I mean, what would you put on a job application or any other enquiring form for that matter....
'I have cancer?'
'I had cancer?'
'I have cancer, but it is in remission?'
You are quite right, we should no more about our own situation.
Even before radiotherapy..the Doctors talk of 'discomfort....unpleasant effects of...they don't tell you that you are going to be burnt to b*ggery!!!!!'
More hugs
Carol
Carole, I have 'popped' in simply to say 'I understand.' I hear you loud and clear my friend!
ReplyDeleteHugs from Oz xo
Dear Chez,
ReplyDeleteSo so lovely to hear from you. I've been getting more and more worried as the weeks went past. Will reply to your email tomorrow - in the meantime, big hugs to you xxxx
Hi Kev,
Thank you - I know you understand where I'm coming from and hope sincerely that you too were able to let off steam when you needed to.
xxxx
Carol,
ReplyDeleteRE the information we are given...big sigh at times eh :-(
And yes, I totally get the 'had/have/have but in remission' thing..
I've been asked so many times 'but you're okay now though?'..and I have NO idea how I'm supposed to answer this except to say 'Yes, maybe'
I was hesitant initially to tell you how badly I'd burned but also felt you did need to know because I wished so much that someone had warned me in advance.
"You may feel slightly sore as the sessions go on".... LOL (except it was hysterial pain filled laughter *not* funny 'haha' laughing) :-(
I cant BELIEVE there is no thorough follow up for you until December. Is this standard procedure for everyone or are you falling through the net into some kind of abyss?
ReplyDeleteHow come I get 6 monthly cancer checks without having been under an oncologist or needing chemo?
It doesnt make sense.
Please dont hate 26th April too much. Its my birthday!
Hi Fiona,
ReplyDeleteIf I'd had the adjuvant Chemo then they WOULD have scanned me around June/July time - but as I didn't it seems this is now not a part of my care plan.
What I'll be discussing with them during my chat time, is 'why'..why scan me after Chemo but not scan me as a precautionary act anyway.
Personally I think it'll all depend on my CEA levels which I will be insisting that they do.
I need to check with Tony as well what path his care plan followed, problem is there is no 'national after-care plan' for colorectal cancer and it differs from region to region.
I don't hate 26th April (now that I know it's your birthday) :-))
xxxx
Def check with Tony as he seems so clued up. Also what about Graham on cancerchat - he opted out of adjuvent I think? Although he has been quiet for a while.
ReplyDeleteI didnt opt out of adjuvent, the medics decided I didnt warrant it - though I was listed to be added to a chemo trial if post surgery the decision had been it would have been wise.
Yet I still have 6 monthly CT scans and 6 monthly tumour marker blood tests (well 3 months for the latter by choice). Is it something to do with the aggressiveness of the tumour, or is it a postcode thing?
Thing with these tumour markers, as I'm finding out with the HCC ones. The number being out of range doesnt always set a scan in motion. For example, my AFP range is 0-10 but there are HCC survivors pottering along with a level in the 20s or 30s with no tumour. For me, a level that high would warrant investigation. For them, its 'normal'. What you need in your armoury is a SERIES of CEA blood tests so you get a pattern - are they stable or rising or falling.
Hi Sis, I know you won't let them off so lightly in June and will give them the full picture of your symptoms so they can make a decision based on that. Keep a short separate daily note/diary of your health, its too easy to get used to that tired feeling and forget to mention something at the right time.
ReplyDeleteI'm sending you some positive thoughts from the Greek Islands, love you lots xxxxx
a year passed! you are doing great Carole, and everyone else has much better advice than I ever could, but I'm still here still reading your blog and still wishing you well, I hope you have a better April next year and hope that when your back at work normality returns somewhat much love always xx
ReplyDeleteCarole, You got your diagnosis on the 28th and I received mine on the 29th. No wonder we no longer care much for April! The trouble is, the fun didn't stop there did it? It's hard to think back and remember. There are still a lot of dates on the horizon this spring and summer for me and for you, too, I'm sure. (For example, I had my bilateral on June 2nd). We'll just keep muddling our way on through I guess. Thanks for a great post!! And I hate cancer too!
ReplyDelete