Ok, update on treatment since Tuesday.
As you all know they gave me some morphine and gel stuff to apply to the broken skin. I then attended my appointment on Wednesday, struggled again all night with the ongoing pain and continual discomfort then made the decision on Thursday morning that I NEED a break from the treatment.
Contacted the Radiotherapy department at lunchtime on Thursday to let them know I wouldn't be coming for treatment on Thursday or Friday this week.
Spoke to a Radiographer who said she was obligated to tell me that missing two appointments could affect how well the overall treatment worked - I felt so pissed off at that comment that I responded with 'I'm obligated to tell you that actually I DON'T CARE!'...
It's funny how they can talk about possibly delaying my treatment to give me a chance to heal and that's ok but as soon as I say I want a break then I'm putting myself at risk.
Either way, I want and need a break now. My skin is too broken and sore to continue at the moment and I need to heal before I carry on.
Had a chat with James today and that helped a lot. I'm going to ring the Colorectal nurses at Kings on Monday morning if I'm not feeling better because I want to know HOW everyone is so sure that I 'need' 25 sessions when they don't actually know if the treatment is working, has worked really well, has made no difference etc....it feels like total guesswork to me at the moment and I've got this notion in my head that maybe the external burning is now so bad because the tumour HAS been reduced internally?...
What I do know is that I don't need anyone giving me a hard time over this because I've got more than enough pain to cope with at the moment.
I'm spending the next few days doing the bare minimum, concentrating on my burns and myself and sleeping if necessary to get through the pain.
Rab cooked a nice meal last night and is planning to cook again this evening - he's taken the day off work today because he feels it's better for him to be here at the moment - I know he's worried about me because I don't usually break down in tears on a daily basis but that's all he's seen now for the past two weeks.
James and Leanne have offered to take Dj out on Sunday and talk to him again because I know he's been feeling really worried about me being in so much pain. I try to hide it from him as much as possible but he's been aware this week that it's been awful and I can see he's feeling a bit scared at the moment. He didn't go to school today because his stomach was a bit upset during the night and he was feeling 'sickly' today - I think it might be because he's worried about things in general.
Anyway, will update my blog over the weekend to say if I'm feeling any better after taking a break from the zapping for a few days.
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..
So sorry that you are feeling so bad and hurting so much...helpless Tony as there is nothing that I can do or say to make it better!
ReplyDeleteYou know your body and you have been through so much so far already with so much more to go through. I understand the hospitals attitude as they have to cover themselves against law suits etc but still sticks in your throat.
To be honest like you said they can delay it to suit themselves such as bank holidays, when mine was stopped for a day and also when I had the heart problems because of the capecitabine (chemo) the radiotherapy was stopped for a couple of days...
Take that time and be a hermit for a couple of days, looking forward to the report that you ar feeling recharged and ready to get back on the treatment wagon!
T x
Thanks Tony, am sitting here crying quietly to myself as I type this because the comment above is sooo right "with so much more to go through"....THAT'S exactly how I feel, I'm at the blasted beginning of ongoing pain not the end :-(
ReplyDeleteI still have to face the op yet, which I know will cause me deeper more intense pain again BUT have to admit that for the first time over the last few days I've started to think that I'll be glad to get rid of my bum and all the pain that seems to be centred on it lately.
Let's just hope that a stoma and colostomy bag is more comfortable for me in the long run eh.... :-)
I'm actually starting to feel a LITTLE more comfortable this evening so am keeping my fingers crossed that a few more days will sort me out.
I've decided that I'm not continuing Radiotherapy until I feel more repaired though because I really really can't take this pain any longer!
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ReplyDeleteWish i could take the pain away sis the hardest part is knowing that we cant i dont think a family has never been so helpless but we all love you sis cause your the strongest out of all of us we all look up to you cause of your strenth DONT let this beat you your to strong for that
ReplyDeleteThat last one meant to have the word Hug inbetween.... :-)
ReplyDeleteThanks Bruv, I've been doing my best to over-ride the pain but it did really get to me over this last week.
ReplyDeleteI've had ongoing pain since day 3 of the treatment now (9th June) - which means the last 23 days have been full of pain and I'd just had enough on Thursday.
I'll get back on top of things but do just need a break first.
Today feels less painful *althought still quite bad at the moment* but at least abit less pain than before.
As soon as I feel I can cope again I'll resume the treatment - but not before XXX
As Tony said, you know your own body so it was right to stop. I went into the Rodiotherapy wiki and read that some patients were accidently given over 100 times the intended dose! Mistakes do happen! Not good enough.....you know your body and I wonder if there is something wrong with the dose? Big hug sis.
ReplyDeleteps. We haven internet and landline now so back in the modern world at last. Catch up on email and I will give you my landline. xxxxxxxxx
Although this is an American website, it may be of interest?
ReplyDeletehttp://www.rtanswers.com/treatmentinformation/questions/safetyquestions.aspx