Pain Management plan.....

Today, Tuesday, is the day when I get to see the Clinical Radiotherapy (CR) staff to discuss anything I'm either worried about or struggling with - so after my session took place (17th - 8 more to go) I met with one of the really helpful CR's.

Told her that I really can't tolerate the pain any longer and it's been a battle to even attend the appointment for the last few days. She asked if she could examine the area - I agreed as long as she promised no poking around at all, literally just look no touching! (it's really *that* painful).
So she looked and said My Goodness! I'm not surprised you've been thinking about not coming, I definitely need to get a Dr to have a look and decide what we can do to sort this out today for you'...

I cried and she gave me a hug and said she thinks I'm being really brave by even showing up for the appointment after seeing the way in which I've now burned.
Told her I felt like a big baby and said that plenty of other people are probably putting up with way more pain than me without complaining - she looked genuinely shocked and said
'Carole, you have serious burns causing you massive pain and what has happened here is rare so I really don't think you are a baby at all - I actually think you're being very brave' - I felt better knowing that she didn't think I was just whinging about it all and could see that it was genuinely a severe problem.

Anyway, Dr then came and looked - said pretty much the same as the Clinical Radiologist - serious burns, need to get it healed asap, proper pain relief needed and review at the end of the week. Treatment may be stopped if we can't get it under control as the damage is extensive at the moment.

I asked her if she felt the bowel was maybe inflamed and if that was what was causing pain on bowel movements and she said
"The bowel is now badly inflamed without a doubt, inflamed, sore and causing me concern about long term damage now"

I realised that if I hadn't been told up-front in April that I was going to end up with a permanent colostomy bag, I probably would have been told that today, as she went on to say that normally this sort of burn damage around the muscle area causes long term permanent 'control' damage to the rectum and sphincter.
She went on to explain that it's unavoidable because the tumour is lying so low down in the rectum, it's impossible to treat it without causing other damage to the surrounding area....

Dr prescribed a mixture of Morphine and a healing gel called 'Nu Gel'. I have to break open the Morphine capsules and mix it with the gel daily and cover the burns with it as often as feels necessary.

They also gave me:
stronger painkillers and said I have to take them regardless of the appalling dreams (that'll be another post another time),
some medicated strips that can be placed against the skin without sticking (thank goodness for that!)
syringes and needles for getting the Morphine out of it's little containers,
sterile wooden sticks for mixing my gel mixture up daily
small pots to mix up my 'healing gel mixture',
a special bin thing to put all used needles and morphine bottles into,
and a selection of health shakes in various flavours as they are concerned because my weight has dropped off a little - it's currently 51kg.


When I left I looked like I'd just robbed a Pharmacy department - Dj was fascinated by all the various bits and pieces when I got home anyway, especially the 'Sharp' bin and syringes :-)


So am hoping that this will make some difference because the pain has been really bordering on being totally unbearable this last week and although I've managed to muddle through, every day has been so hard.
My CR said it isn't an instant cure but I should notice a gradual lessening of pain over the next few days - certainly by Friday I should be able to say I'm noticing a difference - apparently. I really hope so anyway.
Dr said that if the pain is still as hard to manage by the end of the week, then she'll be looking at Morphine by mouth and stopping treatment.
I want to get to the end of this now because I don't want to have a break, start healing then start burning all over again.
8 more to go.....fingers crossed that I can do it.