Hi all, firstly thank you all so much for all the support and info that you've been giving me, it's appreciated so much, everyone has been do good.
My sis came to visit yesterday and I showed her the latest letter from my local consultant, I had focused on 1 part she saw something else and had a breakdown, now I'm confused.
As an overview of what ny consultant has said, I have T2 tumor, very low down in my rectum, 4cms from my bottom I've had 3 colonoscopys, the last one was supposed to been with an ultrasound scan to see how far through the bowel wall, and to confirm it was T2, it has spread to my lymph nodes, so he said I will need chemo after the op. The op that they're now looking at, the TEMS, op can't be done, so fingers crossed the lady I see at Wythenshawe tomorrow, will be done early September and robotically. My local consultant could do an op, but it would be through my stomach, rectum removal and stoma, 40% chance of it being permanent, that's not a worry, if I need a stoma I need a stoma.
In one letter my consultant has said that if the TEMS op couldn't be done, then a professor Saunders has said that I could have a non standardised approach to "having radiotherapy then chemo to see if this could treat your retcal cancer and also facilitating organ preservation"
I read that as being try to save me having a stom, so preservation of my colon and rectum. That has never been discussed with me, it was just in a letter. When was told that a TEMS approach was not going to be something that the consultant at Manchester could do, I phoned my local colorectal nurse and said just do the big op, I want it out. Then the local consultant, Chris Smart, rang me and said it may be able to be done robotically, and I'm seeing that consultant at Wythenshawe tomorrow, he pulled some strings, rang her when she was on holiday last Wednesday, amd I got a call on Friday saying she would see me on the 22nd at 10am. That's how I understood everything. Then on Saturday, why do they send letters to be recieved on the weekend when you can't call them?! Anyway the latest latter that perturbed me and upset my sis says I'm general that the bloke at Manchester would do the ultrasound endoscopy, to see how far and staging, he didn't do an ultrasound scan, just a sigmoidoscopy, and he'd already told me before the scan that he couldn't help me. He was supposed to be "clarify the staging with the endoscopic ultrasound" that wasn't done, and then goes on to say that if he couldn't do the op via the TEMS procedure, "it may be best in the form of a robot, given how low this is to give you a sphincter sparring procedure." I presume he meant "sparing"
I was focused on the sphincter part, as it's never been discussed, only removing my rectum, and maybe having a stoma, whether permanent or not, my sister broke down when she saw that he wanted to clarify the staging. She thinks it could be worse. Does anyone have any insight into this, I'm a little anxious, I know I can ask the lady at Wythenshawe tomorrow, but I'm anxious now.
I had a bad night, was sat on the loo for 3 hours, sweating, l soaked 3 large bath sheets with sweating, I had awful cramps, buscapan didn't touch the cramps, after a massive struggle I did manage to open my bowels, it was as if there was something stuck and after straining and struggling it was expelled. I had a lot of bleeding, which has settled now, but the same thing happened last Wednesday, I'm at a loss as to why I've started struggling so much, I take 3 docusate in a morning and 3 at night, senna at night, I know senna can give you cramps, but I did stop them and went to the Macrogol sachets, which I can take up to 8 sachets a day, but the cramps are still just as bad, and I have problems with getting the drinks down without me throwing up, but it was maybe every 15 to 16 days, now its more frequent and I'm a little worried, especially as the tumor is low, when I struggle it's like it prolapses out of me, and pops back when I finish straining, last night it seemed a lot bigger than usual, maybe nearly twice as big. My bottom is sore, and it's been very itchy for the last few days. Does anyone else ever have this?
Hi MissTee
It sounds quite confusing when they’ve talked about different operations so hopefully tomorrow you will have all the information needed to allow you to prepare with whatever is needed.
You sound really positive about getting that Tumour out and that’s definitely the way to go. Thats how I felt I hated it there and like you before I had my operation I had a real struggle to open my bowels. I became quite weak as I couldn’t eat too much food as I knew I couldn’t process it and open my bowels. I also had discomfort and really worrying bloody stools. When I phoned the nurse she said that the tumour was bleeding as I opened my bowels. That made me more determined to only put in easy food to process .
So I had two Complan meal substitutes made with milk and three really small snack type meals spread over the day. I made sure that the food I put in I could pass. It worked I gained energy and going to the toilet wasn’t as traumatic.
Good luck tomorrow
Ann
This all sounds really good Rosie, and your consultant sounds excellent. All very positive going forward, and not long to wait for your surgery.
I’ve had multiple times of needing to do the blood thinning injections, and they only take a moment so don’t be concerned about them.
So glad you are away from the circling sharks!
Sarah xx
