Profile

Poppies

Regular user
Female
ABOUT ME

Diagnosed June 19 with stage 3 bowel cancer, scheduled for a lower anterior resection on July 30th.
Out of hospital on August 7th with my new buddy "Stormin Norman" I dreaded it and didn't even want to look the first time the stoma nurse came to the ward. I had no intention of ever naming my stoma, but somehow it has helped and we are getting along well and family friends and I have had a few laughs about Norman. He is becoming so well known, will have to set up a fan page lol. Humour is important I think.
Now waiting for the histology report, but not letting tomorrow spoil today!

Saw the consultant on Thursday Aug 22nd, she said they had removed all the cancer that could be seen, but because the lymph nodes/blood vessels removed were cancerous, she recommended chemotherapy.
Somehow everything went out of my head, I didn't ask the questions I wanted to. No idea of staging, how many lymph nodes removed, hopefully I will get a chance to ask these later on.
A bit frustrated sat here on Aug 24th, that there is so little understanding locally of tablets and capsules can affect some people with a stoma. Over 3 weeks on 4th lot of medication for UTI, if anything worse and a pain in my side and passing a little blood. Surgery advice yesterday, keep taking the capsules.
Took 6 lots of medication and UTI seems better at the moment, phew!
Wednesday September 25th, first appointment with oncologist this afternoon.
I was offered 3 or 6 months chemo therapy, the oncologist said that recent research showed that 3 is as effective as 6 months, so we leave it to the patient? I opted for 3 months, may regret it later on!
I start on Wednesday October 9th, 4 cycles of Oxaliplatin and Capox tablets over 2 weeks and third week rest week.
Bad reaction to chemo and it was stopped half way through. Then developed breathing problems and palpitations, so the Capox was stopped whilst i had a heart echo. Back to the oncologist who with clear heart results decided to rechallenge and start chemo again on Nov 13th.
He has reduced the Oxaliplatin to 80 percent and a slower infusion. Pretty anxious about having it again, but will give it a try.
Again a severe reaction to the oxaliplatin, keeping the nurses there late, they were so good and wrapped my neck in a heated wheat filled bag to get me home .
Dec4th Oncologist changed treatment to weekly 5FU starting on December 23rd.

Telephone call from Oncologist March 18th to say treatment suspended due to Covid
19. Phone oncology appt May, decision made not to continue my treatment because they still can't continue it and the gap will be too long to make it worthwhile they said. It felt like a huge blow and I felt quite low for weeks, no treatment, no CT scan and no knowledge of what's going on inside, depressing.

Now waiting for a CT scan, no appt as yet as of June 11th.

Scan July 1st, results July 22nd. NED wow. Awaiting ECG results and a brain scan.