Profile

Kareno62

Regular user
Female
ABOUT ME

53 year old diagnosed with rectal cancer locally advanced with possibly 1 lymph node but no liver or lung mets. 5 weeks daily chemo radiotherapy with extra IV chemo once a week as part of Aristotle trial with view to shrinking tumour. Surgery towards end of year with possible (temporary?) bag then 6 months 'hardcore chemo - you will hate me' to quote the oncologist then bag reversal?
28/11 low anterior resection with temporary stoma. Tumour removed with clear margins and 2/17 lymph nodes affected both close to tumour
29/12 readmitted and found to have infected build up of fluid behind Bowel rejoin. Drain inserted through right buttock and antibiotics.
9/1 sent home with drain still in place - very uncomfortable
13/1 readmitted feeling breathless and found to have large blood clot in each lung. 2 week stay in hospital with drain in place although keeps leaking
27/1 drain replaced and sent home on blood thinning tablets. Drain no longer working which is a little worrying
3/2 'middle' member of surgical team decides drain has finished ( although I have my doubts) and removes it - the relief is amazing and I consider a cartwheel until I remember my stoma bag
2/3 check up with surgeon who sends me for blood test which shows drain had not stopped and there is still a small build up of fluid sigh! Decides to monitor it via regular blood tests and hope it disperses naturally
7/3 meet with oncologist to discuss chemo and she has suggested 9 fortnightly sessions of xelox day 1 iv, 9 days tablets and then 4 day break. Does not think I will manage 9 as 'fatigue will wipe me out long before then'
3/4 1st chemo session. Arm very sore for several days and slight nausea but ok apart from that.
18/4 2nd session and arm feels like I've been thrashed with nettles. Considering pic line
9/5 pic line inserted and next session so much easier.
17/5 onc reduces doseage by 25% as white cell count low every week
4/7 oxaliplatin stopped after session number 6 as tongue has gone numb. Continuing on capecitabine only for last 3 sessions. Feeling bit tired but still working and getting out for walks when I can
4/8 onc decided to finish chemo after 8th session due to red tingly feet. Scan mid August followed by appointment with onc mid September.
20/9 scan shows no sign of spread although there appears to be damage to the sacral area from the radiotherapy. Will have scans at year 1,2,3 and 5 and follow up with colorectal nurse. Just stoma reversal to go now
16/3 Stoma reversed, ileus again, vomiting but bowels now working fast and loose. Not eating too well but hopefully will improve. Discharged 23/3
28/3 Struggling sleeping and just thinking about food is making me retch. Infection marker raised, bloods all over, readmitted. Found to have infected fluid build up in stomach, nil by mouth for 3 days, then clear fluids for 2, increasing to soup and a sweet then normal diet. Potassium low so on 12 hour drips and antibiotics but infection marker coming down slowly
12/4 Discharged with 2 lots of antibiotics. Enjoying eating all the foods that I avoided with the stoma. Bowels still bit loose but able to control. Feel very weak and doc has prescribed some strong vitamin d tablets.
24/4 Infection marker down to normal - hope appointment with surgeon next week shows scan results to be same
2/5 Scan shows that leak all gone and everything else clear - happy days
8/10 CEA level checked and less than 1 whoo hoo!
Jan19 CEA still less than 1
Mar19 Scan clear
Jul 19 CEA 1
Nov 19 CEA 1
Mar 20 CEA less than 1
May 20 Scan clear
18/6/21 - CEA 1.8
2/7/21 - Colonoscopy all clear
22/11/21 - CEA 1.5
14/11/21 - 5 year scan all clear and discharged