Diagnosed April 2021 following removal of 18mm bleeding polyp. Laparoscopic High Anterior Resection 11/5/21. No stoma. Recovered well from the surgery. Bowel still settling and being careful to not over exert but otherwise recovering well from the surgery. Diagnosis pT1 pN1 (2/6 lymph nodes) M0 R0 moderately differentiated adenocarcinoma rectum pMMR. I have been offered CAPOX adjuvant chemo but still not decided whether to proceed with this. Have to decide before 19th July and start it before 3rd August if I do go ahead.
23/7/21 Update 10 weeks since surgery. Very undecided about the adjuvant chemo but eventually opted for it and start soon. Decision was mainly based on the cancer that was found in the lymph nodes. Bowel took a while to settle with up to 15-20 trips to the loo a day and mainly passing motions at night which was exhausting as sleep even more disrupted than usual. Consulted a private nutritionist to support through chemo. She prescribed a keto diet and a bunch of supplements. Within 4 days my bowels are almost back to normal. And during the day - hurrah. Although this all likely to change once I start the chemo. Just the heat keeping me up now! I have registered with the Penny Brohn Centre in Bristol which offers masses of free advice and support about complementary therapies, nutrition and general wellbeing. All free but they are grateful for donations. I plan to use diet (including supplements) exercise, acupuncture and probably fasting to get me through the chemo. Fingers crossed this will all help to mitigate some of the side effects and have a positive outcome.
04/08/21 So had my first Oxaliplatin infusion on Friday 23 July 2021. It did not go well. I had a very bad reaction and was really quite unwell for over a week. I did not start the Capecitabine. Review with oncologist today who said I should not have any more Oxaliplatin as I had such a bad reaction. He said it was rare but it does happen. I now have the option of starting just on the Capecitabine with the option to stop at any time. Or no more chemo at all at this point in my journey. I may be one of the lucky ones that is already cancer free after surgery - but only time will tell. I have a provisional date to start the Capecitabine on Monday 23 August but have time to think about it. I have also been exploring ctDNA liquid biopsies as a more refined blood test to see if this will help me decide whether to continue with the chemo or knock it on the head now. But it seems like the research is still in its early stages in this country so a test may not really inform on how to move forward. I am now looking forward to 2 weeks of not thinking too much about cancer and enjoying a bit of the summer.
24/8/21 Started Capecitabine only. No immediate reaction which was relief.
30/8/21 Day 6 started to get flu like symptoms - aching, tired, sore throat, dry mouth and dry cough. No temperature but have had a PCR Covid test to rule that out just in case as not sure if related to the chemo, Covid or just a normal cold virus. It was not Covid but continued to test daily.
2/9/21 Cough and cold did not subside so had to go into hospital to rule out an infection and/or blood clot. Hospital protocol was to take blood tests and Covid tests then immediately give intravenous antibiotics pending blood tests and chest ray results. All clear and sent home. Back in 2 days later now with a high temperature as well. Same protocol. Same outcome. But told to stop the Capecitabine and sent home with more antibiotics 'just in case'. I had only taken 11 days worth of the Capecitabine. I then had a further blood test in advance of my review with my oncologist. He said my bloods were very low and I could not restart the Cape yet. He advised I was in a very grey area in terms of whether the chemo was going to be of any benefit given the downsides so far. I have now decided not to have any more chemo and to hope that the surgery removed all the cancer. I will still get the usual check ups so fingers crossed they will all be clear. But only time will tell.