A Blog About Living with Mental Illness
Tomorrow morning we have our first set of CT scans since starting chemo. We’ve had 5 of 12 rounds of the chemo combo known as “folfiri” which is a combination of fluorouracil, irinotecan and folinic acid, we get this via IV infusion every two weeks with a bottle pump attachment thingy to take home that keeps infusing via the chest port for a further 48hrs.
I’m not a fan of chemo to be honest as thus far it’s made me feel pretty nauseous for the first few days and generally unwell for the week of treatment then the second week I’m still very tired but generally feel much more human and able to get out of the house and go places.
Most bowel cancer targeting chemo treatments don’t cause hair loss as a side effect, just some thinning. Unfortunately the irinotecan part of the FOLFIRI treatment has got hair loss as a side effect. Our hair started coming out a bit about two weeks into treatment and so in an effort to find some control in the situation and get used to hairlessness we got a pixie style short hair cut done.
After the haircut, our hair pretty much stopped falling out, so it’s a great deal thinner than it was but no overtly weird bald spots. Normally this would be considered fabulous news, and it is really, but unfortunately there are more long hair preferring parts in our system than not and our long hair took years to grow so now that it leaves us looking a little like a lost member of a boy band some parts of us are a little pissed off that we jumped the gun with the haircut!
Sometimes I just tie a scarf around our head if I can’t be bothered trying to style the awkward backstreet boy look and I see a lot of beanies in our future over winter!
Over the last month or so I’ve been getting some increasing abdominal pain, it’s not life shattering but it’s uncomfortable and new, notably worse after eating. I mentioned it to the oncologist at the last visit and it was quite sore with palpating too so he has ordered CT scans of chest, abdomen and pelvis. We would have been due for scans after round 6 of chemo anyway so it’s just a little earlier.
I’m a little skeptical of CT scans after our initial diagnosis by CT found the tumour only on the ovary and missed the primary bowel tumour AND several other tumours scattered around the pelvis. It was only during the surgery to remove the ovarian tumour and subsequent PET scan & colonoscopy that they found more of them. I have to write a note to make sure that we remember to ask the oncologist why he went with CT rather than another PET scan.
So that’s pretty much where things are at. Physically healing well from the Peritonectomy surgery and we have an impressive full length abdominal zipper scar to show for it. We are much better at dealing with the whole ileostomy situation now too (only had an explosive shit the bed situation once since leaving hospital – touch wood!) Still hurts to sneeze, cough and belly laugh but it’s improving daily.
I’m a little bit nervous about what tomorrow’s scans will show, I won’t find out the results until the oncologist appointment the following Monday, fingers crossed!