71. I've got the shits.

When I say I have the shits I mean that literally and figuratively. I started on the abemaciclib on Nov 17th. That was a day after my one year cancer anniversary. The tablets came in the mail by express post as they can’t be purchased from mainstream chemists. I’m on a compassionate release program so it is closely monitored by my oncologist and there are only a limited amount of spaces available so there is quite a bit of paperwork which Dr Julia had to fill out. I think I mentioned that 90% of people get diarrhoea in the first couple of weeks so there was also a box of gastro stop which was delivered in the package too.

The first side effect which I noticed wasn’t the shits, it was sore spots on the side of my tongue. This is an interesting one as it is the reaction I get when I eat chilli peppers and they can turn into ulcers if it’s a bad reaction. Hence the reason I avoid them and now I also try and avoid capsicum as it gives me a tummy ache and reflux. Other times I have had this reaction was when I had covid-19. It was pretty much the only symptom I had other than getting tired quicker for about a month afterwards. I also did get some tongue sores when on the AC chemo (the ones I had every 2 weeks). So, it seems like this reaction is when my body gets the shits with me and that’s how it tells me it isn’t happy. The sores this time did go away on their own after 3 days and they were mild and didn’t interfere too much with my speaking, eating or drinking like they have in the past.

The day I started the abemaciclib Kim called me and went through all the side effects which I had read about in the information booklet that she had emailed to me. Ways to help if I do get diarrhoea. Don’t eat brassicas, do eat white rice and pasta, and potato with the skin off. Well, how to balance my paleo choices which help with my joint pain with the recommendations to stop me getting the shits. Reminds me of the blog post I wrote when I was on chemo called It’s All About The Food. My appetite has never really returned but I was starting to figure out a bit of a new normal of how I did feel if I was needing food. That’s pretty much been thrown out the window again as the new tablets have made me have that bloated and not nice tummy feel a few times. Not as bad as when I was on chemo, maybe 30% of that feel. My interest in food has taken a hit (another side effect on the list) though my taste buds seem to be doing ok (also on the list). Thankfully I haven’t felt nauseous, which is also on the list, and I do have some anti nausea tablets which I didn’t need when I was having chemo. My bag is starting to look like a pharmacy.

The shits didn’t start until the Sunday night around 8.30pm. I’d had a couple of good shits in the day time but by the night not so good. Some tummy pains and cramps as well. I did take the gastro stop tablets. Directions (and Kim) say take two tablets at the first bout of the shits and then one tablet at the second (or third or fourth). If the pain and cramps get too bad or don’t stop, or the shits go on for 24 hours then it’s off to emergency for me. Keep up fluids, hydrating sports drinks if I have a longer shitty episode. Eat apples, bananas, white rice cooked in broth. Clear soups are good too.

Thankfully my shitty episodes haven’t majorly impacted my life too much in the past couple of weeks. I have had 4 notable times where I’ve had to use the gastro stop tablets. I’ll be discussing all of this with Dr Julia tomorrow at my appointment. If she deems what has been happening to be too much then she can drop my dose from 150mg per tablet to 100mg per tablet as that can sometimes help too. Kim also called me on the Monday to check how the weekend had been. She recommended Kenalog paste to help with the mouth sores. I got a tube but didn’t end up using it as they cleared up on their own. It’ll be good to have just in case. I have been keeping up with my mouth hygiene. Rinsing my mouth after eating with salt water and cleaning my teeth after meals when I am at home.

Right now I’m sitting at the cafe at Sutherland Hospital waiting for my appointment with Paula in about 45 mins. I had to have a blood test today before seeing Dr Julia tomorrow. She is monitoring my kidney function, white blood cells, potassium and calcium levels - among other things that were on the list. I’ll be having fortnightly blood tests to start and then it will go the monthly tests when she says. The good thing is that protocols have been updated so I can use my right arm if only blood is being taken. I can’t have a cannula in it as pushing anything into the arm could be bad due to the lymph nodes all been taken under my right arm. At least the arms can share being pin cushions now.

Another reason for having the shits is in the last few weeks two of my friends have been diagnosed with cancer. I won’t go into too much detail but one is breast cancer and I had a discussion about my experience with the bilateral mastectomy so that she could have more of an idea for decisions about her own medical care. The other is stage 4 lung cancer and the prognosis for this type of cancer is 2 years to maybe 8 years life expectancy as of the last information I read. Not what you want to hear for a friend who is a similar age to me. So #FUCKCANCER! Knowing what I have been through this year and reading what treatments they will or may have to go through leaves me very very sad.

My sore left hip/pelvis/back/knee pain is also giving me the shits. I have had an x-ray on my hip and pelvis, an ultrasound on my hip and an MRI on my knee. Tomorrow I’ll get the results when I see my GP, though perhaps the MRI results won’t be ready yet. The lady at reception says it’s been taking 4-5 days for them to come through and I had the MRI on Tuesday night. I’ve been going to my exercise classes but have been having to have a modified program for the below the waist stuff. Sometimes it’s not as bad and I can do a bit more but on Wednesday it was really not happy and I could only do very light movements with very light stretchy bands. I think that did help as my hip especially did feel more mobile afterwards and today is a bit less sore. It still feels like my pelvis grinds against my spine at times though. I keep going to my classes with Lewis because I know that exercise is medicine. If I don’t go then I feel much more stiff and in pain and can’t move as well. Sometimes it can take me about an hour to feel like I can get out of bed. Sometimes my fingers are so stiff and sore it takes a few hours for me to bend them. I have been doing some classes at Restore as well but have used up my 6 free classes. I will get a block of ten classes once I know what is going on with my left leg. They’ll be $35 a class but I get $26 back with my health fund.

Even though there has been a lot of things giving me the shits in the last couple of weeks I have had some good things happen too. I have been sewing, mainly hand sewing and I finished Zaeli’s very belated birthday present. It turned out so colourful and I had a lot of fun doing it. She was a bit tired when she got in on Sunday night but when she saw it again on Monday she was a lot more excited for all the colours and finding the butterflies, elephant, owls, buttons, flowers, beads etc. I’ve also started a new quilt project which I’m quite enthusiastic about . Again inspired by Kate from The Last Homely House on her YouTube channel. My hexagon quilt project is the other one that I was inspired to make after seeing the one she made for her granddaughter Agnus.

Choir has been fun. I’m really enjoying playing my alto recorder as accompaniment and instrumental parts to some of the songs . It has just a beautiful mellow sound and the high notes are super clear and easy to play as well. We have done one out of our four concerts so far. We have a street concert on Dec 14th as a free end of year concert where we practice at the Uniting Church at Engadine. The other two we have will be in the city at Martin Place at the Christmas Tree, Dec 7th and 17th. I am really hoping there is not any shit episodes which will make them difficult. I’ll ask Dr Julia if there is any preemptive action I could take before I go into the city.

I have a couple of other projects I’m working on. I am starting to writing up a calendar for “work” where I add in the things I’m doing in between all my appointments and exercise in a couple of 2 hr blocks. See how a bit more structure will actually work in my life and looking ahead to what next year might look like. So far the block of time I put aside yesterday afternoon to work on a couple of things ended up with 3 shitty episodes, gut pains and cramps, dizzy head and then having to go to bed in the cool air con for 3 hours until I felt well enough to get up, After dinner (which I didn’t really feel like eating) I did having enough energy and mental space to do a little slow stitching project. Christmas themed tree ornament. Looking ahead for presents for the nieces and nephews.

A couple of days ago I was going to work on my new quilt project but my brain wasn’t kicking in well enough to concentrate on that so I organised all my little scraps of fabric into colour waves into some boxes I got. I also cut some of the bigger scraps into either 1.5” or 2.5” strips or 5” squares. There was a lady on YouTube, Terry I think it was, that mentioned if you take the time to do this every so often then you have a pile of scraps already pre-cut and then you can make a really quick crazy quilt with all the pieces. Sounds like a plan! I also reorganised my wool/yarn stash into a box that fits under my bed. For some reason I have A LOT of white and cream wool. Some of it is in 3 ply too. I’ll have to think of some nice crochet project to do with it. I don’t mind doing patterns like jumpers etc but would much rather blankets, scarves and beanies. They don’t use as much brain power and are more meditative. That’s what I like to feel when I crochet. Helps to balance out the shitty episodes with the calm episodes.