73. Pain, Poo, Patience and Perseverance

It’s been almost two weeks since my last blog post.  Where DOES the time go?  Today is 4 weeks since I started on the abemaciclib medication and the poo episodes have calmed down.  My tummy isn’t all that happy and I’ve started to revert back to smaller meals, or grazing, a few hours a part.  That seems to help.  I sort of liken the tummy feel to about 30% of the icky chemo tummy that I had on the AC chemo (the first four I had).  I have lost a lot of interest in food again and have to remind myself that I need to eat.  I’ve been keeping Kim updated and had a chat with her yesterday.  She was happy to hear that the poo symptoms have gotten better, I’ve been able to manage them with limited gastro stop medication as that is what the research and trials do show that happens as the body adjusts to the medication.  If it wasn’t adjusting then my dose would be dropped to 100mg twice a day.  I recently met another lady who is on abemaciclib and she started on 100mg and then dropped down to 50mg.  Physically we are a lot different so maybe height, weight, muscle mass, fat distribution all come into effect too.  We had a great catch up and she was so happy to meet someone who lives so close. She is on a Facebook group for abemaciclib but everyone lives either in the USA or UK and there are different protocols for different countries.  We will definitely meet up again, probably in the new year as Christmas is really rushing up fast.  

Centrelink has approved my carers allowance for helping Pither in whatever way he needs.  Increasingly I have been needed as a taxi service, especially with this really hot weather we have been having. That takes it out of healthy people but for people with any type of impairment it makes a huge difference.  Thank goodness we have air conditioning in the house now.  The heat kills more Aussies a year than any other natural disaster, mostly older adults, small children and people with compromised immune systems or chronic illness.  I now come under that category too.  I’m still living under the poverty line but am now $68.60 a fortnight under instead of $260 a fortnight like I was at the start of the year.  Every little extras helps, especially when the foods I can eat are a lot more expensive and specialised than the what most people buy.  It should be criminal that junk food and what is called food is so much cheaper when it is packed full of sugar, salt, bad fats, additives, etc etc.  The research clearly shows how detrimental this is to health outcomes and yet people are being made sick by “food”.  Often it’s already people in the low socioeconomic areas and food deserts that suffer and have to spend money on bad food. This in turn makes them sick, and then they become a burden on the health system and can’t work so the economy is impacted too.  Children are impacted, they don’t learn as well, the poverty cycle starts younger.  I could rant more on this but I won’t.  The governments really need to pull their fingers out and start making companies accountable for the “food” but also the packaging it comes in.  That could be another rant but this post is already getting long.  

On the topic of food I definitely feel better not having grains, legumes, refined sugars and even have pretty much limited cheese.  And I LOVE cheese. I still have greek yoghurt which doesn’t seem to affect me too much.  Because of my Grade 4 osteoarthritis in my left knee I have been looking up research into foods which can make the pain worse.  Nightshades come high on the list as well as the stuff I’ve already cut out.  I have noticed that tomatoes do give me a pain spike so I’ll be limiting those.  Even though I have cut out foods I do feel quite a bit more free in my choices and have been enjoying trying new recipes out.  Even though my interest in food has tanked in the last month the creative side of making the food hasn’t.  

I did a baking day with Evie last week.  It has been many months since we had one and she will be going to school next year so time will be limited even more for these opportunities.  We made gingerbread cookies.  She is getting really good at cracking eggs and knowing the difference between mixing, folding and stirring ingredients. She has picked up a lot of tricks from John Kanell on his Preppy Kitchen YouTube channel.  I think she likes watching his videos as much as I do.  I had to leave before Evie really got into the decorating but she did decorate one for Grandpa to have which I brought home with me and which he appreciated.   Ange sent me photos of the finished products and they were super amazing.  She sure does have a creative eye for balance of colour and texture.  I think most 5 years olds would pile on the icing as thick and high as they can and then use every single sprinkle or decorating option available.  

I’ve had a few appointments.  The OT at the Sutherland Hospital saw me again. It’s been three months already.  She says there is a slight uptick of fluid in my arm but nothing to raise any alarms about and it probably is because of the hot weather.  She says she is happy to see me again in six months and to keep going with my exercises and self lymph drainage massage.  It’s nice to know that appointments are starting to end up being months apart instead of weeks apart.  I also saw a Physio at Restore for my hip and pelvis pain.  Seeing as the x-ray and ultrasound didn’t show up anything major there a physio can help with whatever muscles need to be strengthened and which ones need to be stretched.  She says there is a LOT of tightness in my outer thigh, hip and all the way through my butt and up to my spine.  She did some release techniques which involves an elbow poked onto the most knotted painful bits and held for 30-60 seconds.  It does feel better afterwards.  It’s also what Carlie often does in my massages.  The physio said it was very refreshing having a client who knows how important exercise is and that often that is the most important thing someone can do to relieve pain.  We went through my exercise programs I do with Lewis (she commented “You have a really great PT here”) and she said that he is doing everything she would recommend so she is happy with me to keep going to his classes and only see her if things escalate or if I need to have surgery on my knee and then she can have post op help.  She read my MRI report and grunted at one part and said “urgh, grade 4 osteoarthritis…torn medial meniscus…and all these other bits floating around.  I’m surprised you are still walking around.”  That make me slightly a bit trepidatious about my appointment with the knee surgeon.  That is tomorrow at 3.15pm.  I got a phone call this morning saying they had a cancellation and could I come in tomorrow instead of Monday.  It works out better for me tomorrow anyway so I was happy to change it.  

Last weekend I was going to go away and visit some friends (two difference families) but due to various circumstances on their end it ended up not happening.  I’m actually glad as last Saturday I had a bad night beforehand and then alternated between feeling nauseous, gut pains, almost diarrhoea, dizzy, leg pain, finger and hand pain, and just feeling really crappy overall.  It did mean that I was able to be here to help the parents get to church on Sunday as Pither’s legs were having a bad day and the train wasn’t going to work. I also was here for the afternoon family get together.  50 years since Pither asked Mither to marry him.  It was only a short two and a half hours get together but I was pretty much done before the last hour was up.  By Monday I was a bit better and Tuesday better again.

Another reason for it being better I didn’t go away is on Thursday my choir had the first of it’s Christmas Concerts in the city at Martin Place at the Christmas Tree.  I went in on the train with a handful of other choir people.  Some in their costumes already but I changed when I got there.  Way too hot to wear it for too long.  There was A LOT of standing up, nowhere to sit, and so by the time I got home at 9.15pm. I was totally wrecked.  That followed through to Friday so driving 2 hours up north would’ve been quite taxing mentally and physically.  The concert was really good, even though it is quite difficult to hear ourselves outside with all the other city noises that go on.  We had quite a large audience, apparently bigger than last year, and many people asked if we were going to be there again tomorrow.  We will be on Sunday 17th from 6pm-8pm.  Tonight we have our end of term choir concert where we practice at Engadine.  The Uniting Church and it’ll be 7.15pm - 7.45pm and then nibbles and snacks afterwards.  It’s currently 36.5C outside so I really do hope that it cools down in the next 3 hours!!!

Creatively I have been doing quite a bit of slow stitching. I find that helps with my finger and hand stiffness.  Move it or lose it really is a thing.  I’ve been making Christmas presents for my family.  I’ve also been doing some more work on Spoonflower again, not quite designing new fabric designs for me but I have ideas. I’ve been researching and practicing different ways to do repeating seamless patterns. I also uploaded one of my designs in one of their design challenges and have had a number of people like it and then go onto my page and like other designs too.  That does make me feel happy people life my work.  Spoonflower ended up having a few months break with the radiation and its aftermath fallout.  I’ve also been working on a quilt project that has been made up entirely of half square triangles.  I was going to do pinwheels with the triangles but that ended up being thrown out and I really life what I have ended up with.  Today I got backing fabric and the wadding.  I just need to sew on a border, then I can pin it all together and then start quilting it.  I like to hand quilt. It doesn’t really take that long and it’s quite restful.  

I have had to be patient a lot with myself the last few weeks.  Acknowledge that sometimes I just need to lie down. Maybe not sleep but just lie and rest.  Sometimes I might listen to music, sometimes I’ll watching stitching or quilting videos to get ideas for my own projects.  Sometimes I’ll watch a movie or show I’ve already seen as that requires less brain power.  I have been persevering with my exercise classes, though last Saturday I just couldn’t have made it.  There was a high danger or either vomit or poo that would’ve interrupted the class.  Some people has asked me that now my treatments are over are things getting back to normal.  My treatments are ongoing, the “active” treatments are over at this point, surgeries, chemo, radiation, but there is 7-10 years of hormone therapy, monitoring, side effects, appointments, and so many more complex things that happen in life when cancer is involved.  What is normal?  That word means something different to each person who uses it.  For me it’s not a static word or state.  At this point I don’t like to think of normal. Often I hear people say “I wish things would go back to normal”.  Especially since the pandemic.  That is limiting in my mind.  You can’t go back, only forwards.  I’ll have a goal for the day, or even the hour, but if something happens and I don’t accomplish it then I have to be kind to myself and patient.