64. I'm still here

The word “still” is an interesting word. In the context I’m using it is “I AM here”, even with all that has happened in the last weeks and months. However, I need to be still in the context of calm, smooth, unmoving, peaceful. I can honestly say the last 4-6 weeks have been some of the worst in my entire life. Not only was I going through my treatments but there was a LOT of family stresses that meant my core support system broke. It wasn’t anything that could really have been prevented and it just happened to explode, or maybe implode, all at the same time. Someone said to me “aren’t you a glass half full person” and I said “what glass? Mine is shattered to pieces on the ground”.

I’ve finished my radiotherapy, last dose was on September 5th. It doesn’t mean that everything goes back to normal though. The radiation is still in my system. There is that word again. The radiation keeps on accumulating for another couple of weeks. The fatigue is still here. Not quite as bad as it was but still making me need a rest in the afternoons. My skin has got an interesting spotty look to it in patches. It doesn’t itch thank goodness! The skin under my arm and the surrounding areas are a deep red or black and the skin is peeling. It is painful like a sunburn and hot too. I keep up with the moisturiser to keep the skin from breaking. It’s hard to do in this heat. Sydney is having a heatwave. We have temperatures that are hot even for the middle of summer and it’s the start of spring. What is Mother Nature going to throw at us next?

Week 3 after my last radiation dose I should start to feel a bit better and week 4 better again. Hopefully the fatigue will be receding even more. It’s sort of hard to know which symptoms to peg on the radiation and which to the hormone therapy. Both can cause fatigue.

Both can also cause sleep disturbances. I haven’t been sleeping well all year but the last month or so it’s been waking up every hour or so, struggling to get to sleep and struggling to get back to sleep even though I’m exhausted. Sometimes I wake up because I need to pee, sometimes I’m hot, sometimes I’m a big sweat heap and feel like I’ve been thrown into a sauna. Which pillow is going to be comfortable tonight? I have 3 different ones. Which bed covering will be needed? I have 3 different weights depending on the hour. It’s very disturbing and I LOVE my sleep. Always have. I don’t do well after one night of restless sleep let alone months on end.

I had an appointment with Paula last week. Most of the hour I cried. She said my nervous system is in hyperdrive and I need to do simple things that soothe the senses. Do minimal things that calm me. Take time to focus on my breath. Find ways to enjoy things again. Get out of the “war zone” feeling.

I’ve been having times where it’s felt like my heart is going to burst out of my chest and up into my throat. It could be anxiety and panic attacks or it might not be. I’ll mention it at my next oncology appointment in case it’s a side effect of treatments. The last week I haven’t had as many as I did in August.

Friends have offered to help out which is great, I just don’t have the energy to even know what will help a lot of the time. I need to be still, still the nervous system. I remind myself to do that multiple times a day. Being around people has always been emotionally tiring for me. I need time to recharge after social events. That was part of the hard part recently, I didn’t have the down time I need. Radiation was every day with weekends off. That was a good 2 1/2 to 3 hours out of my day. I didn’t really have weekends off either there was so much going on.

Choir has been calming. It’s good because you have to concentrate on breath. The harmonies in the songs we are singing are calming. We are starting to work on our Christmas pieces again. Our choir has been chosen to perform again in the city as part of the Festival of Sydney in December.

For my birthday my family gave me money and I am going to buy two recorders. An alto and a tenor. I have chosen to purchase the Aulos brand as a number of people have recommended them to me. I would love to be able to buy wooden ones but they are $1,500-$2,500 (low range) instead of $100-$200 for the resin recorders. I enjoy playing the recorder and my flutes (I have a metal one and a rosewood Irish one). These also focus on breath so will help to calm, to still the nervous system.

I’ve been writing this whilst waiting for my car to get new tyres. They were borderline illegal 😵‍💫😬. Mither and Pither are lending me the money as I can afford them at the moment. This morning our state member for parliament was at a local cafe. Jenny Ware. I stopped in for 15 mins to talk to her about how detrimental it is for the Jobseeker rate to be almost $150 a week below the poverty line. We also talked about dementia care and aged care and the cost of living crisis. I don’t have much confidence in either major political party but she listened and I could see she had some empathy for more positive changes in aged care. I don’t think she considers “people on welfare” as a top priority though. I debated whether or not talking to her would be a good idea but decided if I didn’t I’d just go over and over it in my head anyway and that wasn’t soothing either. It was a good decision.

Another hot flush! 11.04am. I’m keeping a diary of when they happen and what was going on just before. The data is interesting, sometimes it’s less than an hour between them for a few hours and then I don’t get one for 3 or 4 hours. I haven’t really figured out if there is anything that sets them off. You’d think I’d have more with this hot hot weather but I’ve had less. Maybe because the humidity is so low, it’s in the 20% range. Maybe because I’ve been drinking a lot more iced water instead of just water. Sometimes I can get dizzy when I get a hot flush. Not a spinning type of dizzy, like the world shifts left or right sharply and then my head slowly goes back to centre like it’s moving through thick syrup.

It’s possible that I get less hot flushes in the hours after I do an exercise class. I definitely notice I feel less fatigue after. I feel tired after a class but it’s a different tired feel to the normal fatigue. Last Friday I did an hour class with an exercise physiologist at Restore clinic. I did different movements than I do at the Lewis classes and I felt good after as well. I have 6 free classes there for my next 5 Friday’s I’ll be going.

I find it interesting that another definition of still is an apparatus for distilling alcohol, like whisky. The alcohol has to be still for a long time to be the best flavour. I need to distill all the things that calm me. Going back to the basic senses, the simple things.