66. Some results, some questions, some fun

The last couple of weeks I have slowly felt a little bit better here and there. Not a general bit each day, it's gone up and down, but the overall has been up. Today the skin on my right side is almost without scabs. Just 3 small places on my scar and a few little pea sized dots above my bottom ribs, below where my nipple would've been, well, depending on if the boobs were constrained in a bra or not... Still a little sore and my skin is still a bit hot in some areas but much much MUCH better than the feralness that it was. I've been going to get skin checks by the nurses every Tuesday and on the last one the nurse said that it should be fine within the week unless something drastic happens and then to come in again. No more drastic!! Took much of the drastic this year. I've been putting the solosite gel on the raw bits a couple of times a day and Friday was the first day I didn't put the dressings on as well. I was very glad not to have to wear the crop top thing to hold the dressings in place as it made me extra sensitive to the heat on top of my already oversensitivity to it. Especially at night. It's nice to feel free again without having something binding my chest. The nurse loaded me up with dressings and gel which I really won't need. She said I could bring back the stuff I don't use. Well, I'll only do that if I'll already be going up there anyway. They'll come in handy I'm sure.

My cough is mostly gone, every now and again I do have a cough and I do feel like I have something more in the lungs to cough up and sometimes I do that. I don't have the feeling of a weight on my chest stopping me from taking a deep breath that I did. The second round of antibiotics must've done their job. At choir practice I have been coughing more but I also feel that the singing is good exercise for the lungs and diaphragm again. We are learning our Christmas repertoire and some are more the usual carols people know but some are medieval ones and in different languages. Beautiful harmonies. I also will be playing my recorders for some of the songs. I only just felt like I could play them a few days ago for the first time without coughing after every few notes. I've been learning how to play both the alto and the tenor recorders. Most of the main notes I know but it's learning the fingering for the accidentals that I need to add to my muscle memory. It's good for the brain changing from the alto in the key of F to the tenor in the key of C. What I mean by that is if you have all your fingers down on the alto you get an F and all fingers down on the tenor you get a C. So you use the same fingers to get notes but you get a different pitch depending on which recorder. So looking at the music score the brain has to switch its muscle memory neurons. A very good exercise to give you a resilient brain and delay the impact of dementia if you get one of the 130+ diseases that cause dementia. The sound of the recorders is very nice, especially the tenor. Mellow and restful. Not at all like the soprano ones that can be so high and piercing. I always feel that if the soprano and sopranino (higher than the soprano) recorder are not being played in a performance you need to practice them out in a paddock, like the bag pipes.

My heart palpitations and racing heart rate are less than they were. I seem to get them at night more, especially if I'm lying on my side, the left more than the right. I told the nurses that when I had the heart echo and the 24 hour monitor. I'm not getting dizzy when I bend over to pick up things from the floor and it takes me doing harder cardio things to get me breathless instead of just walking up the front path or our stairs at home. I had the heart echo last Monday 16th. It was at St George Private Hospital this time. I parked at the public hospital carpark like usual so I could get my 3 hours free and then walked the 5 mins to the public hospital. Up to level 4 and I was first appointment at 9am. I get called into the room and the technician says to take off my top and bra. "Oh, no bra, that's convenient". Yes, yes it is! I mention that she has it easier than the lady who did my other two echoes because she doesn't have to borrow through the fleshy canal between my two boobs to get the ultrasound wand to my sternum. Lying on my left side had meant the right boob was on top of the left boob and the left boob was trying to melt off the side of the bed. So this time it was much easier to find the sternum and surrounds. She said she couldn't see any major structural issues but all the measurements will be cross checked against my other two scans. She had to put the ultrasound wand on my left side to check that side of the heart and it was right along my scar. It hurt a bit but wasn't too bad.

After the echo a nurse came in to put the 24 hour monitor on. She had some alcohol wipes and cleaned just under my ribs and to the left of my smiley emoji scar on the left side, just under my ribs to the left of my sternum, right side under my ribs middle of my right abdomen and above my collarbone on my right. She then had a little square of green scotcbrite - well it looked like the stuff you buy to clean baked on food in your dishes. She very gently scraped my skin where she has rubbed with the alcohol. After that she put on the sticky pad things that are the size of a large stamp and then attached leads to them. She then taped them on too to make sure they wouldn't come off. The leads then were attached to a rectangular box a similar size to a white board marker eraser but much heavier. It was powered by one AA battery. She showed me where there was a little green light blinking every few seconds to show that it was recording. This was clipped on a lanyard around my neck. I hate things around my neck. I don't wear necklaces often, I don't really like scarves wrapped around. I don't like high neck tops. When I was trying to sleep I unclipped it and attached it to the crop top straps as I kept feeling like I was being strangled. She wanted me to do everything I normally do and to do the things that make me dizzy and breathless. I could do my exercise class as long as I didn't get too sweaty so that the leads slid off. Well, just sitting down I can sweat like crazy with the hot flushes and the tape on the further left side had started to come off by the time I got home. I had some left over tape from my drains dressings so put some of that one to hold it. I did my exercise class which was awkward with the monitor. When on the stationary bike it was bouncing around. When I was doing donkey kicks (on all fours and you kick up your legs to the sky) it was flapping around and dangling. A lady I train with said it was like a penis without undies to keep it contained. Not that I would really know what that would be like but it seems a plausible comparison.

After the heart echo and monitor on and my exercise class I had a GP appointment. My 4th Zoladex injection, plus the results from the sputum test and blood test. I had the injection and it bled a little this time. She said I might get a bit of a bruise. I had flash backs to the "you might get a bruise the size of a 50c piece" from my boob biopsy almost a year ago. True to my past stories I ended up with a bruise the size a large avocado the next day. The pattern at the start reminded me of the pattern on raw salmon sushi. It ended up going a solid black and a bit bigger again. It is currently a black/red/brown shade with a yellow/green hue surrounded it like it is starting to moulder. A mouldering halo. It's say it's work $3.50 at least. My sputum test shows that there was a low growth of commensals. I looked that up and it's a bacteria that we all have on our skin but it doesn't make humans sick. Hmmm, my immune system is probably still out of whack from the chemo. On my blood test my neutrophil count was high and my lymphocyte count was low. My liver function was also a bit high. My GP was thinking that it could be linked me me fighting off my chest infection and it showed my immune system was stressed. Well, yes, my radiation skin would be considered stress. She says that Dr Julia will get the results and perhaps might order other blood test when I see her on Nov 3rd to see how the results are after a month.

On the Tuesday I went back to get the monitor off and then had a skin check again after. It was good I could work the two appointments in together closely. The lady who took the monitor off said that if there was anything major then the doctor would call Dr Julia to tell her so if I didn't hear by Friday then there wasn't anything urgent. If there was something found that wasn't urgent but was of note then the results would be sent with an alert and Dr Julia could call me in earlier if she felt like she needed to. I haven't heard anything yet. After the skin check I drove back via Sutherland Hospital, having flash backs to when I was having radiation and then going and visiting Pither when he was in there. My medical certificate was being extended for 3 months with centrelink and I needed to pick it up at the reception at the oncology clinic. I did that and then drove to Sutherland and went to Centrelink and got my form uploaded. My first form was running out on Nov 1st and my new form stated that Feb 1st would be extended to. However, the guy who uploaded it said that the new one would run out on Jan 9th as it can only be extended in lots of 3 months. I was a bit confused as it would be 3 months after my old one ran out but the new form was filled out on Oct 11th and so that's the new start date they system took. Eye roll!! I wasn't going to argue with the guy though and I do hope that I'll be able to either get some interviews by then or have a part time job. Being able to physically, mentally and emotionally work full time going to take a few more months into 2024 I think.

I saw Dr Lucinda on Friday 13th. She was checking in with me about how my skin was going and agreed that it was much better. She had a student with her who was training to be a GP. He was quite young and after my permission was given he got to see what bilateral mastectomy scars look and feel like. He also saw the scar Persephone has left. Lucinda pointed out the tattoos I got for radiation and showed him how to check for lumps in the lymph nodes under my arms. Even though I have had a clearance on the right she says that they are still checked in case there is a random that was missed. She discussed with him how he would do a breast check, if there were boobs, but also what to do for someone like me who doesn't have any. Seeing as my skin was still quite raw she didn't touch me but pointed out what to do to check the chest wall. She pointed out my drain scars and mentioned that in my notes it showed that I got hives and had an allergic reaction to the silicon tubes. He was interested in that and wrote down some notes. Lucinda said that he was lucky I was in today as it would be rare for a student to see how bilateral mastectomy scars look in person and not from videos or photos. Let's hope he gets full marks on that part of the test. I've booked in to see her again at the end of April. Lucinda was saying that I'll be seeing her once a year for the next two or three years and it was good to make them about 3 months away from my other specialist appointments with Dr Inder and Dr Julia.

Some questions I have for when I got back to Dr Julia is about the zoladex injections. I noticed this time around that the week after I got them all my joints got super painful, especially my hips down. My knees, the left in particular, have been very stiff and painful. My right foot and ankle as well. The pain seems to be subsiding a bit today. I'll take note with the next injection if the same thing happen. It's a slow release pellet but maybe it's quicker at the start? Or maybe the bleeding make it worse? I do remember having similar pain before from the first one. Maybe the hotter weather makes it worse? I also noticed that my hot flushes were more frequent and longer last week.

Even though I have had painful joints I still have gone to my exercise classes, even though a couple of times I really just wanted to lie in bed. They do feel less stiff and painful after the class so I do know they are beneficial. I've said it before but there is a huge mental impact to this cancer recovery stuff. I am hoping that the heart tests come back ok so that I can start to increase my weights and cardio again like I was doing before radiation started. I would like to run again. I miss running. I am going to really enjoy not having boobs when I run too.

Update on the peripheral neuropathy and enteric neuropathy. For my fingers I have a very slight reduction in the sensation at the very tips of my fingers. My toes are less numb and I have been getting the hot shooting pains I got in my fingers when they started to get less numb. My little toes (which have been number from about February) are starting to almost feel like they want to join the world of sensation again. Hunger, not really getting the same hunger signals like I used to but I think that I am starting to learn the new signals that my body is telling me to feel hunger and when I am full. Hard to explain but it's more a head response than a gut/tummy response. Any hair I lost is fully back. I have decided that I really like my head hair short so am going to keep it in a buzz cut around a number 6 or an 8.

I hadn't done too much sewing or creative stuff in the last couple of months. I really had to struggle to even do the basics of life but I am getting back to feeling more inspired again. Slowing getting my hexagons sewed together and have done some slow stitching projects and have more ideas bubbling up each day. If you don't know what slow stitching is just put it into YouTube and see. Sometimes people says slow sewing. It's very relaxing and another way to use up little scraps of fabric.

Next week we are having air conditioning put in the house and then solar panels. I am very excited to be able to banish the humidity from my room, especially at night. I am hoping that it will help with my sleep. I haven't really had a stretch of sleep that is longer than 3 hours since before I started radiation. It's not good to only get short bursts. The brain needs to have longer than 3 hours to rejuvenate, clean out the daily junk, process memories and dream. I am hoping that my sleep will start to settle down more now that my skin is almost better and I can start to get a bit of a routine in my life again.