65. It all started with a cough...

For those of you living in Sydney you might remember a few weeks ago when there was a bunch of hazard reduction burns that were done. The smoke was so thick and heavy and lasted for a few days. Sydney had the worst air quality in the world. It affected me quite a bit and I coughed on and off after that. The cough stuck around like an annoying reminder of the smoke but also I was reminded of being in hospital and how sick I got after my 4th chemo dose. The cough got worse and I also ended up getting a cold (Sun 24th) For a couple of days I didn't do much apart from sleep, lie in bed and watch Netflix. I had my appointment with Paula over the phone on the Mon. I definitely needed to chat with her to remind me how to pull myself out of the deep blackness that is still threatening to overtake me at times these last couple of months. My chest was getting tight again, more memories of my time in hospital and not being able to catch my breath. I was hoping that my immune system would be able to handle it without any ambulance trips.

The day after my last blog post the skin in my right armpit started to go a really deep red/black colour and was starting to peel. It was sore, like a really bad burn would feel like. Some of it didn't hurt as it was in an area where it is still numb from my first surgery. It spread though, like some insidious dark cloud, or mould growing. The skin thickened and got tight. It hurt more, it started to crack and bleed a bit. It was now from my armpit down to my scar. If I hovered my hand over the area it was about that size. I called up Dr Lucinda to ask her about it. She said that it sounds normal but to come in tomorrow (Tues 26th) for a skin check.

The skin check was at St George Cancer Clinic where I'd had the radiation. I was feeling better from my cold but still the cough was hanging around. The appointment was at 10am and I did my usual park in the carpark, validate my parking ticket so I could get 3 hours for free, and go and check in. I only had to wait about 15 mins and the nurse came and got me. She had a look at my skin and tutted, clicking her tongue behind her teeth. "Oh yes, that looks very sore. I'll put some saline cloths on it to soak and will get Lucinda to have a look." About 10 mins later Lucinda came and had a look. She peered at my skin, which looked like some flesh eating virus had attacked it. "Yes, that is normal but at the severe end of normal. The nurses can get you sorted with a special cream and send you home with dressings and it'll start to be better soon." The nurse came back and she said I would need to use Flamazine cream and that Lucinda needed to write a prescription for it.

The tubes were 50g. The nurse took out a long mesh dressing, about 30cm x 10cm or there about. She squeezed about what looked like the entire tube (turned out it was about 2/3 of the tube) onto the dressing and then smoothed it out with a wooden paddle pop stick. Those wooden sticks the doctors push down on your tongue and you say ahhhh. She then put the dressing with the cream onto my skin. It was cold and felt nice, stung a bit and tingled. She then covered the skin that wasn't all gross with another cream, she says I can use the MooGoo cream at home, and then two big padded dressings over the top of all the red bits. She couldn't use any tape to keep the dressings in place with my skin so sensitive, instead there was a bit tube sock type thing that she cut some side slits in it. She put it over my head like a tight top, my arms going through the slits like a sleeveless top. It wasn't cut quite long enough so it rolled up sometimes. I had some tube top things at home and wore them over the top to stop the rolling. I am told I need to change the dressing and cream morning and evening after a shower for a week. I'd have another skin check next Tues. On the way home I stopped in at the pharmacy to pick up the Flamazine cream, 3 tubes. I'm told that the PBS will only pay for one tube per script. If I had 3 scripts of one tube each it would be ok. So instead of $7.30 per tube it would be $22.50 per tube. The nurse had given me an extra tube and the remainder of the one she had almost emptied. I called up Lucinda and she said she could get her registrar to write the separate ones for me and I could pick them up tomorrow.

Wednesday I went into the city for my sister Michelle's open day for her Artful classes for people living with dementia at the MCA. It was a wonderful gathering, so amazing to see all the artworks people had done over the last 6 weeks and to see how happy them and their care partners were. During the speeches I sat next to a gentleman and his wife who were interested in doing the next sessions. They had been hesitant at the start but by the end were very enthusiastic. I met up with a friend for lunch and we had a catch up and then walked from The Rocks back to Central station. It's not that far a walk, maybe 3-4kms, but I was very tired and getting breathless by the time I got to the train station. I felt like I'd walked 20kms. When I got back to Sutherland I called the hospital to see if the scripts were ready to pick up. They weren't and I was glad as I really didn't have the energy or will power to drive to pick them up. I did that on Thurs morning instead.

Being sick AND the radiation skin going nuts wasn't good for my immune system. By Thurs evening the glands in my throat on my right side were swollen and my throat was sore and it was hard to swallow. My cough was worse and my chest tighter. I was coughing up yellow gunk. I started to get worried I'd have a repeat of the ambulance trips from earlier in the year. I did consider calling 000 a couple of times that night. I didn't and on Fri made an appointment with a GP. He seemed to think that I had a chest infection and wrote a script for roxithromycin 150mg. Twice a day for 5 days. He was a bit confused about the swollen glands and sore throat, it being only on the right side. He also said that the smoke from the hazard reduction burns had started to irritate my lungs and then with the skin it started a downward cascade for my immune system.

The GP didn't think that I was contagious. I asked as Sat was Zaeli's 4th birthday party. It was outside, down at the park on the boatshed side of the Royal National Park. It was very fun and nice to see people. I ended up doing the cooking on the BBQ, snags and onions. I liked doing it, it was under cover out of the sun and I wasn't too close to people all the time. I made it about 4 hours before I could tell I was getting too tired and needed to go have a sleep. My cough was a bit better, less tight in the chest, but my throat was so sore I had to take panadol.

Sunday it was HOT! 🥵 My cough was better again but my throat and glands weren't. I did some reading on the side effects of Flamazine and there it is, rare but serious side effects could be sore throat and swollen glands. Typical me! I'm getting rather tired of being part of the rare side effects club all the time. I made the choice not to put the Flamazine cream on and just used the MooGoo on the less juicy and raw bits. I put the mesh dressing, padded dressing and my tube top. I'd stopped using the tube one I got at the hospital as it kept rolling up even worse. My skin is looking much better. There is a long line under my scar now a dark red colour with some blisters. Not as bad looking as what above the scar had looked though! I went to church, driving the parents up too. Julian was preaching and he's always good to listen to and to visit with.

Another things that has been happening on and off since the end of August is I have been having heart palpitations and my heart has felt like it's been racing. These episodes have been increasing over the weeks. It feels quite disconcerting. Like I keep getting scared out of the blue and adrenaline floods through my body. Is it the stress and anxiety of everything that has been happening? One night I considered calling an ambulance again but then it did subside and I was able to go back to sleep.

Skin check again on Tues 3rd. Asked the nurse about the swollen glands and sore throat and she at first didn't think it was a thing but then said she might have remembered one other person that may have had the same reaction. I had brought in two tubes I hadn't opened and gave them to her. She said the skin it much better and would do ok with some gel, Solosite, and to do a similar treatment plan for another week and come back on Tues again. This time she wants it just once a day and to soak the skin in a saline solution for 15mins before my shower. Then to do the dressings. My cough is better, the gunk being coughed up is clear/white and not yellow anymore. My glands feel about half as swollen and my throat isn't as sore. I do have a headache though, it's been hanging around too, often painful enough to take some panadol so I can function and/or sleep. I don't like to take pain killers much so you can tell how bad it's been.

I did do some sewing again this week. I really haven't felt like doing much of my creative outlets for weeks. The fatigue, sickness, skin etc drained the strength and the will to do anything more than just survive most of the time. I made some fabric coasters out of scraps of fabric that were off cuts from quilts and the hexagons. I also have done some slow stitching panels too. They are great. Doesn't need much brain power to do them and I still get the benefit of creating. You don't have to plan much, just place different scraps down and then sew. YouTube has a lot of videos if you just search slow stitching. It's like collage but with fabric. I also like that it can use up the tiny little pieces that I normally would have throw out.

Wed my throat and glands are a bit better, my cough about the same. I'd finished the antibiotics last night. My racing hear and palpitations are more frequent and I often get dizzy walking up the stairs at home. My headache is bad. I did sew some hexagons together in the morning but had a nap in the afternoon. I wanted to go to the Breast Cancer support group. It meets once a month. There is always a breast nurse there and I wanted to ask her about the heart stuff. Was it connected to the hormone therapy? She seemed to think that if it was every so often it was more an anxiety thing but seeing as mine was increasing it needed investigating. I told her I was seeing Dr Julia on Fri and she said good. If I wasn't then she would have liked me to go to the GP or to emergency. Even though I was hoping that she would say something that assuage my fears I did feel better that it wasn't all in my head, or heart really, and that I do need to get it looked at more closely.

Friday, today. I'd tried to sleep last night but wasn't doing very good at it and around midnight I could feel my heart racing. I counted my pulse for a minute and it was 114. That's way too high for someone who has been lying down for almost 2 hours trying to sleep. My head was really sore and panadol didn't really take the edge off at all. Do I call an ambulance? Do I wait for my appointment with Dr Julia in 11 hours time? Is my headache linked to my cough? It's getting worse again and I'm back to coughing up yellow gunk. My throat and glands haven't totally gone away, they are still a bit tender but no worse.

Mither come with me to my appointment and we have to wait about 10 mins. Dr Julia asks me how I've been so I rattle off what's happened. She doesn't think that heart stuff is to do with the hormone therapy and does think that it needs investigating. She wants me to have another heart echo (last was in March after I was sick in hospital) and also to wear a heart monitor for 24 hours as I have been getting multiple palpitations each day. She says sometimes the chemo can affect the heart. I remember Dr Michael saying that too. She also wants me to take another course of the antibiotics but if they don't fully get rid of what I have after this then to check in with GP about it. I had a full blood test as well as a sputum test after my appointment. She wanted to see what would grow incase it is a bug that is immune to the antibiotics I'm on. We discussed extending my medical certificate for Centrelink but she didn't have the right form. I called KIm and she asked me to get the number from the one I had before. I did that and sent it to her. The current certificate will run out at the end of the month and then Jobseeker will revert back to me having to apply for a huge amount of jobs each week to keep getting payments. I'll see Dr Julia again in a month and then we will talk about the infusions and the new medication from the Natalee trial. She said that it's a lot of paperwork anyway and maybe in a month the medication will be on the PBS. She mentioned $5,000 a month at the moment but with the paperwork she would do it would be free. This is the tablet once a day for 3 weeks and then a week off. It will boost the zoladex and letrozole tablets effectiveness. I'm glad I can wait a month before starting something new. Too much is going on at the moment and my body is struggling enough as it is!

I called up to get an appointment for the echo and the clinic at Miranda didn't have an appointment until Nov 3rd but gave me the number for the St George clinic. Oct 16th at 9am for the echo and attaching the 24hr device. Then come back again around the same time on Tues to remove the device. I'm hoping that now I have the appointments in place that my symptoms will magically get better. Isn't that how it's meant to work?