36. Appointments, Appointments, Appointments

This week has been a busy week.

Monday - Exercise class. I felt about 50%, maybe, when I went over to Lewis's at 1pm. On the stationary bike first for 5 mins. The more exercises I did the better I felt. Exercise is a powerful healer. We ended up doing the Nutbush dance twice, well, Sarah and I did it twice, though the 2nd time for me was not quite as bouncy. I went up to 5kg weights for skull crushers, little by little. I can tell that this exercise is good for getting the feeling back in my upper arm and armpit. My Centrelink Health Care Card arrived which means that the little bit I have to pay for anti-nausea tablets and steroids with my chemo have a discounted rate. I got an invoice from Slade Pharmacy for $80.10 but with the discount it was $64.70. It should be more of a discount next time as my Health Care Card only started on Jan 23rd and I started chemo on Jan 10th. Ross (Social Worker) called to say he has put in a referral for the pro bono legal team so I can get my will, enduring guardianship, power of attorney and advance care directive set up. I had planned on doing that this year anyway (when I had a job and money) but with cancer it is important to make sure everything is in order. Everyone should do it as well as you just don't know what is around the corner....like a bus! The referral might take a couple of weeks. That's ok, I'm busy!

Tuesday - Evie and Ange came up for a baking day. We made valentine cookies that were white and pink stripes. https://preppykitchen.com/valentine-cookies/ Half the batch of sugar cookies is left white and half is died pink. Roll them out, cut into strips, then swap strips of white and pink to make the stripes. I say that like it was simple, not quite. Ange and I probably should've put the dough back in the fridge to firm up more but with the help of some metal rulers it worked out well. We also went to Spotlight to get pink sanding sugar (for the pink stripes) and had lunch at the Loftus Cafe with Mither.

Wednesday - Look Good, Feel Better workshop (see previous post). I called up Kim (oncology nurse) because I was having some skin issues. I decided when I wrote this blog I would be truthful with symptoms I had, whatever and where ever they were. On Monday night I had been feeling a bit sore in the vulva area (I am pretty sure I can track it back to being on the stationary bike and either being sweaty, or wrong undies, or just it's so sensitive now to any type of pressure) and on Tuesday it was a bit worse and it felt like broken skin on my labia. I want to say like carpet burn. If you are wincing, yes, it is not nice. I knew that broken skin, especially in this area, it is very easy for infection to set in. In aged care this can happen when people wear pull ups all the time and don't get showered or changed often enough for frail skin. We use a barrier cream and I wanted to check which one would be best for me, sensitive skin issues and all. I use a zinc based sunscreen and Sudocream is a zinc based barrier cream. Also, I had been constipated on the weekend again (gah!) and it was worse than before. It was painful just sitting in a chair. I wanted to go, it was stuck. I didn't want to strain too much but when I finally went on Monday morning there was some blood when I wiped. Kim said to let Dr Michael know on Friday. I went up to the pharmacy and got some sudocream and boy did it make a difference. Tues and Wed I hadn't worn underwear cos it was too sore. It made me think of babies and nappy rash and how it helps them to not wear a nappy and to just crawl or run around with their naked bum out. I have a giggle visualising me doing that....not quite as cute as little baby bums.

Thursday - I had a massage with Carlie. I found some old undies that were loose around the legs and with the barrier cream it was much better. The massages definitely help the body to slow down and retune. After the massage it was seeing Peter, my optometrist. He wanted to check the fit of my new lens. I asked him where the black dot is meant to be because it spins around and more often than not is at 3 o'clock, as in middle of my eye on the outside. He tells me it should be 6 o'clock like my right lens. He has a look at the fit and says "you have a little piece of thread or something under your lens". Do I? I can't feel it. He takes a photo and yep, there is something there. I take my contact out, he gives it a bit of a clean and put it back in again. He goes through some different tests to see what my vision is like, it could be better but that is the game that is played to get it right for me. He needs to talk to the lab to figure out why it's not sitting in the right place. He also wants to see me again tomorrow. I tell him that when it is really hot and humid my vision is so much worse and the contacts spin out of place easier. He finds that comment interesting and hasn't heard of that before. I went to choir tonight as well. Hot night but we did some good work together. Harmonies are sounding really good.

Friday - 9am, OT appointment with Karen. She is going to measure the fluid in my arms for early lymphoedema prevention. It's in the Allied Health section of Sutherland Hospital. We go into a room, that sort of looks like it could also be the staff break room, and sit down at a table. She asks me some questions, height, weight, dominant hand (right, though I can also use my left for a lot of things). She puts some information into a tablet and then we go to the corner of the room which has a machine where I stand on it. There are two metal plates for each foot, make sure my heals are all the way on. My toes are right to the top. I wonder what happens for people who have really big feet (I take a size 12 ladies, mens 10, or European 43). Then I put my hands on some metal plates, it's about waist height for me. The tablet goes onto the machine and Karen presses start. It takes about 30-45seconds and then a horizontal line about 2cm thick appears on the screen. I'm at -2.5, right in the middle of the green section. There is also a yellow and a red section. I'm guessing I don't want to have a reading in that area. Karen says that it is my base line and each time I'm measured it should be within 6 of this reading. Or maybe she said 6.5. Anyway, it's a way to see if the fluid levels change and how much. We go back to the table and then she has a tape measure and she measures both arms. Around my knuckles, wrist, then every 10cm from my wrist up to my armpit. She has a pencil that she does little dashes at the 10cm marks. She also does my elbow. My right arm is a bit bigger than my left but not by much. She says seeing as I am right handed it makes sense. We go through more questions, we discuss my exercise, what I am doing and have done. She asks me to put my arm up to the ceiling, out of the side, hand behind my head and elbow out to the side. She is very happy with my mobility. I am to, I have worked hard to get my range back, it's not quite fully back but getting there. Maybe 98%. She'll see me again in 3 months.

Friday 1.45pm. Meeting Dr Michael (oncologist) for the first time. I like him, very different from Dr Man who was super calm and soft spoken. Bouncy, bubbly, quick rapid fired sentences. He says he is brutally honest. Good, I don't like it when people beat around the bush. We discuss my symptoms, I need to really figure out how to avoid constipation. I thought I was doing ok but the gut takes a beating with chemp. Prunes were mentioned. The parents have them so I need to add that to my shopping list. If movicol isn't working quick enough then I should look into something stronger. Poos are back to normal again but still a bit of blood. He says paw paw ointment should help. There is probably a small fissure. Keep an eye on it though so that it doesn't get worse. I ask about probiotics and he says they are a good idea but not while on the vicious chemo cycles because even good bacteria may become overgrown and bad when the gut is attacked so much at this stage. We can revisit with the weekly chemos. We discuss Persephone. He is not inclined to replace it, not so good to have a procedure at this time of the chemo journey. He doesn't want her used next Tuesday if there is not blood return, just incase she have moved again. Don't want to get this chemo under the skin. It would be "very very bad". Ok, guess it's a cannula again. He mentions putting in a PICC line and I immediately say no, dressings and sandpapered skin etc. That's why I got the port, to avoid that issue. He is going to leave Persephone up to the nurses starting from Chemo V onwards. We discuss my blog, he had a quick look and liked my writing style but unless I really want to him read it he says that I can have it as my own person sacred space. "Besides, you might want to bitch about me in it". I assured him that I wouldn't do that, besides, bitching about people behind their backs isn't nice. Chemo V is going to happen 3 weeks after Chemo IV. He says there is a lot of differing opinions about whether it should be 2 or 3 weeks but he likes 3 weeks. Ok, sure, it's a full time job this cancer thing, so an extra week where I might feel a bit better would be nice.

Friday 4pm. Saw Peter again. The left contact lens has spun around to 3 o'clock again. He takes a photo and says "The lab isn't going to believe me otherwise". He again checks my eye, no piece of thread under it this time, and says it looks fine for the fit. We check my vision again, with another few lens and some tweaking the astigmatism bit it may have to be changed. He'll talk to the lab though, figure out why it isn't staying in the 6 o'clock spot. The lens has a few months of guarantee on it so they can be changed without cost. He'll call me next week with the outcome.

A weekend of rest, as in nothing in my calendar. Monday it'll be blood test and seeing Paula (psychologist) before Chemo IV on Tuesday.