21. First Chemo Treatment

January 10th. First chemotherapy today. I didn't sleep well the night before. Combination of a few things. The fact that I had to sleep on my back again due to the port incisions hurting too much to sleep on my left side. I did take a couple of panadol which helped a bit. My right side is still not quite there yet for lying on for extended periods. I still had drugs in my system from the port operation so they probably didn't help either. I knew I had to get up early to go to the hospital and if I know I have to be up before 10am I don't sleep well and this was 6.30am. Apprehension about what to expect from the day also was probably weighing on my mind. None of the above bodes well for a restful night. I had to do a RAT (rapid antigen test) for covid to make sure it was negative. I have to do that before each chemo treatment. Mine was negative which was good.

Jason (brother-in-law) picked me up just after 7.10am and dropped me at Sutherland Hospital on his way to work. I was a bit early so went to the cafe and got a bacon and egg roll. Who knows when I might be able to stomach that again. Texted with a friend in the USA while in the cafe and then made my way to the oncology department for 8am start. Some forms to fill out and sign and then Nurse Eileen weighed me, took my blood pressure (142.82 today - nervous!?!) and oxygen levels. Then she went over what drugs they were giving me today. Doxorubicin (dox-oh-roo-bi-sin) which is into the vein via a drip and Cyclophosphamide (SYE-kloe-FOS-fa-mide) which is in a big fat syringe and looks like raspberry cordial which the nurse has to push through the cannula with a saline drip very slowly and it take 15 mins. She then went through all the side effects that may or may not happen. There is a HUGE list and I won't go through them here but you can be sure I'll let you know which ones I get. I also had 3 Dexamethasone tablets which help with inflammation, it's a steroid which can also calm the immune system. I also had one capsule (not sure what that was called, have to check) which was a slow release anti nausea tablet. That's good, I hate feeling sick and I even feel sick when other people are sick or even talking about it so lets leave that one alone quick smart! Eileen also gives me a 'red card' which has all my details on it and if I have to call an ambulance or go to emergency then I get sent through straight away as I'm now a priority patient. Let's hope that one gathers dust! She also gives me a referral for a blood test. The day before each chemo I have to have a blood test. Good thing I'll be able to use the port for that next time.

I got through into another room (about 9.30am) and sit in a comfy chair where you can recline and put your feet up. There are tray tablets on each side of the arm rests. Good set up for next time, I plan to do some hand quilting. Eileen puts a torniqure on the upper park of my left arm to see what veins might be good to use. Can't use the one they used the day before for the port operation. She goes and gets a hot towel and covers my arm to help. She isn't sure which vein would work best so goes to get someone to help. It'll be nice when I can use the port! Nurse Jasmine puts a cannula in my arm just before 10am, into the side of my wrist, on my thumb side. It's a deep vein and she says "Sorry I have to chase it, clench your teeth, deep breaths, curl your toes, whatever works". Yeah, that bloody hurt! Anyway, it's in and all taped into place. She attached a bag of saline and says Eileen will be back with the Cyclophosphamide. Eileen and I have a chat while she slowly pushes the drug into me. She has a nice Irish accent and reminds me of my visits to Ireland. I used to go a lot when I lived in Scotland as Ryan Air had a deal where they had flights for 1p, yep, one penny. With taxes it worked out to be about 15 pounds round trip. Glasgow to Shannon and then a bus ride up to Galway. I love Galway and I bought my rosewood Irish flute there which I play sometimes in the medieval choir I am in.

Kim - who is my main contact for any help I need - came and chatted for me for about a half hour. She got a run down how things have gone since my operation. We discussed the tight 'cord' feeling I can get in my right arm, armpit and boob area and she gave me some extra exercises to do to stretch it out more. She also said she would send off the referral to Karen the OT who will measure my arm every 3 months to check for early signs of possible lymphoedema. About 5%-10% of people may get it. Hope it's not me! We discussed an oncology & lymphoedema clinic in Miranda and how the GP can give me 5 free referrals to use there for physio, yoga or other support classes. Kim also mentioned that there is a grant in place so I may end up getting some other free or subsidised classes too. She also would send off referrals to the dietician, social worker and psychologist. They are included in the treatment plan through Medicare (which is the Australian national health service). Kim asked about my job and so I said I hadn't heard back yet as to what I will be able to do and she said the social worker can talk to me about accessing emergency funds for essential bills and food shopping. I am exceedingly grateful to live in a country where there is so much assistance available!!!

I had brought a book which my cousin Naomi has lent me. It's called The Thursday Murder Club and it's about some people who live in and Aged Care Home in the UK and are trying to figure out who murdered someone in their town. I had started it on the flight up to Narrabri but hadn't read any since. I managed about 4 pages all up as I had lots and lots of text messages from friends and family checking in and also a phone call from Shell. Thanks everyone that was nice having so much support from you all. Also, lots of interruptions from nurses. They said it was more chaotic today as they are still playing catch up from people who missed treatments due to holidays and public holidays over the Christmas/New Year break.

The Doxorubicin takes about 2 hours and I was done by noon. Ange came to pick me up and I was quite hungry by this time. We go to cafe loftus and I get their burger with the lot which I really like. Unfortunately there is a potato shortage (due to the floods) so the usual beer battered hot chips (which are amazing) weren't available so I had just regular ones which were still nice. I hadn't been to the cafe for a couple of months so it was nice to go again. It was also nice to have some sister time. I also got a Bundaberg Ginger Beer, the nurses said that it's the best to help with any nausea as it has real ginger pieces in it. It's also delicious. When I lived in Pitlochry in Scotland I was so excited when I saw my favourite Deli (called Food For Thought) started stocking it. I remember saying "Oh I love this drink" and Alec who worked there said dryly "You must be Australian, I've had a few others this week who were as excited as you are". Alec made the best sandwiches. He used bread that was baked that morning, nice brown wholesome bread, and local cheeses, fermented goods, cured meats, local fresh salads, local sauces. My mouth is watering just thinking of them.

By this time it was almost 1pm and their were side effects happening. The top of my feet were a bit puffy. You know how babies have that cute little puffy feet look - not so cute on a 45 year old. I lay on my back with my legs up the wall and it did go down, mostly. My right foot a little longer but it had that chair seat smash it 8 months ago and isn't 100% yet. Well, another side effect was my teeth were maybe a bit numb. When I had endone after my operation they were super numb, well, my whole face was. This was about 10% of how that felt. I had some hot flushes too, head to feet and back up again. I had those with the pfizer covid vaccine as well. Probably my immune system saying "What the fuck have you done to me?"

Around 2.30pm Eileen calls me. VERY apologetic but she says she forgot one of my doses. The big syringe was actually only half a dose, I needed two of them. Whoops! I had seen her and Jasmine checking off the list before I had gone. 1 dose = 2 syringes. That was the confusion. Luckily Ange was still here so she dropped me at the hospital around 3pm. Nurse Donna had to put another cannula in. She couldn't use the same spot so she went up my arm about half way to my elbow. Stuck in the needle, nope, not working there. She moved about 3cm inwards on my arm and got a vein there, that was a bit painful but not like the other one in the morning way. I have ended up with a bit of a bruise for the one Donna did, like someone had stuck their finger really hard on my arm. Jasmine was floating around and we chatted for a bit while Donna got the 2nd syringe going. I said April was a bit sad she couldn't come to the hospital with me so Jasmine made a chicken head out of a blue glove that she blew up and drew a face on. It ended up with Evie as April and Ash were already picked up by the time I got home. When Donna was about to finish up, Jasmine came back with a big bag of chocolates, bowing in front of me and holding them out. "We are exceedingly mortified you have to come back today, please take these offerings as our apology". She also had some more that she offered around to everyone else who was still getting their treatments. One lady had already had her treatment started when I got there in the morning and she left just before I did the second time. That is a long day for her. Ange was parked not far away so she came and picked me up and we drove home.

Around 7pm I had a bit of a headache, maybe it was my eyes. It felt like an eye headache. I have noticed the last few weeks that they aren't as happy as they should be. My Optometrist Peter did say I need new contacts and a new prescription in the first few months this year. I'll see him tomorrow as I am taking Mither to her appointment. I might book in to see him in a week and start that ball rolling too.

Mither was doing some cooking and I was watching the 7pm ABC news. The parents sat beside me, Pither on my right and Mither on my left. My tummy didn't quite like the food smells so I decided to vacate the upstairs and go and lie down for a bit in my room downstairs. Fan on, that helps. I considered taking the anti-nausea tablets they had given me if it got worse. I listened to some Hans Zimmer for an hour or so and then decided I should just go to sleep. It wasn't getting worse but any thought of food set it off again. My knee bones were a bit achy, like I'd gone on a long bush walk all day. Mither had found some vomit bags for me, just in case, and so by 9pm I was in bed. I slept for 12 hours, only waking up twice to pee and have a drink. Very thirsty! The downstairs toilet has been allocated as the 'chemo dunny'. The chemicals can come out in wee and poo and so it's best if I have my own toilet as the chemicals can aerosol when it flushes.

So, first treatment down. Next one is in two weeks on January 24th. I see Dr Man again on the 20th. He has also asked me to text him every two days with how I'm going. I printed out a calendar for the parents so they can know what is happening when. It's almost a full time job!