13. Flowing

The Retreat Weekend. Twice a year a group of women get together to meet up for a relaxing weekend, some spiritual content, some charity focused activity, board games, talking, supporting, loving, kindness and calm. There are some women who come each time but we always have a few others who come every so often or new people. We had 8 people in person this time and 4 people join on zoom a few times. I wasn't that comfortable having the drain in, trying to find a comfortable place to sit was a challenge more often than not. No leakages happened, I changed the bag ok myself (160ml) on Saturday but then the bellows started to do the same thing as the other one. Crap......wait, if I lock off the bag part the bellows still collects ok and the suction works. Phew, I can deal with that then, just empty into the bag every so often when the bellows fills up. I felt supported by the ladies that attended and did manage to do a presentation on Saturday morning on "Why we think the way we do". It was a pared down version of my Living and Working with Cultural Diversity class. I had done almost three quarters of the powerpoint prior to my diagnosis but did a bit of a rush job on Friday night to finish it off. It wasn't quite what I had in mind but it worked in the end. Ros did a talk as well on Saturday morning. In the afternoon we packed up some birth kits that get sent to developing countries so women can have access to some sterile gloves, string, razor blade, gauze, soap and plastic sheeting when delivering their baby. It can help reduce infection and problems for the baby and mother. We packed up 200 kits and were joined by two lovely young women from Parramatta. Amar and her sister Farrah. Amar had just completed her HSC (Year 12) and wanted to spend her holidays giving back and volunteering before starting UNI next year. Ange, Jon and Evie visited for a short time and Shell came for a short visit after dinner. All in all the weekend went well and was a nice change from the crazy month that has happened. Big thanks to all the lovely ladies for their love, support and help.

I stopped off at the clinic in Miranda in the afternoon for them to change the bag on my drain and to check the dressings. 2.30pm and it was 250ml!!!!! WTF! Come on! Nurse Anne checked my dressings and they were not very good so she changed them, tried a new type of dressing to see if that worked any better (it didn't). She 'tut tutted' at the state of my skin. Watched some of Hanna and had an early night. The weekend was wonderful but still very tiring and draining, pun intended.

Monday. Justin came at 11.45am. 150ml. He asked how the new drain was, told him about the bellows issue but that it worked with the bottom locked off and I just squished through the fluid every so often. The fluid is now a pale orange colour, almost yellow more than orange. Only a few little floating spots in it. Exercises, played the piano and binged Hanna episodes. It's a good show. The guy who plays Erik also is in Altered Carbon which was a show I really liked on Netflix. I was meant to go to lunch with Carsten but his zoom meeting went over and then he had to do more work in the afternoon. It is probably for the best as I wasn't feeling that good, bit of a shitty day really. For some reason I had some sores on my tongue, like I do when I eat chilli. Maybe I'd chewed my tongue when asleep? I didn't think I'd eaten anything but maybe there was something from the weekend that disagreed with me. I couldn't eat anything very well, yoghurt even hurt. Water was ok. Pither needed to do some shopping, I had no food either. I didn't know what I could eat so got some frozen fruit and milk to make a smoothie. That was ok. Carsten called me in the afternoon and we caught up. His twin Uwe is flying in from Germany so the rest of the year will be too busy to meet up in person. A phone call was probably best anyway. Binged some more episodes of Hanna in the evening.

Tuesday. Tongue slightly better but still annoying to eat. Justin arrived around noon. 125ml. Going in the right direction. Skin looks and feels like it's been sandpapered. Justin puts a special dressing on one part that is raw. We discuss tomorrow. I have my PET scan at 12.20pm. The community nurses are super busy, 4 staff are off sick or isolating as they have been close contacts to someone with covid. For the wider public these rules no longer apply but they do when people work with vulnerable people. That's me now, I'm classified as 'vulnerable'. We agree that I'm confident with the drain and can change the bag myself so he leaves me with some extra supplies and says for me to call the office when I change the bag to record my output. He'll cancel the clinic appointment I had at 1.30pm. That was when I was going to go to the dentist for my chipped tooth but that had to be changed for the PET scan. Thursday he'll come and take the drain out. Friday he'll come at 10am before my oncologist appointment. Ok, plan sorted.

Kim, oncologist nurse for Dr Man, called. I need to be booked in for a heart ECHO. Everyone who is going to have chemo has to have one to check their heart health. 23/12/22 at 8.30am. EEEEEKKKK! I am not a morning person. At least it's at Miranda. I also need to be booked in for a blood test but we can do that on Friday. An OT needs to measure my right arm. I'll have to have that done every 3 months for 2 years to make sure I don't start to get lymphedema, swelling of the arm as the lymph nodes were taken out. A referral to the McGrath foundation is put in. Someone calls to check on how I'm going, mental health check to see if I need any support or just want a chat. Kim will be on holidays for two weeks so the foundation will call on her behalf.

Next question - PICC or PORT? This is for the chemo. She isn't sure exactly but thinks possible 6 months of chemo, starting at the beginning of January. Happy New Year, have some toxic chemicals pumped through your body to go hunting for Hector's relatives. We discuss the pros and cons of each type and she says she'll send me some information forms about each one. PICC line is outside the body, needs to be dressed every week, can't be gotten wet. PORT is under the skin, small operation to put it there, but it can get wet and doesn't need any dressings etc. We agree with my sandpapered side that the PORT would be best so to avoid a repeat nasty skin experience. Maybe I'll name the PORT. Does anyone else name random inanimate objects? I always have. I also allocate people numbers if I forget their names. One lady I met over 20 years ago and have seen a few times since. I can never remember her name but I allocated her the number 17. About 5 years ago we were discussing my terrible memory for names and I told her she has a number. She says "I hope it's 17 as it's my favourite number". The X-Files theme song plays in my head.

Wednesday. Changed bag at 11am. 95ml. Today is PET scan day. Shell dropped me off at St George Hospital. My appointment is for 12.20pm. Ange is going to pick me up and last night we had a discussion about when it would be. I said that if I say tonight they always run late then that means tomorrow they will be on time. I was right, Peter calls me in at 12.18pm. He asks some questions, takes my height, weight, measures my blood glucose levels and then puts a cannula in my left arm. I take off any jewellery (ring and bracelet), my earrings were ok to leave on. They are gold sleepers and not very big. Off comes my watch as well. No bra. Peter takes me to a small little alcove with a 'comfy' chair. Yeeeesssss, if you don't have a drain hanging out of your side it might be classified as comfy. I sit down, he presses buttons, feet up, head back NOT THAT FAR BACK, breathe breathe. "So sorry" says Peter. I need to be as comfortable as possible and not move much. At radioactive tracer will be injected through the cannula and you can't move much otherwise it can absorb into your muscles and you get a bad reading on the scans. He puts a warmed blanket on me - keep my feet out please, i don't like my feet covered. A lady comes in and gives me a plastic (save the planet please - I wonder if it can be recycled or composed) cup with some yellow liquid in it. Straw coloured....that's what your pee is meant to be to make sure you are hydrated. I am meant to sip it. I will get two more cups over the next hour, 20 mins apart. It tastes sort of sweet and a hint of lemon, slightly thicker texture than water. Not unpleasant. I ask the lady if there is a pillow to put under my right arm as it was pressing on my drain and uncomfortable. She gets one for me. Much better!

Peter goes out and closes the curtain. Weird designs on it. Some of them sort of look like breast lobes or ducts. Appropriate. Others looks like lumpy tumours. Also appropriate. Maybe some coral, some weeds....maybe it is meant to be an underwater scene? The background is blue. No fish though. It must be 20 mins, back for cup number two. The brown tumour designs sort of look like old stye bread loaves with sesame seeds on them. I have been fasting and haven't eaten since 8pm the night before. Now the breast ducts looks like strawberries. In comes a Dr to ask me questions. Where was my surgery, when, what did I have done, what other scans have I had in my life, any other surgery, any injuries..........erm, how long do you have? Most recent, wooden chair seat dropped on right foot and bones have been compressed, still hurts a bit. I list off other injuries I have had over the years. Dr is writing furiously. I hope his pen doesn't run out of ink. I pause, he looks up expectant, but I list off a few more. Any vaccinations in the last year? Dates? He needs to know the details as they may explain what shows up on the scans. I had a bone scan of my right foot once as I had some stress fractures. It lit up like a Christmas Tree, or like stars on a cold clear night. I hope I get to see what my scans look like. 3rd drink. Another nurse comes in, she'll be doing the scan. I need to go and do a wee she says. The drink is a contrast, it coats the oesophageal track and stomach, intestines. It helps to see what is where on the scans. Cool. Wee done and then into another room for the scan.

The PET machine looks like a big donut standing on it's side, with a skinny bed coming out of the middle. I lie down on it, my head cradled in a soft squishy contraption. I'm asked to put my hands above my head if I can, bend my elbows, grasp my forearms in each hand. A guy is there, he puts some rolled up towels under my upper arms beside my head to rest my arms on. That's not too bad, a bit of a stretch but I should be able to manage 45 mins without moving. Pillow under my knees. That's better. The lady says she will just reposition me a little and puts her one hand right on my drain site and the other on the back of my upper arm. SHARP BREATH IN! "sorry sorry sorry" she gasps. I'm rolled into the machine once, twice and then a third time but I stop fully inside. Then it stays there for a bit, then moves out a bit, stops for maybe 5 mins. Repeat the length of my whole body. There is a hum in the room, sort of a bit softer than the noise of a big long haul plane. My mind drifts to think about travelling. Where should I go on my next big overseas trip? Faroe Islands, Iceland, Greenland, Shetland Island, Orkney Island, Outer Hebrides in Scotland. Scan done, I'm asked to wait in a tiny little room, like a broom closet with nothing but a bench seat in it. The technicians are checking to make sure the scans are good. A few mins later, yep, all fine, you can go. 2.19pm. On time, early even!!! Impressed. My theory worked. If I say they will be late they will be on time.

I call Ange. She hasn't left yet. That is perfect as I was very hungry and there is a cafe just around the corner from the hospital. I'll get some lunch while I wait. I got a steak sanger, very yummy indeed and a triple choc biscuit. My tongue was better on the left side and almost better on the right side. It was so nice to eat some solid food again. I'd just finished lunch and paid when Ange called. She'd turned into the main hospital entrance and then there was traffic and it was a bit crazy but eventually she got back onto Gray St and she collected me. Then we sat in traffic for what felt like a LONG time, it was backed up because everyone wanted to turn left. Maybe it was school pick up time? We got past it eventually and then a clear run home.

2 weeks since I have had my operation. Where did the time go? I made up a file for all my cancer reports, scans, booklets, pamphlets etc. Yes I am a virgo and INFJ. Things need to be organised. You might not think I am like that if you see my room but I am an organised person.

Thursday. The drain is coming out today!!!! I read some news articles while I wait for Justin to arrive. 11.30am - not Justin, it's Lauren. 100ml but it's been 2 weeks so out you come drain. I realise I never named it. It gave me so much grief I guess it didn't deserve one. Lauren gets me chatting about the photos of all the nieces and nephews on the cork board in the kitchen. She is trying to distract me while she pulls the drain out I bet. Yup, hunch is right. It's out, didn't really hurt once the stitches had been cut and the first pull. There was at least 30cm of tubing inside me. All the way to my boob. (Colour update, some little patches of dark purple and red, hints of green and yellows but almost back to normal colour) Lauren says it goes all the way into the boob inside. I can believe it. It's gone! Relief! My side still isn't happy though, red and raw in places. Also, the feeling coming back in certain areas is VERY sensitive. She puts a small dressing over the hole that is left. She said she'd leave a note for Justin to bring some waterproof dressings for tomorrow. It'll be nice to have a full shower again. I have a different set of exercises to do each day now that drain is out. Some of them really show I am going to have to work at getting my full mobility and range back for my arm. The scar from the auxiliary clearance is VERY VERY tight.

In the afternoon I had an optometrist appointment with Peter. He checks out my eyes. Looking ok, keep doing what I am doing. He checks the fit of my contacts. Right one is ok, left one is a bit close. As in the hard part is a bit too close to one of the bubbly bits of my cornea. It's not touching but it's closer than he would like. Possibly why it got irritated. Next he checks my prescription. My right eye could have a slight change. My left eye doesn't have very good vision, or not as good as he would like me to have. My lens is a bit scratched up and a bit of calcium build up. Understandable as it is over 3 years old. He tells me to give it another good deep clean. He trials another sized lens to widen the fit. Plays around with the prescription. He puts on me a special pair of classes which he can put in different pieces of glass with prescriptions in them. "Is it better or worse with this one?" "Can you read this line". XFDNH. "This line". H....F or is it a P....O or D? Not as good. Switch out that lens and tries again. That was definitely worse. Back and forth for about 10 mins. Ok, I would benefit from a new lens and prescription in my left eye and a new prescription but same lens fit in my right eye. $$$$$$$$$$$$$$$$$$ Can't complain though, memories of recent blind days are still painful. Peter says to wait until next year sometime, but definitely within the next 6 months. Get all my cancer treatments sorted and on schedule first.

Ok, the blog is now brought up to the present day (15/12/22). Tomorrow I meet my oncologist for. the first time. Dr Jonathan Man. I found a profile online for him and he seems to be someone who I could like.