48. "Epiphora is a nice girls name".

Almost another week has gone by again - where does the time go?

On Monday the family all had a brunch together at Ange and Jon's house, an easter egg hunt and some face painting (Thanks Shell!) as well. Watching the kids, especially Zaeli, get so super excited when they found an egg was the highlight of the day for me. She would squeal at super high registers "I found one" and then rush over on her little legs, only to see another one and it would all repeat. Sometimes she even had an excited little dance added. The kids had to stop looking when they had found 10 as there was only 10 each. These were the plastic eggs which had little eggs in them, though some were bigger chocolate eggs on their own. One of those was in the sun.....I told Anna that it might need to go in the fridge before the foil was taken off. There was a huge amount of delicious food and even a walk down to the beach included. Back home by 4pm and had enough energy to cut some more fabric for hexagons (I knew I might need extra for a busy day tomorrow) and then watched some of The Last Homely House on YouTube and sewed 96.

When I woke up on Tuesday the 3rd and 4th fingers on my left hand were numb. That's not a good sign, but after moving them around for a bit they stopped being numb. Sometimes that type of thing would happen before chemo, if I'd slept weird or something. My toes sometimes are a little numb but again, moving them around and then not really. I mention both to the nurses at chemo today.

9.10am I parked on Frederick St as I figured it would be a long day, having to have a blood test before chemo, then waiting about an hour for the results to see if I had an ok neutrophil count to do my next dose. It took me just over 10 mins to walk up to the hospital and I check in. One of the nurses pops out to the waiting area at 9.35am and says they are running quite late due to 1) public holiday on Monday and 2) two nurses off work (one injured, one sick). I had brought my hexagons so I was fully prepared for a long day waiting.

10.40am Jasmine calls me in and Georgia will take my blood. I mention to her that 2 weeks ago Donna used a longer needle and accessed Persephone going up, instead of down. Georgia wasn't really that comfortable trying it that way and so after having a good feel of where Persephone was (she moves around!) stuck me. It hurts quite a bit as I think that Persephone is lower, further in, than she should be so it's a prolonged stab. Once it's done it doesn't hurt after much after about 10 seconds. Persephone does bleed a bit into the tube but then doesn't want to give enough to get a blood sample. She is a bit selfish that way. Georgia does try a few different syringes and flushing but then she says she'll take it from my left arm. Again, the vein in my elbow area is a bit hard so she takes blood from the vein in my hand. She puts the clear plastic sticky thing over the needle in Persephone and says to go sit in the atrium or out in the gardens for an hour and then come back to check if the results are back.

I go outside so that I don't have to wear the mask longer than I need to. I sit on one of the benches in the gardens out the front. I'm in the shade and the sun is out, blue sky, nice light cool breeze. After about 10 mins a lady sits on a bench about 3m away and starts smoking. Even though there are signs everywhere saying only smoking allowed in the designated area (which is literally 10m away) she puffs away. The wind was blowing it away from me but when she light up a second cigarette straight after the first and the wind changed I got a face full of smoke. I politely told her that the designated smoking area was "down there" (pointing at it) and she said "I'll be done in a minute and I can't walk that far". So, I pointedly stood upwind until she had finished as I didn't want any stinky smoke blowing my way. She looked like she could walk ok to me when she headed back up into the hospital. I know smoking is an addiction but still, I detest cigarette smoke and really don't like it when people don't follow simple rules and I get a face full. I have always been very sensitive to it and always avoided going out to pubs and clubs before the no smoking inside law came into effect.

An RN sits down on the same bench after a while and asked me what I was sewing. I tell him and he asks me if I'm here for treatment (he could see that I had a needle sticking out of Persephone and tubes hanging out of my shirt. I said I was and he asks if I worked close by. I gave him a brief run down about that story and he was interested in my dementia degree. He used to work with people living with dementia who were violent and a danger to themselves and others, often organising to send them to Garrawarra Aged Care. I mentioned how I would love it if there was someone rich who would like to donate a bunch of money to rebuild Garrawarra into little cottage homes so that the people who are there can have some dignity and not have to live in a place that is a cross between a prison and a hospital. We talked about changed behaviours (he used behaviours of concern - he needs to update his training) of people with dementia and how 90% of more of the time it's due to environmental issues (not talking about climate change here...though that IS a risk for older people and people with dementia. Talking about the environment around the person, the place they are living and interacting with others daily) and when they are changed then people are happier and are not as likely to hurt themselves or others. He seemed to be under the impression that it wouldn't matter that much but the research does show it makes a big difference. I asked him a bit about what he knew about different dementias and he didn't really know anything more than Alzheimer's and Vascular dementia. I told him there were over 130 diseases that can cause dementia and everyone is different. I'm not entirely sure that he believed me. This is the issue I have with the new rule going into effect on July 1st that the government has mandated an RN in every Aged Care home for 24 hours 7 days a week. When there are at least 85% or more people living with dementia in aged care homes and that most RN's I talk to have limited training with dementia. I have now heard of 6 homes closing down because they won't be able to get enough RN staff to cover. That's hundreds of people who need to be moved and have an acceptable place found for them to live. Not very humane is it! Humphf!!!

Back to my chemo story. I head back to the clinic just before noon. I ask Georgia if she knows if my results are back. She says the supervisor would let them know. She looks very harried and I see Jasmine bouncing from person to person as IV machines beep and beep and beep for various reasons. Sometimes there is an air bubble, sometimes it's saying there is 5 mins left. Sometimes it's because the dose is finished. I tell Georgia not to worry and I'm in no rush. I go and sit out in the waiting area, pulling out my hexagons again. It's a good conversation starter with other people there. Many people are interested and sometimes either visitors or other hospital staff stop and ask me what I'm doing. It passes the time nicely. I can almost do a whole hexagon without looking now, just by feel. That's why I know my fingers can't be that numb.

Just about 1pm Georgia says I can come in and I sit in chair number 12 - I'm in the little room just off the main clinic area. The overflow room. There are 3 other people in there too. I continue with the hexagons, chatting with Gary and Maria as I do. I find out that Maria knows who Mither and Pither are and even remembers that there are 5 girls in the family as she remembers seeing us on the train station going to church when we were little. It's 2.02pm by the time I'm finally hooked up to the Taxol. It is number VIII overall but number IV for Taxol. I'm asked about side effects, I tell them I've lost my fingerprints, the numb-ish toes and fingers, recovering from the allergic reaction to Cephalexin. 148.9kg, 36.2c, 100% O2, 136/82 bp, neutrophil 2.6 (YES!), lymphocytes, 0.83 (apparently those don't have to be over 1, just the neutrophil count. Georgia was very happy my count went up to 2.6 in just a week but said I would probably need another blood test on Monday because they dipped so low. Seeing as they were so busy and I was seeing Dr Michael on Friday she said for me to check with him and if yes then he can write me a referral. I was done by 3.30pm and went over to the cafe to get a yoghurt with passionfruit and nuts as I had missed lunch. I had asked another nurse for a sandwich but they had all gone, being so busy. She was going to get me some cheese and crackers but never came back. I don't blame her, everyone was run off their feet. I had a protein ball I had eaten but it wasn't enough. I could tell because my head goes spacey if I haven't eaten. It is still hard to remember to eat sometimes when you don't have an appetite.

On the way home I stopped off to get some groceries and there was a breast cancer pink ribbon stall outside the IGA. The young guy sitting behind it said "Do you know about breast cancer and would you like to support research by buying a pink ribbon?" I said "I have breast cancer and just came from having chemo." He looked surprised and said "Well, I didn't want to assume but you look great and are rocking the bald head". He gave me a pink ribbon. (Why pink? I have issues with the colour pink. Sorry Kate from The Last Homely House, I know you love pink. However, I do think that pink and green does work well so if i have to do pink I'd add green). I went home and found out that Pither had gone out to Bunnings to get a new pair of secateurs - long bladed ones to chop hedges and edges. Tuesday is Indian night for the parents so I met him at Sutho (tracked him on the Find My app so I got there at a similar time). I got something from subway, I don't know if Indian would still taste yucky like when I had it before. I figure I'd just wait until I'm done chemo. By around 7.30pm I was feeling very tired and achy so went and lay down and watched some of The Last Homely House. I tell you again, if you want something relaxing, just go listen to Kate chat about what she is creating. I was falling asleep before 9pm so took my contacts out and went to sleep.

Didn't do too much on Wednesday. During the night I'd had to take some pain killers due to stabbing pains and aches waking me up. I didn't get up until 10am and the only other time I woke up was 4.30am to pee. Some fabric which I had designed and uploaded to Spoonflower arrived in the mail (yesterday). The one called Falling Leaves. I washed it and then made the bodice for the little dress I am making Aneira for her birthday. I did quite a bit of lying in bed as well, got very tired quickly. I didn't do exercise with Lewis as he has come down with a cold. I want to avoid that!! No more ambulance rides for me.

Thursday I finished off the dress, apart from the buttons and button holes. Mither had to do one little bit of overlocking as it was catching and then the needle even broke once for her. The fabric is a bit thicker than other fabric I have used and it was gathered fabric and two layers of the bodice together so it was thick! Shell was coming over after work to make Aneira's birthday cake. https://preppykitchen.com/strawberry-lemonade-cake/ I read through the recipe and realised it was going to take at least 5 1/2 hours from start to finish. So I made the strawberry reduction and then I was on a bit of a roll and decided I might make the cakes so they would be cool enough to frost when Shell got here. I had sent Shell some messages, she was doing a program with people living with dementia at the Museum of Contemporary Art so when she was done she called me, just as I was about to start the cakes. She said she would probably get here by about 3pm but agreed it was probably best for me to make them.

While the cakes were cooling I finished off the tutorials for Module 2 of my TBI MOOC. I highly recommend https://www.utas.edu.au/wicking/understanding-tbi it. It's free, as well as the Understanding Dementia and Preventing Dementia MOOCs. You can pick and choose how much time you spend a day and if you want to just go page by page it's about 10 mins for most pages. Very easy to do and works on tablets, phones as well as computers. Go on, click on the link and sign up to one of the courses. If you don't want to or you have done them, share it with friends and family. More awareness and education means less stigma and discrimination in society and makes life better for all.

Shell arrived after 5pm, and then Ange, Jon, Evie, Dyl, Aneira and Zaeli were going to invade. They had all been at the Royal Easter Show for the day. I decided I should do the buttons and button holes on Aneira's dress and then wrapped it up. Shell had stopped to get Indian and Japanese food for the 'Barbarian Hordes'. as well as a cheese naan for me. After dinner Aneira opened her present and promptly put on the dress and started spinning around. It looks great on her. With all the noise and hubbub going on, plus Shell doing some artworks of Mira, Royal Detective for the cake, I figured I probably should make the buttercream too. It was really yummy, had some of the strawberry reduction and lemon juice so was a nice zingy strawberry and not too sweet taste. Aneira helped and was excited to see her cake start to come together. I was getting tired again but with Shell frosted the cakes before I had to go lie down. Stabbing pains again, lots of muscle aches. I take some pain killers after about an hour of trying to sleep.

Friday it's Aneira's 6th birthday. Everyone (except me and the parents) are at her party down at Jamberoo. It's a water park which I love to go but 1) lots of viruses and bacteria and infection risk and 2) I have an appointment with Dr Michael today at 11am. I drive down to the hospital in the sun and wonder if I should take my umbrella with me. Mither says "Look out the back" and there is rain and looming black clouds rapidly heading our way across the National Park. It rained on us as we walked up to the hospital so good call Mither.

I had printed out a page of "Carolyn's highlights" for Dr Michael so that I didn't forget anything to tell him. He updated my patient record with my allergy. He says that the medical term for excessive watery eyes is like a nice girls name - epiphora. I thought that was very funny as my eyes can water a lot with my contacts. I can say I'm having an epiphoric episode. He was a bit concerned about the numb fingers and toes. The fingerprints disappearing is quite normal, if annoying. He told me to close my eyes and he poked his pen into the tops of my big toes and told me to say when I could feel it. I could when he poked me pretty much at the same time so that was ok. He is hesitant to drop my dose right now because Hector was so fast growing but also because I had 7 lymph nodes with cancer too. He said to make an appointment to see him in 3 weeks unless I'm worried or get worse symptoms but then see him in 2 weeks. He did say that the stabbing joint and bone pains, plus body aches can be a Taxol symptom but more usual if you have bone cancer than breast cancer. Hmmm, maybe there are Hectorites who are floating around being hunted and murdered by the Taxol chemo and I'm feeling their last death throes. Or their frantic efforts to avoid being murdered. Whatever it is, it hurts. He wrote me a referral for a blood test next Monday. I wonder what my count will be.