52. No more chemo!

Yep, I'm all done with chemo. My last 4 doses were cancelled. So all up I had 12.

4x Doxorubicin & Cyclophosphamide (dose every 2 weeks)

3 week break - I got really sick, ambulances, hospital etc if you remember....

8x Paclitaxel (dose weekly with a one week delay a few weeks in)

First dose I had was on January 10th. That is 129 days ago. I feel like it was a marathon where the finish line wasn't fully defined but you had to have faith that somewhere there was a finish line. Here is how the week panned out.

On Monday I went for my blood test around lunch time. It's a good time as it's the quietest time I have found so far. The nurse stuck the needle in the vein in the inner part of my elbow, left side, but no blood came out. She said "Is your vein usually like this?" I said not usually, it's a good one, but it has been used many times this year. She dug the needle around a bit more and got blood out eventually. Surprisingly I didn't get a bruise for all the stabbing and digging she did. I hadn't slept well on Sunday night and was pretty tired and blah on Monday. I ended up watching a few episodes of Sweet Tooth season two on Netflix in the afternoon and evening. It's a very cute, a good "comment on society" show. Not really a kids show though.

Tuesday it was chemo day. I rocked up to my appointment and it was Donna again as the nurse. She said my neutrophil count was 1.88. That is good. When she was asking all the questions she normally does about how I'm feeling and any side effects I said that all my toes were numb, the balls of my feet were numb and my finger tops were also numb. The balls of my feet being numb came and went through the week but more often than not it was something that was annoying. Donna told Kim who sent a text to Dr Michael. Dr Nick wasn't in to come see me like last time they needed to talk to a Dr. Donna wasn't sure if it would be a reduced dose and said that she can access Persephone and get it sorted in case I will have treatment. Just as she was about to stab me (she had the needle in her hand) Kim came back and said that Dr Michael had cancelled the treatment. It was meant to be chemo 9. So good timing! Not being stabbed is a bonus. Donna says that when I come for the appointment with Dr Michael on Friday, if they clinic isn't busy, they could take my bloods for chemo next week instead of me having to come in on Monday. I only got to do 7 hexagons. All up I was at the hospital about an hour and it takes about 25 mins or so to get to and from the hospital. So even though I didn't have chemo it still takes quite a bit of time too.

I called Ange to see what would be a good day for a visit this week and it so happened that Tuesday was a good day so I said I'd drop off some groceries I'd just gotten on the way home and then come down for lunch and the afternoon. I chatted with a friend on the phone while I was driving and then saw that the Bulli Pass was closed! I hadn't seen any signs saying it was closed. If I had I would've taken the coast road. Perhaps I missed them cos I was talking but I always check the big overhead signs when I drive. Anyway, it meant I had to go down Mt Ousley which is not something I like to do if I can help it. At least the road was relatively quiet and the weather was nice so it was ok today. For people who don't know, Mr Ousley is a long, winding road down a steep mountain and has a history of bad crashes. Big trucks have to go down it 40km/h and not allowed in the far right lane. Good thing I have a modern car with hands free and can tell Siri to give me directions on how to get back to where Ange and Evie were. I probably could have figured it out but for peace of mind it is nice having a car that can assist in navigation.

Ange and Evie had walked/scooted up to the playground next to the Bulli Beach Cafe. I parked and we went and had lunch at the cafe. It was a beautiful day and a lovely view out to the ocean and the ocean pool. Suddenly me and Ange started to laugh as there was a guy who was doing some filming of a puppet - like one that is on Sesame St or one of the muppets or something. They were down near the water. Evie went to check it out a bit closer and put her feet in the water for a bit while we were waiting for our food. After lunch there was some more playing in the playground and then Jon called saying he was at the library in Thirroul doing some work and had forgotten his laptop power cable. We went and got it and had a really fun hour and a half at the library. Looking for books to borrow, doing a Bluey characters hunt (the staff had laminated 8 characters and stuck them around the library to find and tick off on a list), colouring in animals on a big piece of paper stuck on a table and playing with a wooden ice cream shop that was set up on another table. It was a really nice afternoon and extra nice when usually Tuesday afternoons I feel totally crappy after the chemo.

Wednesday I did exercise class with Lewis. Weights on the heavier side due to feeling about 95% well. There was also a lady there (same age as me) who has been through a similar journey last year and so afterwards we had a chat. She only tolerated 3 doses of Paclitaxel and her toe nails are still all black (mine aren't!) and it's been months. She also ended up with a blood clot in her arm. Everyone's stories are so different with challenges that we have to overcome.

Thursday I did some sewing. My friend Mel did a bunch of cross stitches of things that I like. 10 little ones and a bigger one. I decided to make some tote bags with them. One bag was 9 of the little ones on one side and one on the other side. The other bag was the bigger cross stitch. I had a lot of fun making them and now I have two new awesome bags. I went to choir practice in the evening and it was nice being able to sing again without feeling super tired. I had much better breath control again which was great as we were practicing Barachu. It is a song/prayer in Hebrew and has very looooong phrases. We also practiced one of our songs that has very syncopated timing. There are a couple of new alto ladies and they were struggling a lot with it so I helped them out by sitting closer, singing louder and pointing out the notes and words as we were singing. That definitely helped.

Friday (today) I saw Dr Michael at 11.45am. Mither came with me. I tell the girls at reception that Donna had said if it wasn't too busy they could take my blood test. Donna was there and she came out and got me to sit in the little room outside the main clinic. Mither could come in too to see the shenanigans of accessing Persephone and getting her to bleed. As usual Donna gets out all the tubes, syringes, needle, etc etc stuff on top of her trolley. She has a feel again of where Persephone is and then stabs me. It's always a bit painful and she sort of gets it first go but wasn't happy so moves it a bit. She attaches a syringe and pushes through some saline to flush and then says there is a stain of blood. Well, that's all she ever got. I don't know how many tubes of saline was pushed through but coughing, deep breathing, moving my head side to side, sitting forward, lifting my arms. None of it worked. She goes and asks another nurse, Carmen (hadn't met her before) to see if she could do any better. Carmen decides she will take that needle out and start all over again. Same process, not quite as painful being stuck a second time but no success either. Georgia pops her head in and says when I'm ready I can come see her. Carmen and me decide that maybe leaving the needle in while I see Georgia and Dr Michael might make her work afterwards.

Georgia says that Dr Michael is the only one in clinic and is a bit behind so she will start writing in my notes. We got through how my toes and fingers were on Tuesday and I say that they are a bit better today than they were. Toes still worse than my fingers. Bone pain hasn't been as bad since the dose has been dropped. Only had to take pain killers once in the last week or so. Dr Michael comes in after about 10 minutes and gets the update. He tells me to close my eyes and moves one of my fingers very slightly. Asks me if he has moved it up or down. I say up. He says good. We discuss chemo and going ahead with any more doses. He says "I'm not going to lose any sleep over stopping at 8 doses of Paclitaxel." He mentions in the research that few people even get up to 8 doses and very few make it to 12 doses. So that was it, a decision to stop chemo. Done! He says he'll message Steph (Dr Inder - breast surgeon) so I can have an appointment for next week to talk about my next surgery.

I ask him about risks of cancer coming back because of 8 doses instead of 12. Too hard to really know as everyone is so different. I ask him would the risk be lowered with a mastectomy or double mastectomy and he says yes. Risk lowered for it recurring in the breast area but no change of risk for cancer coming back in other areas of the body. Would I still need radiotherapy with both boobs removed - yes, maybe less of a dose but Lucinda can give me more details of that at my next appointment with her (June 2nd). I have done a pros and cons list for a double mastectomy and I actually only had one con which would be longer under general anaesthetic for the operation. I wouldn't want just one boob taken off and a prosthetic, that thing would be so heavy it would have to be classified as a weapon. I would be quite happy to "go flat" as it is known. Jasmine took the needle out of Persephone after the appointment and she said that many women have wanted to have a double mastectomy after having gone through chemo. More want a reconstruction afterwards but she says also that the ones who choose to go flat are all happy with the decision too. My pro list (so far) is being able to run and exercise without having to strap down the boobs with industrial bras etc, that still don't really work well. Being able to do star jumps without two big lumps flying around would definitely be a bonus. Being able to get clothes that fit better, especially button down tops and blouses. Being able to lie on my tummy for a massage and actually be comfortable. Being able to see a chiropractor and have them be able to crack my back properly cos I can lie flat on my tummy. Lower risk of cancer returning. Feeling better about myself, mentally and emotionally. I don't have a strong connection to my boobs. Some people do, but to me they are not an asset, they are a hindrance and now also an increased risk of less quality of life and/or recurrence of cancer. I'm a practical person, analytical too. It's something I have been thinking about since I got my diagnosis.

When I got home I rang up Dr Inder's office and left a message (maybe they were at lunch or on the phone). They called back and I have an appointment for Wed 24th at 4.30pm. Now it is feeling a bit like a sprint instead of a marathon. Time to shift mental gears again.