53. Holding Pattern

Ever since I had my appointment with Dr Michael I feel a bit like I've been in a holding pattern, waiting for my next dates and what and how things will be. Dr Inder was sick on the 24th so I only saw her this afternoon.

First up though I saw my OT, Karen, on Fri 26th May. Hard to believe that it's been 3 months since my last visit, or should I say first visit. The machine that I stand on in bare feet and put my hands on the handle bar looking thing decided to have a hissy fit and not work. There was something wrong with the bluetooth connection. Karen was looking at the top of the tablet to see if the little bluetooth symbol was connecting and almost said under her breath "which one is it again?" I said "it's the one that looks like teeth if you tilt your head sideways". I showed her and she said she had never made that connection before. (I decided not to have a giggle at the word connection as I don't think she meant it as a pun, or not giggle audibly). I did then have to mention about Harald Bluetooth, King of Denmark way back in 911-985 AD. He united the clans of Denmark and when he fought in battles he had filed lines in his teeth and put blue pigment in theme. Hence Bluetooth. The computer symbol is the runes for H and B together. I like the story especially seeing as Harald is an ancestor of mine. She found it all quite interesting. On the 4th go and after she used her phone as a hotspot for the wifi, and reconnected both wifi and bluetooth a few times, it finally worked. -2.5 was my score. Still well within the green lines and a good reading. The reading has to be 6 whole points different (either way) from my previous score to send up warning bells. It was -3.5 last time. Karen also measured my right arm with the tape measure at 10cm increments from the middle of my hand up to almost my shoulder. It's a bit smaller than it was but she says I have less fluid than I did so that makes sense. She was very happy with my results and said "Keep doing what you are doing as it's working perfectly".

Mon 29th May I saw Paula. It was a good to chat about how things have been since stopping chemo and my thoughts about my next surgery. I said I had been feeling flat and unmotivated and it took me a couple of weeks to really get my head around the fact that I didn't have anymore chemo treatments. She said that was pretty normal. I'd been on the go go go since mid November last year with diagnosis, surgery, many many appointments, being sick, and chemo. Now that things have been relatively quiet I finally have been able to rest - physically, mentally and emotionally. A bit of a lull before things go full throttle again. I also saw Kim, the breast nurse, before seeing Paula and I had a bit of a chat with her about what a bilateral (double) mastectomy might be like. What physical things might I experience with the surgery. She said that there would be two drains, my chest would be bound with tight bandages to start with to help the healing process of the incisions. Afterward the rehab would be on mobility but also to make sure the scars stay supple and don't get tight to avoid ongoing chronic pain issues. She said it was pretty common for women after going through chemo for breast cancer to think about getting rid of the boobs. I talked about going flat and she said that was more uncommon but an option some women go for and can be happy with their decision.

Fri 2nd June. 8.13am Dr Michael calls me. He was meant to call me at 11.45am but he said he was up for a busy day and if I didn't mind he could chat. He apologised for waking me up, I was sort of dozing so not really asleep fully. My finger and toe numbness hasn't gotten worse, toes sometimes feel better and then feel as bad. He asked about my appetite and I said I still don't feel hungry, though I can tell if I am full when I eat which I couldn't before. He says that I have "enteric neuropathy" which means the neuromuscular digestive system is numb - like my fingers and toes. He said that over time it may improve and it'll be something to keep track of. He said the fact that I can tell I have food in my stomach is a good improvement. He said to make an appointment 3 weeks after my next surgery.

At 10.27am Dr Lucinda called. She was meant to call at 10am. I was still in bed but had been awake and reading the news online. I asked her would I have less radiation if I get a mastectomy and she says that yes, there wouldn't be a "boost" dose for the breast tissue and perhaps I would have 16 doses instead of 25 but we will discuss it in more detail in 3 weeks time. That also will be a phone appointment.

Today I saw Dr Inder. Appointment was for 4pm but she was running about 15 minutes late. She asked how my chemo was going and seemed a bit taken aback that it had been a month since my last dose. Seeing as my 9th dose had been cancelled and then I had to wait to see Dr Michael, and then she had been sick and then it took 2 more weeks to get an appointment....suddenly it's a month. She says that it's best to keep the treatment plan tight between chemo, surgery and radiotherapy for the best outcome. Medical outcome I guess but I do think that I needed to have the pause, be in the holding pattern, to have time to recharge a bit. Obviously don't want the cancer to recharge either but it can't be changed now.

I brought up the choice of bilateral mastectomy. Being her usual blunt self (which I like) she laid out the medical side of what the surgery would entail and the risks and possible negative outcomes as she saw them. Longer surgery than what she had thought - which was about 1cm taken from the skin side of my right boob - so more anaesthetic. Having big boobs it makes the surgery more difficult to get a clean line for the scar. That could mean it being crooked or harder to heal. The "side flabby bits" (as she put it) wouldn't be part of the surgery so they can create issues, but more on how someone might not like the look of their body. Possibly they could rub a bit but wearing a firm elastic crop top would help with that. I'd already thought about that one. I'd have two drains for about 2 or 3 weeks. Not really looking forward to that but now that I know what it entails it won't be quite as bad as before seeing as all I knew before was it was usually 4-7 days and then it just dragged on and on and on. She mentioned that even when the drains are out there could be a possibility of oedema, fluid swelling under the skin, which could create ongoing pain and issues. She was pretty sure I would get that with my last drain but I didn't. Rehab takes a while after surgery and means more intense to get mobility back and scar health at its optimum. She mentioned that my tummy would look more pronounced because it couldn't hide under my boobs....though the way my boobs are falling sideways while sitting writing this the tummy is not hidden. The bra came off as soon as I came home. Maybe a ritual burning of the bras is something I can do next month! Or maybe I should make them into a tote bag so they are useful and won't contribute to CO2 in the atmosphere. She seemed a little surprised when I was definite that I wouldn't even wear prosthetics. The only time I might consider something is when wearing my medieval costume for choir concerts as it has been made fitted for my boobs. I'm sure it can be adjusted to fit whatever my body will look like after surgery.

After contemplating what she had said I still thought it would be my preferred surgery. My list of pros still outweighed the list of cons. Many of my pros were long term and most of the cons were short term. Unless something drastically goes wrong, which is always a chance. I am fully aware of them and will deal with whatever comes my way. Persephone will be evicted at the same time as my surgery. If my surgery is in July then I'll have a port flush at June 30th - the nurses will run some saline through it to make sure it's not blocking up or that blood clots won't form. Dr Inder filled in the operation form and after dinner I filled in my pages and will take it to St George Hospital tomorrow so it can be added on the system and I'll get a surgery date. Either June 28th or July 12th. I have choir concerts on June 29th and July 11th so hopefully I'll be able to do at least one of them if not both. Things will happen how and when they should happen so if I can't do them I'm not meant to.

Tonight I was having a conversation with Val, who also trains with Lewis on Wednesday. She mentioned she knows a lady who also wanted a bilateral mastectomy and Dr Inder was a bit hesitant to do the operation on "pendulous" breasts. The lady had it and is very happy with the results. I guess mine could also be classified as pendulous, or maybe Weapons of Mass Destruction. Not wearing a bra and moving faster than a slow amble can be dangerous to me and others around. Val said within a 2km radius and I said, nah, 1.8km would be more accurate. We were having a good laugh and then I remembered a time in my early 20's when I was with some friends. Two of us had big boobs and we were wondering how much they weighed. Kitchen scales are pretty useless for that type of thing. Now though, I'll finally be able to answer that question. Maybe 1.5-2kg? Val says I could fundraise - people could pay $5 for a guess. The money would be donated to a worthy charity. We had a good laugh over our conversation. She sent me information for a breast cancer support group she goes to on Wednesday nights. I might check it out next time. First Wednesday of the month. Guess it'll depend on when my next surgery will be and how I'll be feeling if it's on the 28th. It might end up being Aug, instead of July. Woah! Where is the year going?!?!

Update on my numb fingers and toes since I spoke to Dr Michael. Fingers are a little bit better, not quite as stiff and my finger prints are coming back. I noticed that just yesterday. I don't think they are quite the same or aren't back fully yet as my iPad won't open with my old prints on file. I added a new thumbprint and it's been working so far. I notice I have more grip when I hold things and drive. I did notice when I was using a pen to fill in my forms today that holding the pen and writing was harder than it used to be. Maybe that's just because I haven't really used a pen for ages or maybe it's the neuropathy.

I had some interesting feedback from my previous post from people reacting to my decision to have a bilateral mastectomy. Some were concerned with how I would look and how it would effect me feeling feminine. It's a good question for people to think on for themselves. What do YOU mean when you say feminine? Does having boobs make you female? Does having bigger boobs make you more female and smaller boobs less female? Where does someone's unconscious bias come from about what is feminine and what isn't? What has society told us within our own cultures is feminine? It used to be illegal for women to wear "male" clothing such as pants, shorts etc but now it's ok. Does that mean we are less feminine than in the 1800's if we wear jeans? Does having long hair make you more or less feminine? Is it your hormones? Your chromosomes? (which there are at least 42 combinations of X and Y and even an X0 - it's not just XX and XY) Your genitalia? Is it your make up or lack thereof? Is it your height? Is it your strength or speed? Is it because you have had a child or children? Does that mean if someone doesn't have a child or children that they are not female or feminine? What happens if I fall in love and the other person is a "boob" person? If someone isn't defined within the "normal" realms of what society considers feminine does that make them less and a minority? Minorities are often discriminated against. Is that what people were worried about that having no boobs would mean I might be subjected to discrimination? Or, is it just that the social construction of feminism has been so bent on a specific image for so long that people have internalised the thought that in order to be feminine you need to have boobs of some kind.