59. Phantom Nipple - it's a thing.

It's been a while since I wrote, again. Where does the time go???

First things first though, the itches are gone and the right drain is out. Celebration!!!! 🎉🎊🪅 Two things that make life much easier to handle. The right drain amounts since last time were 70ml, 70ml, 90ml, 75ml, 50ml, 50ml, 35ml (ish), 20ml. The drain came out on Mon 17th. The nurses came every day except there was a bit of a hiccup on Tuesday 11th. I'd rung up on Monday and told the nurse on reception that I was going to be picked up at 9.45am on Tuesday as I was performing in a choir concert and would it be possible for someone to come before hand. The nurse last week had said it probably would be ok and the nurse on the phone said she would send through a message and someone would call me in the afternoon to confirm. I never go the call to confirm and by the time I remembered no one had called it was bed time. Mither ended up changing the dressings and I called the office to let them know how much was in the drain (70ml) and to not send the nurse. I got a call around 1.30pm from the nurse wondering why I didn't need her to come so I explained the whole thing and she asked the amount in the drain bag and how were my wounds. On the Wednesday I ended up with a nurse that either was having a bad day or she needs to change profession as she was uppity and snooty! She had forgotten to bring down the dressing supplies and so had to go back up to the car to get them and then was really not wanting to change the dressings even though the right one was coming off and you could see had been leaking slightly around the tube. I won't go into the whole thing but she humphfed a few times and when I insisted she change the right one she sullenly did. She sort of pushed through the fluid from the bellows a bit into the bag and said it was 40ml. She didn't change the bag and I didn't push it. When she left I pushed it all through and it was 75ml. I took a photo of how much it was and then changed the bag myself. I showed the nurse the next day to change the recording sheet. All the other nurses have been lovely so I'm guessing she was having a bad day.

The itches - on Monday 10th I drove down to Tarrawanna to Jon Gamble's rooms. He is a homeopath and nutritionist and probably a few other things to do with complementary medicines. I'd asked Aunty Sylvia what I could take for itching and she had said "Apis, if stinging as well. Urtica Urens". My itches were definitely stinging too. I'd emailed Jon to see if he would make up a remedy without me seeing him and he said it was fine. Urtica urens is actually stinging nettle and my hives did feel like I'd rubbed the top half of my body in a patch of them. After 5 drops that night and 5 drops the next morning the itching was well on its way to the history books, or more accurately, the blog posts. The bumps and scabs were there and some were still very red but the terrible itching was 90% less. Another story about how homeopathy has saved the day for me.

On Tuesday 11th the choir I am in performed a free little concert for a group of older people in Bundeena that meet as a social club every so often. We sang for them last year too and it was fun. Sylvia from choir picked me up. I was doing ok driving but the Royal National Park has so many twists and turns to get to Bundeena that I figured it would be a bit too much for my scars to handle. We had 8 people singing this time (a lot of people have to work), and we sounded great. Very balanced harmonies and all very much in sync too. The group loved the choice of songs we sang. I wore my first costume I had made, a stretchy type of dark purple velvet with gold trims. It was easy to put over my clothes. I attached my drain bag to the back loop of my jeans so I ended up having a bit of a "bustle" bum which was a couple of 100 years after the medieval time that we sing songs from but it worked well. After our concert most of the people from the choir had lunch upstairs at the RSL. Really yummy food and such a lovely view over the water towards Cronulla.

I worked a bit on my Spoonflower shop in the last couple of weeks. The address is https://www.spoonflower.com/profiles/carolyn_heldon?sub_action=shop I now have 42 designs uploaded and available for people to buy if they want. For some reason it says only 40 are available on wallpaper. I guess I'll have to run through and see which ones I forgot to click on a box. If people want to, it would be helpful if you could share the link on your social media pages. Seeing as I don't have any myself. No pressure, just if anyone feels inclined. It would be fun if I make a sale at some point but if not it won't bother me. I enjoy the creative side of making the artworks and the designs. If anyone has any ideas for fabric let me know. A friend said that doing some helicopters, female astronauts and pterodactyls. Her son loves pterodactyls and she says they are hard to find. I also entered two design challenges on Spoonflower. Every week they have a brief for people to design fabric or wallpaper or maybe some type of home decor item. Winners can get dollar rewards and the top 50 get their designs promoted and also are then available to sell without having the designer (me) to buy a test swatch. I entered children's bedsheets and used my butterfly design on a light blue/grey background. The other challenge was monochromatic duvet cover. I created it in purple (of course) and used one of my leaf paintings I did months ago and changed to different shades and sizes and added some different sized dots in different tones of purple too. I actually like it so much that when I get some money I might order myself a duvet cover and some pillow cases in it.

On Fri 14th I went and saw Dr Michael. He checked out my scars and drain bag. He was quite impressed by how good the scars looked. He asked how I had gone through the operation and how I've been. He was surprised I only stayed in hospital one night and was interested in the silicon allergy hives story. He said I was a "very reactive person". I guess I have been this year. He discussed the next step of my treatment with him. Zoladex 3.6mg. This is a little pellet about the size of a grain of rice which will get injected just under the skin of my tummy. It's a slow release hormone therapy which will lower my oestrogen levels. Every 28 days I'll have it done. I have 6 repeats on my script. He says to get a nurse or Dr to do it first and then I should be able to do it myself after that. I have an appointment with my GP next Monday. Dr Michael also talked about me having a tablet daily but that will start after my radiotherapy. I'm also booked in for a Whole Body Bone Scan (WBBS) so that I can have a base line for my bone density as hormone therapies can sometime impact the bones and some people develop osteoporosis. Exercise and healthy eating will help mitigate that risk as well. I'll have the scan next week. A sad piece of news is that due to funding changes he won't be available to my oncologist at Sutherland Hospital so my next appointment is with Dr Julia Chen in a months time. 3 oncologists in less than a year. Hopefully it'll be third time lucky and I won't have another change in a few months time.

Mon 17th - Dr Lucinda called. I've been booked in for a CT scan on Aug 1st and I'll also get my tattoo dots to get ready for my radiotherapy. She said if I hadn't heard from the clinic to confirm a time by the end of the week to give them a call. I hadn't heard so I'll ring up on Monday to check. She said that I'll be having 16 sessions, not 25. She says that with the surgeries I've had and the treatments there is minimal benefit having more sessions and the research shows that 16 will be just as good. I'll be starting the radiation on Aug 14th.

Fri 21st - I went for my check up with Dr Inder. She was very happy with how the scars looked and how my mobility it coming back. She checked out my drain holes and said they looked good. Maybe another week and they'll be closed. She pushed lightly on my 'side flabby bits' at the end of my scars (around my back) and on the right side there was a bit of an undulation along the scar line up to my sternum. It reminded me of when I went on a hike near Arisaig in Scotland and we walked along a peat bog. The ground did the same type of thing. Like a waterbed does when you push up and down on it. Dr Inder said it's a bit of fluid but it should incorporate back into my body eventually. She isn't concerned about it. If it blows up big or gets really sore and hot then see her straight away. She was interested to hear my hives story and will pay more attention to see if it is something that other people do have more often than she knew. Maybe they just didn't mention it to her. The first surgery of mine the hives came out 2 weeks afterwards so it was after I saw her. This time it was quicker and both sides so it was easier to make the connection. She wants to see me again in 6 months time. I have an appointment for Jan 22nd.

Also on Friday I went to the Restore Oncology Clinic at Miranda. They specialise in treatments and rehab for anything cancer related. I had an interview with Renee and we talked about the journey so far. She mentioned she has my blog address and will have a read of it for details. We talked about what I could do physically prior to my cancer diagnosis, what I wanted to do then, what I want to do now and what I can do so far with my own rehab exercises I have been doing. We talked about what I have done and will do for a job and also what sort of things I like to do with my leisure time. She did a 15 minute lymph drainage massage on my right arm and shoulder and also took a reading on the fluid machine that that OT Karen does when I see her. My reading was 0.9, smack bang in the middle of the green section. Renee says they keep a close eye on things to catch any issues very early. Next week I will see her again and we will do a physical assessment and come up with a rehab plan. There is a program called Linc&Steele (I think it's the group that sponsors the program) which means that there are 6 free sessions included for group exercise classes. I'll have my own program, just like with my Lewis classes, but there will be a small group working at the same time. I'll also have a half hour massage.

I've been working hard on sewing my hexagons together. I have done one panel of 193 hexagons and I have worked out I'll need 12 of the same size and that should be the size of a king bed. That will be 2,316 hexagons, then I will do a couple of borders as well. I am really loving how it is coming together. It's like a meditation working on it and very relaxing. I mostly have to feel to sew them together as my eyes can't quite see well enough for the tiny stitches but it is easy to feel if I'm sewing through the paper template or just fabric. In this case I should only be sewing through a little bit of both hexagon fabric to do the whip stitch. The design process takes quite a bit of time but again, very relaxing.

Another sewing project I did this week was I sewed together a quilt top - on the sewing machine. Jenn gave me a care package before my operation and in it there were 10 fat quarters. That means that fabric is cut into a half yard across the width of the fabric and then that is cut in half along the fold. So it should be about 18x21inches. Some of my fat quarters were a little bit on the skinny side but I found a pattern which used 10 fat quarters (which includes the binding!) and then changed it slightly to work with the skinny pieces. It ended up with six 9.5 inch squares by five 9.5 inch squares. I'll put some borders on it and I have some pieces leftover I can use for the binding. It won't be quite long enough but I'll add in some other fabrics. In the spirit of Jenn liking op shopping I think I'll do some hunting and get a bedsheet for the backing fabric and maybe even a blanket for the wadding. It's a cost effective way of finishing it off. I think I might keep it in my car to use as a picnic blanket or for people who freeze when in my car. I usually like to have my air con setting on "arctic".

This morning I went back to my exercise class with Lewis for the first time since my operation. It was mostly on the stretching and using resistance bands side to remind my body how to move properly again. Having to lie on my back sleeping has created some aches and pains in the lower back and hip areas again. At least my neck doesn't hurt like it did last time. I'll have a program where it will complement my at home exercises, Restore clinic exercises and Lewis, so every day I'll have something to keep me moving.

I went into the city for the first time since last year this past week. I met up with a friend for lunch. We went to Blacc Cafe which is in Surry Hills and I had a very yummy salad with grilled chicken on top. It had pomegranate gems on it too which I really like. I enjoyed hearing about my friend's travels in Thailand. Seeing as I can't do International travel at the moment it was nice to live vicariously through his descriptions. Also, I don't have to experience the humidity either (or smell the smelly rubber of the slippers in on of the hotels)! After lunch we went for a walk for about an hour, maybe less. Very nice to catch up again and also have a trip into the city. I don't often go into the city anymore. I used to work in there so was in there a lot. I'm not really a city person but as cities go Sydney is a nice one. I never really knew that until I travelled, especially overseas.

And yes, phantom nipples are a thing, about 50% of people can get the feeling. More of the left side than the right. Like when people have a limb amputated and they can still feel the limb. Sometimes when a cold wind blows across my chest I get the nipple contraction feeling. Quite funny really.