Wintery Days

The days seem to slip and away and merge together here at Green Point. It’s cold and miserable outside, the winter sun elusive in this big house. I have been spending my days on the couch, under a heated blanket with the dogs curled up on my lap working on the website and fine tuning the images. Each day Mum and I take the dogs out either along the lake or in the car to a deserted park somewhere nearby. The afternoon sun healing and warm.

Last week, I went in to Forster Hospital and had my last dose of the AC chemo drugs I’d been on. The next ten days were perhaps the most brutal. I was completely bedridden for ten days, unable to sit up ot even speak at times.

I had a check-in appointment with Dr Giovanna last Wednesday, but apart from that, I haven’t seen a soul outside of the house. I couldn’t believe it when I began feeling sick last night and woke up with a nasty cold this morning. I was due to get a blood test today and begin my first treatment of Paclitaxel tomorrow. I called the oncology team and they told me I couldn’t come in and that we would reschedule for Friday.

I’m completely terrified for the next treatment. At my appointment with Dr Giovanna last week, I was in tears talking about how horrifically sick my last treatment made me and that I couldn’t do it again. She reassured me, saying that she was confident this new regime would be easier on me. I was contacted by an old school friend on Facebook the other day. She is going through a very similar experience to me and is slightly ahead of me in her treatments . She is almost finished her Paclitaxel treatments and told me that they were easier, but she had nerve issues with her feet and that she thinks she might lose her finger nails. Dr Giovanna said that muscle pain and nerve issues in fingers are common issues. None of these things sound inviting, but I’ll take it after what I’ve been through with the AC regime I’ve just completed.

I’ve been working on the next images. I have begun collecting sticks to build the nest for Home and today, unpacked the embroidery I had begun for Calla. I tried to start creating some music yesterday, but I couldn’t get started. It was freezing cold in my room where the studio is set up - about 10 degrees. I felt frustrated, worrying about how I could get a new model to work with here in Forster, not feeling like I could move forward, wanting so badly to make the next few images so I could begin sharing my project with the world.

Jun 25

I have spent the last ten days sick with the nastiest head cold. I’ve been struggling to be motivated to work on anything - not knowing if I’ll be well enough over the next twelve weeks to do anything - or if I can get a model. My chemo was postponed three times as I was unable to go into the hospital while I was sick. I finally went yesterday morning to start my new regime - weekly Paclitaxel. I had the first treatment of twelve. I felt absolutely awful going in there - incredibly anxious….

I got home feeling tired and stressed and fell asleep. I woke feeling ok and as the night progressed, I felt better and better. It wasn’t until I went to bed at ten that I realised I was REALLY awake. The dexamethasone was actually doing its job this time, too well. I had a terrible night’s sleep, not feeling bad, just wide, wide awake.

I woke this morning feeling the chemo. The usual feeling, just not as strong. I managed to get out of bed and have tea and a piece of toast. I’m so tired and weak, but very encouraged that I won’t hit that terrible lows of the last regime.

In other news, I still have some hair, although how, I don’t know. Every day I lose handfuls and handfuls. It’s mostly gone from the middle of my head so if I pull it back, I can make a tiny little ponytail. I don’t kow how long this will last. I really can’t believe I’m not bald with the amount I have lost every day for months now. I discovered a big bald patch on one of my eyebrows yesterday and when putting on mascara for the first time in a few weeks, discovered that my lashes are looking pretty sparse too.

While I’ve been sick with the cold, I’ve been working on the beading for Calla’s bodice. It’s a painfully slow process. I’ve clocked up tens of hours and only covered the smallest area. It’s been raining for days and days too making it impossible to get out and collect materials for the nest for Home. I’ve been putting together some movies, collating the behind the scenes footage of each shoot and it’s process. It’s progress at least.

I’m feeling incredibly frustrated and it’s getting to me. I feel sometimes that I’m being held back by so many things. That the process is being blocked at each turn. I’m trying to be patient. It’s hard. I’ve always said I’m not good at being sick and this is certainly a test of that. I need something to work towards. It’s strange living this life - not going to work, not doing the shopping, not having a house to run. It’s such a shift from what I’ve known for the last twenty years.

Jul 7

Weeks have passed and the days continue to meld into each other. I had my second dose of Paclitaxel last Friday. I was due to have the treatment the Wednesday before, but that morning Dr Giovanna had called me to tell me that my last blood test (I have them a day before each treatment) had shown that my liver function was compromised. She said that the numbers had been slightly high since the beginning of my chemo in April, but this last week had shown a spike. I couldn’t have my treatment that day and I had to go in for a liver scan instead as soon as they could fit me in. She said it was nothing to worry about and that Paclitaxel was known to cause things like this. She said that the liver scan was just protocol and that they wouldn’t find anything. She would have to reduce the dose of my Paclitaxel until things were under control. Lynda, my oncology nurse called me later that day to reschedule chemo for Friday and a liver scan early Thursday morning.

The guy who did my liver scan assured me that he couldn’t see anything suspicious on my scan but my liver was slightly enlarged which would explain my elevated numbers.

When I showed up for my treatment on Friday, I mentioned that over the weekend my heartrate had been really high - over 100 bpm resting. They called in a doctor and before I knew it I was being prepped with an enormous cannula ready to be rushed off for a CT scan of my lungs to rule out clots.

After my scan, I was taken back to the oncology ward for chemo while we waited for the results. Dr Giovanna was called and she was confident for me to have my treatment - Paclitaxel is not known to cause heart issues. The last regime was more likely to be responsible. Just as I was leaving late in the afternoon, my results came back - clear again.

Once again, I didn’t sleep after treatment due to the steroid. The following days felt fatigued but ok. I’m beyond happy that this treatement is being kinder to me. Two down - ten to go.