Chemo begins…

It’s early Saturday, the sun is yet to rise. The mornings are beginning to feel cool with the promise of winter. I have spent the last few days alone. Mum managed to get home last Wednesday and Marcie is working in Sydney. The quiet and solitude has been nice after the wild blur of the last few weeks.

I met with my surgeon for my post op checkup last Wednesday. The nurse removed my dressings and told me my wound is healing well.

Dr Morris told me that he was confident that he’s managed to remove all the cancer and that my margins looked clear. He then told me that he had removed nineteen lymph nodes and he had found cancer in eighteen of them. The very last one was clear. I feel as though I have done a dance with death - taken it right to the edge and then made it back. He told me the severity of the situation guaranteed that I would be looking at further treatment. He was surprised that I took the news so calmly, but I had been prepared for this by Helen, my breast care nurse, weeks ago. He referred me to a medical oncologist who called me yesterday to make an appointment for Monday. It’s then that I’ll find out the next steps of this crazy journey.

I mentioned to Dr. Morris and the nurse my crazy fatigue. After surgery, my haemoglobin levels were incredibly low at 77. I had assumed it was blood loss from surgery but Dr. Morris said it wasn’t and we needed to investigate further. I was sent off for blood tests and iron supplements. At least there was a reason for my fatigue.

I feel like I’m at a turning point. Hearing that the cancer has been removed has given me hope and although there is a long and hard journey ahead, I feel finally as though I am climbing back towards the surface. I know the chemo will be awful, but it feels almost like a purification process.

Yesterday I began my next image. I have had to put my nest picture on hold until I have more strength and movement to collect sticks and shoot from scaffolds. In January, 2019, Mum and I did an enormous Europe trip. It was cold and snowy, full of magical castles and ancient churches. On the banks of the Vltava River in Prague, I took photos of white swans. I’ve always wanted to use one of these swan images in my work and so I have begun to develop that idea further. I am still incredibly tired and my movement is limited so I decided to start a project that I could do sitting here on my couch. I have started making a piece inspired by a traditional Eastern European headdress and an embroidered dress. I am drawn to the idea of creating an image that is white. I’ve decided to use calla lilies. The word calla comes from the Greek word for beauty and the flower represents new beginnings, rebirth and purity. Swans are associated with grace, peace and love. This image will be soft and peaceful, but strong - the start of a new chapter - a turning point.

Mar 29

Its 6:37pm. I’m sitting on couch after drinking a strong gin. Mum and Dad are on their way. I just got back from meeting my oncologist. It was hectic. I went alone because I thought it would be straight forward - explaining the chemo, booking the dates. I was wrong. He told me how aggressive and large my cancer was. He told me that it was very serious and that he was very concerned. He said it was 4.2 cm and the fact that it was in eighteen out of nineteen nodes was worrying and that it was grade three - the most aggressive it could be. He has said I need to go for another scan and if we find out that it’s spread, then chemo is off the cards and we look at managing it, not curing it. I asked him about the scans I’d already had and he said they more information about the cancer now. It was so aggressive that it could have spread since the last scans and now a more detailed scan was needed. It hit me like a tonne of bricks when I realised that if I had waited and had my surgery as a public patient, it would have almost certainly spread. If there is spread chemo is off the table. If the scans are clear then I start in two Mondays. I never thought I’d be hoping for chemotherapy.

My head is spinning. I managed to get in for my PET scan tomorrow and I’ll get the results on Thursday. He said he wants to see me in person incase the news in bad.

The appointment today was the first appointment I went for alone, and the first I wish I taken someone. I was in with him for more than an hour. There was so much information. He was very thorough in his explainations and genuinely seemed to care. He told me that he’d make an appointment for Thursday at his room in Maitland so I could get the results face to face.

If my scans are clear I go for an education session about my chemo next week. I feel like I’m back at the beginning again.

30 Mar

It was a long and hard day today. I didn’t sleep last night and had a few drinks, so woke up feeling a bit rough. I had to fast until my scan at 12:00pm so the morning dragged on and on. I hadn’t had a PET scan before. Dad drove me and Mum came in to wait for me while I had it done. It took about two hours. I was ushered into a small square room with a big reclining arm chair in the corner. I was told I couldn’t bring anything in with me, including my phone. The nurse sat me in the big recliner and attached a cannula. She tucked me in with a blanket, dimmed the lights and told me to sit quietly for an hour while the radioactive stuff was fed in through a drip.

At the end of the hour, I was ushered into the room with the machine and told to lay on the conveyer belt. The scan was slow - around 40 minutes. When it was over, we went home. The afternoon was long and I was not looking forward to another sleepless night. The idea of having to wait until Thursday to know, and the thought of that moment when I am called into the doctor’s room to hear whether I would live or die made me sick to the stomach. I just couldn’t believe I was back here. Waiting for a verdict on my life.

It was 6:30pm when my phone rang. I answered it even though it was a private number. It was my oncologist, Dr Paterson.

“Your scans are fine, Renee.” He said, with the sound of children playing wildy in the background. “I thought I’d save you the agonising wait.”

Another of the enormous moments in the journey.

I’m back to being the luckiest girl in the world.

8 APR

Yesterday was one of those hard days. I woke up feeling flat and that slowly progressed throughout the day to a slump of depression. I woke up early, did my post op exercises, pushed myself to twenty minutes on the treadmill, drank green tea instead of coffee, made an appointment for a pre chemo heart scan - everything positive, everything right. It didn’t really help. I think it’s that feeling of fatigue. I have been dealing with this for three months now and it’s really only just begun. By the time the evening came around, I felt like I was on the verge of tears.

I’ve woken up feeling a bit better this morning. Each day, I’ve been working on the next image. I haven’t really been able to get on a roll with it. I have made the top and am now beginning to embroider and bead it. I have also been going back through the other images and tweaking them.

10 APR

Once again, it’s early Saturday morning. I’m sitting on the couch listening to the magpies singing out the window with the news on quietly in background covering the passing of Prince Phillip. Yesterday I went and had my hair done. My beautiful friend Ros made me an appointment when I told her that I needed a good chunk off before chemo starts in order for the cold cap to do it’s best work to help me retain my hair. After my hair appointment, I went back to the oncology rooms at the hospital for my chemo education session. The nurse walked me through the whole process and what to expect. I got to see the room where it happens. There were a few people reclining in large chairs receiving their treatment. Everyone there was quite old, but they were all smiling and the nurses were lovely. I front up on Monday morning and it’s my turn. Marcie is going to come with me for the first treatment. I am very nervous, but I can do this. I also don’t have a choice.

New hair

Tonight, my brother and his partner and Marcie’s friend/cousin are coming over to celebrate my birthday which falls next Saturday - a pre-chemo party.

12 APR

Chemo day has arrived. I slept really well last night. It was the first cold night of the year. Marcie and I are being picked up at around 10:00am and I begin the treatment at 10:30. I’m not even sure if I’m scared or nervous or both.

13 APR

Day One Post Treatment

It’s 7am - I’ve been up since 6. I fell asleep at 9 last night feeling more fatigued than I’ve ever felt. I feel pretty awful - so tired, maybe a little bit nauseous - like I’ve been run over. I had a strange, disrupted night’s sleep - very deep and then then awake and uncomfortable. It’s a chilly 9 degrees this morning. I got up an made a pot of green tea and dry toast so I can take my dexamethasone to help my nausea and fatigue.

The process of getting my chemo was actually quite smooth and uneventful, if not long. I arrived at 10:30am with Marcie. I was allowed a visitor for my first session, but due to covid restrictions will have to do my next ones alone. Not long after I arrived I was checked into the room - a hospital ward without beds, but recliners in bright colours around the edges of the room. I was given my first drugs - a tablet to prevent nausea and vomiting and a couple of paracetamol to help with the pain and headaches from the cold cap. I was then fitted with my cold cap and hooked up to a machine that pumped freezing water through a plastic swimming cap like hat, getting down to an icy 4 degrees. I was told that its awful for the first 20 minutes, but if I can stick it out, my head would go numb and I would be able to tolerate it for the next five hours. The amount of protection it would give me against hairloss is worth it.The nurse then put in a cannula and gave me my first dose of Dexamethasone (a steroid to help with nausea, vomiting and fatigue) intravenously.

The cold cap was brutal for that 25 minutes - agonisingly cold and despite the panadol, induced a nasty cold headache. Sure enough though, after about 25 minutes I was pretty numb.

The nurse then bought me a lemonade icy pole to chill my mouth cells down to protect them and my first chemotherapy drug was administered slowly and cautiously as this was my first treatment. It was in a small fluid bag and a bright, ominous red colour. After an hour or so, when the bag was empty, they flushed through the line with saline and began my second treatment drug. When the second drug was finished - around 40 minutes, the saline was put through and I had 90 minutes left with the cold cap on. I felt nothing remarkable as I was infused with the drugs.

We got an Uber home (I wasn’t allowed to drive myself for my first treatment) feeling pretty tired and out of it. It wasn’t until I got home, changed into my pyjamas and curled up under a blanket on the couch that it hit me like a truck. Fatigue and brain fog like I’d never experienced. I called Mum to tell her about the day and was struggling to make sentences and remember words. The drugs I’d been given protected me from nausea, but still a little crept in. I showered and climbed into bed at 7:30. I was asleep just after 9pm. It was a strange night; deep, heavy bouts of sleep and then restlessly waking, unsteady on my feet walking to the bathroom.

I think I’m going to have to learn some serious lessons over the next few months. I need to learn how to be patient with myself and to take it easy. I need to learn how to listen to my body and just stop and rest. This is such a struggle for me - the idea of doing nothing induces feelings of terror.

14 APR

Day Two Post Treatment

I fell asleep at 9pm last night and slept deeply until 3am. I woke up and couldnt get back to sleep until after four. At 6:30am I got up to start the day and ended up sitting on the foot of Marcie’s bed crying. I have never felt this bad in all my life. How can I sleep so long and feel like this? Like I’ve been hit by a bus. Head ache, nausea, crushing fatigue… everything awful. I got back into bed and Marcie made me a pot of green tea and some plain toast so I could take my Dexamethasone for the fatigue and nausea.

I spent the day on the couch yesterday. I bravely gave myself the injection required to boost my platelet production after the treatment and worked on the beading and embroidery for the dress for the next shoot when I could manage it. Mum is coming to stay today. I just need all the help I can get at the moment - for the first time really I can ever remember. I almost feel like I’m on the verge of a panic attack - how can I feel this bad? I have read every document, collected all the leaflets, listened intently to the doctors and nurses, but it has still hit me by surprise.

24 APR

Once again, it’s pre dawn on a Saturday morning. This weekend marks the end of my first two week chemo cycle… and it has been a wild ride.

After my last entry, I went very quickly down hill. Until the next Tuesday - seven full days, I experienced the most crushing fatigue and sickness I have ever known. I barely had the strength to move and my world consisted of my bed, the bathroom and the lying on the couch when I could manage it. On Thursday we contacted the oncology nurses for advice and they insisted that I rush up to the hospital for a blood test, believing that perhaps my haemoglobin levels hadn’t bounced back and I might need a blood transfusion. We got there at 3 and was admitted, my bloods were taken and I was put straight in a bed. Mum stayed with me until visiting hours ended at 6pm waiting to see the doctor. He came by ten minutes after she had left to tell me my haemoglobin levels were fine and my extreme reaction was ‘just one of those things’. The nurse stayed after he had left to talk to me and said that sometimes people can just get totally smashed by the first cycle and it should improve. I’m clinging to this now. I just don’t know what I will do if I have this reaction every time. I can’t care for myself or get out of bed, let alone go to work and maintain my life in any way. The doctor had said I could go home if I wanted - it was getting cold outside and it was already dark. I called my brother and he and Mum came straight up to collect me.

The new school term started on Monday and I was meant to be there. I messaged my boss on Sunday telling him I was going to try to get there Thursday. He was, as he always is, understanding and compasssionate.

On Tuesday, Mum went home and I actually managed to drive to the dog park. Being out was amazing. I came home and slept for three hours.

Wednesday was even better and we ventured out to the park again - I made it through the day with out a sleep!
Thursday I got up, got dressed and went to work. The walk from the car to the staff room was the longest distance I’d walked in a fortnight. It was lovely to see everyone and although by lunch time I was exhausted, I made it through the day.

Yesterday I really turned the corner. I felt amazing. Marcie had woken up at 4:30am to get the train to Sydney for work and I found myself wide awake. I got up and made my tea in the dark. I felt clear and energised. I did a full day’s work, came home and walked the dogs around the block, picked up Marcie from the train station at 6pm and stayed awake until 11pm.

I go back for round two on Monday. It’s so counterintuitive to be feeling this good after the hardest seven days of my life (health wise) only to head back in to make myself sick again. I guess I have to trust process.

Yesterday I had a call from the Mater Hospital where I will be having my radiation done when chemo ends. They wanted to book in an initial consultation with the doctor. I hadn’t even begun to think about that process. Sometimes it feels as though it will never end, but I keep focusing on Christmas. September will see the end of chemo, then radiation and my hormone therapy treatments begin. Surely by Christmas the worst will be over.

On a side note, this coming chemo cycle is the one where I may lose my hair. So that’s something else to think about.

* * *

Over the last few weeks, I have been unable to work on The Garden in any way. My head was completely clouded with fatigue and my body didn’t have the strength. For four days, I didn’t even open my laptop - unheard of for me. I will try to get some of the embroidery done for the dress today. Unfortunately the project has slowed right down. There’s nothing I can do about it and I can’t let it get to me. The nurses keep telling me I have to take it easy on myself, be kind and understanding to myself, to accept that somedays I have to do nothing - I have no choice. That has been one of the hardest things. I am wasting days. But I need to remember that I am wasting days saving my life. Maybe not such a waste after all.

Marcie bought me a blowup birthday dinosaur. That is my crow friend on the balcony.