And so it all kicks off

Today is Friday, and on Wednesday this week I had my first chemotherapy session. I can officially report that it's Not Much Fun. But I'm doing okay. Here's how it all went down.

I only got the call on Monday that my appointment was to be on Wednesday, so after a prolonged few weeks getting test results, they are now moving quite quickly, which I'm pretty happy about. Wednesday is my regular day off work (I only work 4 days a week) so I already had a load of Life Admin planned (you know, appointment at the bank, sight test, getting a bed delivered etc) but luckily it all fitted in timing-wise for me to be free for my heart echo test at 1.15pm.

I did, however, still have a list of things to buy in order to feel fully prepared for chemo, so Tanai and I went on a little shopping spree on Tuesday evening after work, to get the last few things. In my 'project manager' approach to all of this, I had made a list of things recommended to have on standby following chemo, which included: a water bottle (I had to thrown mine out a while ago so needed a new 1-litre bottle) as apparently you become dehydrated following treatment; lip balm and unscented moisturiser (for the same reasons); a thermometer (so I can accurately record my temperature under the tongue, and if it goes above 37.5 I have to immediately go to A&E); hand sanitiser (for guests, as I will be susceptible to viruses); rubber gloves (to protect my hands while doing the washing up, as my fingernails are likely to fall off, ew); Corsadyl mouthwash (another side-effect is mouth ulcers, so this is an attempt to ward those off); light ginger beer (apparently this is good for nausea); boiled sweets (to eradicate the metallic taste you get while having chemo) and dark nail polish. This last one is interesting: I've read in various places that wearing dark nail polish reduces the risk of your nails falling off, and apparently there are now medical trials being conducted to verify this hypothesis. I went to Whole Foods and chose an eco matte blue, which feels weird as I never wear nail polish, but may as well try it!

A lovely cardiologist, V___, conducted the heart echo test, which is an advanced ultrasound of the heart, where high frequency sound waves are emitted and they measure how they bounce off the heart. She put some electrodes on my chest and used the probe to see my heart, and then took various measurements. From these I will get my 'ejection fraction' number, and they will keep testing my heart every 3 months. If my ejection fraction goes down by more than 10% they will alter the dosage of my chemo drugs, or pause treatment. I have to say, it was pretty cool seeing my heart beating there, on the screen.

Then Tanai and I came home for lunch before heading back to St Bart's for my 3.30pm chemo appointment. I'm so lucky to be living only a 5-minute walk from my hospital, it will make the next few months so much easier. I have been watching some videos made by Victoria Derbyshire, which, as an aside, I highly recommend. She is a BBC Two news presenter, and was diagnosed with breast cancer in 2015. She made 6 x 15-minute diaries about her treatment and they do go towards demystifying the process. She had to drive an 80-minute round trip for her Radiotherapy, every weekday for 6 weeks! So I feel very grateful that I have access to great treatment, for free, just a short walk from my home.

Another thing everyone has been telling me is that my tastebuds will be nuked by the chemo, so I won't be able to taste anything. To be honest, I think this is the side-effect I'm least looking forward to, as I absolutely love my food! For my 'Last Lunch' I made poached eggs which I placed on top of avocado on toast, sprinkled with salt and pepper and a dab of pesto. Simple but delicious.

And so, to the chemo clinic, which is on the 7th floor of St Bart's, with some great city views. I had a little chat with a nurse who gave me the low-down on what to expect over the coming months, and was then seated in a comfy chair to have my anti-nausea meds first. The nurse, N___, put a cannula in the back of my left hand, which is a needle attached to a screw valve that they can attach a number of different meds to, so that they don't need to place a needle in my vein for every new drug, and they started with a flush of saline to check the line. In true Carmel form, I only went and fainted! Ha ha. It was actually pretty scary for Tanai, who has never seen me faint before, and apparently had to hold my head up while I stared at him with vacant eyes and purple lips, completely lifeless! The nurse hit the panic button and within seconds there were about 12 people round my bed, reviving me, shoving an oxygen mask in my face and making sure I was okay. I came round, with the usual disorientation following a fainting, and called for Tanai. Just a temporary setback though, we pressed on with treatment. Most of the drugs were fed into my hand via intravenous drip, suspended from bags hanging from a tall drip stand. The nurse hooked up each bag on there, set a timer and then popped off to do whatever other stuff she had to do. Tanai and I had brought mags and books to pass the time, but in the end we just chatted, it all felt so strange and new. After the anti-nausea meds, the first chemo drug I had, doxorubicin, is a bright pink colour, and cannot be given by drip, but has to be administered by hand, by the nurse. She screwed a huge plastic syringe onto the cannula line, which was merged with a saline line, and she hand merged them, slowly allowing the drug to go in. Every now and then she pulled the end of the syringe, just to pull a bit of blood out of my vein, to check that it was all going in the right place. It was kind of cool, seeing it all happen, and I couldn't feel a thing. No pain, no nausea, just a little chill and a blossoming fatigue. Luckily, we had brought a big red blanket from home, so I was nice and warm. The next drug, cyclophosphamide, was administered by drip, and then I had a little bag of saline, to 'flush out my veins', and then I could go home!

Receiving chemo

Most of the other chemo patients were much older than I am (I suspect this will usually be the case), but to our left were a French couple, and she was my age, so I got chatting to her just before I left. She had tried to 'cold cap', which is where they place an ice cold cap on your head in an attempt to prevent hair loss. They literally bring your head to an induced hypothermia. I had decided already that I didn't want to do this -- the results are variable and it sounds really horrid and gives you headaches, but she had tried it and didn't like it at all. She has two daughters though, and thought it might make it easier for them if she keeps her hair. I told her all about my headwrap shopping, and shared the secret facebook group I have joined, for those who have been diagnosed with breast cancer under the age of 45. I hope she joins it, as it has given me so much help, support and strength.

We got home around 8.30pm and Tanai made dinner. I had heard that I should categorically not have my favourite food straight after chemo as you can often hate that meal for a long time! Tanai joked that he should make me cucumber salad (cucumbers are the only things he doesn't like, so he thought it would be handy if I didn't like them either!), but instead we had a simple pasta, and I wanted to sleep pretty soon after. As I am still waiting for my belongings to be shipped over from Australia, we have been sleeping on a sofabed, but some wonderful friends have lent me their spare bed for the next three months, so I can convalesce properly and not simply turn the living room into a sick room. It was so nice to be able to sleep in a proper bed after chemo, so thanks Jess and Martin!

Now, despite my positive attitude, I have to share that the first night was really rather horrid. I woke up at 23.15 and 02.22 with horrific, overwhelming nausea. I didn't actually vomit, which I'm thankful for, but it was overbearing and very unpleasant. I slept fitfully and woke up feeling extremely nauseous too. I felt as though the chemo drugs were so strong and powerful, and they were finally making their way through my small, fragile body. It was not a pleasant feeling. Thursday, my first day post-chemo, was a quiet day. I am on a cocktail of anti-nausea meds. Four different kinds which need taking at different times, some with food, some before, some two tablets twice a day, some one tablet 3 times a day (yes, I made a chart!). I stayed in my PJs all day, pretty much just moved from the bed to the sofa, and did very little. Tanai made sure I ate little and often, but I had absolutely no appetite. I desperately hoped these feelings would not last long.

Thankfully, today has been a much better day. I slept quite well (although woke up about 8 times in the night to pee! Drinking all this water to stay hydrated is having its own side effects) and took a bath this morning. I actually put some clothes on and, shock horror, we left the flat! We just went for a short walk through some local parks, to St John's bakery to buy some hot cross buns, but it was good to get out of the house. I was totally drained after half an hour though, which is a strange feeling. I have been eating much more today too, although things do taste a little funny, metallic, and weird. I introduced Tanai to one of my favourite films, Stand By Me, and now I'm updating you all as to my progress while Tanai cooks a wholesome and restorative chicken soup for dinner.

Made it out of the house! Resting in the Garden of the Order of St John

I am keeping a symptom/side effect diary, where I am noting my symptoms, the timing of them and their severity on a scale of 0-10. I suspect I won't remember many of the details, so this will be a useful record, but also an indicator of what to expect next time, and I can share them with my oncologist in case they are useful for her. Generally, I'm getting small waves of nausea, I am extremely low on energy, feeling fatigued, colder than usual, and having small headaches periodically. But really I feel fine. I'm taking my temperature regularly and it's riding a nice line between 36.3 and 36.6, so pretty normal.

So there we go, one chemo session down, only 7 more to go! (Actually not really looking forward to that prospect, but there's a light at the end of the tunnel.) My next session is on Monday 8 May. I will keep you updated as to how I go over the intervening weeks. And thank you all so much for your overwhelming support. I've had such lovely messages, from texts, to emails, to lovely cards in the post offering practical support. It's all made me feel happy and strong, to know I have a wonderful support group all over the world sending me their energy and happy to do whatever it takes to help me get through this. Yesterday I received a lovely parcel of cotton PJs from M&S, courtesy of my mum, so I can wear fresh PJs every day. And some beautiful white orchids from Kim to liven up our home. And so many other little rays of sunshine have come our way. I will try to respond to all the messages but there are so many, please be patient with me, and know that I have received them with such gratitude and wonder. I'm truly so lucky to have such amazing people in my life.