Bye bye bob, hello headscarves

Tonight I braved the shave. This morning my hair started coming out in large clumps in the shower, and I just couldn't face a few weeks of gradual hair loss. So on my way into work I popped into boots, bought an electric razor, and asked Tanai to shave my head after work.

I decided to use this as a positive moment, to take back some control and channel Grace Jones. I popped her on spotify and we prepared to get rid of my lovely bob.

Channeling Grace

Last photo of the bob!

Tanai gets to work

All done!

All gone

No need for these any more

I thought I would feel upset but actually I didn't. I simply felt liberated, and glad that I got rid of the hair before it started to slowly fall out of its own accord. It was strange looking at myself in the mirror, with my newly naked head, but also quite lovely having nothing obscuring my face, and I feel light as I walk round the flat. A dear colleague, Hannah, sent me a lovely email this afternoon with some thoughts written by a woman who had shaved her head for Womankind International. They are all really positive and I felt as though I could really relate to some of them. Think of all the time I will save, not having to blowdry and style my hair every other day! And now my hair won't get in my face during yoga when I'm in downward dog. I'm perhaps a little bit sci-fi, like a fembot from the future. And hell, not only can I have Grace Jones and Sinead O'Connor as style icons, but also Mahatma Gandhi and Bruce Willis!

I tried on a few of the headscarves I've bought, to see if I can fashion the styles I'd seen on YouTube. I think it will take a little more practice, but at least I'm making a start. Over the coming weeks and months I'm sure I will get better at it, but here are some of my first attempts.

This beautiful scarf was handpainted by my friend Bree and arrived in the post the other day

Even thought I'm wearing my PJs I'm also wearing some gorgeous lipstick that just happened to arrive in the post today from my cousin, Catherine. Thanks! I love it. 

I think so far the pink turban is my favourite style. But let's see how I go. Now I'm slightly chilly, so probably also need to get a sleep cap or something. Luckily we are heading into summer.

So there it is. No more hair for at least the next few months. Let's hope my eyelashes and eyebrows (what little I have of them) take their sweet time to disappear.

CT scan

This morning I was back at St Bart's for a CT scan of my chest and pelvis, in the imaging department. I've been here a few times: for my MRI scan, my bone scan and now my CT scan. I'm becoming quite a regular! I arrived this morning and they were running about an hour and a half behind schedule. I mention this because for all my many appointments, tests and treatment, this is the first time things haven't run to time. Quite a feat by our wonderful NHS. As I was waiting in the foyer I looked around the atrium at the lovely view. The outside of the building features the original stonework, but inside the King George V wing it's all light, airy and modern, and there are even trees in the atrium! It's a wonderful building.

When they finally got round to me, I was seen by another nurse, G___, who put in yet another cannula, which you would have thought I'd be used to by now, but unfortunately I'm not. He tried my left arm first, but it didn't work, so we had to do the right arm. My arms are now very sore. After he'd tested it with a vial of saline I was dispatched to the waiting room and told to drink three glasses of water. The patient after me was an older lady, with a woolly hat on, and she went into the treatment room. Her companion, a white-haired old lady of at least 70, promptly sat next to me and engaged me in conversation. I have noticed thus far that there's an unwritten rule about showing courtesy to patients, not asking too many questions, and not inviting yourself into their personal space if they are not willing. Well this lady didn't seem to care about any of that! Her opening line was 'So where've you got it, then? Your breast?'. Crikey, talk about cutting to the chase, lady! Actually I quite liked her frankness, and we had a great conversation about what's going on, what in her mind is the best way to tackle things ('a positive mindset') and how ridiculous it is that 'they're trying to get us all to drink so much water'. She clearly thought this was absurd. When the nurse came to get me for my scan, she said 'Good luck missy, have a great life'. What a fabulous old battler, she really put a smile on my face.

The CT scan uses a 'donut'-like machine, similar to the one used for my bone scan. I had to lie down on a flat bed which moved to push me in and out of a donut which scanned the relevant parts of my body. The technician, B___, pushed some dye into my veins through the cannula just before this happened, which the scanner then picks up. This was a high pressure dye, and just before she commenced, she warned me about the side effects. She said 'You might get a metallic taste in your mouth, your body will suddenly feel flushed and warm from your fingers to your toes, and you will feel as though you're peeing, but don't worry, you're not peeing'. Within three seconds, all of these side effects kicked in! It was so strange (especially the part where I thought I'd wet my pants).

The machine then quickly scanned from my neck to my pelvis and then I was good to go. I will get these results, and the results of my bone scan, when I see Dr S___, my oncologist, next Friday.

After my scan I had booked a contact lens check up and a sight test, which is a little overdue. I was chatting to the optometrist about how the chemo is drying my eyes out and I feel as though the contact lenses are getting a bit scratchy towards the afternoon each day. We have decided to switch my lenses from monthlies to dailies, which should help with this, but also reduce the chance of infection, as I'll throw the lenses away at the end of each day, so won't be putting the same ones back in my eyes each day. This will give me peace of mind, as I'm much more susceptible to infections while I'm on chemo. She has also advised that I wear my glasses at least a couple of days a week, to give my eyes some rest.

Now I'm back home and cooking a fish pie for dinner. (I still have my mashed potato cravings so I'm working my way through all the recipes I know that feature mashed potato!)

Pregnant with a tumour?

I've always been honest about the fact that I've never had any desire to have children. Where once it was a vague 'I don't see having kids as part of my life plan', in recent years it became more of a mandate to change society's perceptions of women childless by choice, and re-write the tired old narrative that women without kids were somehow 'selfish, shallow, self-absorbed', or worse, failures. I love being 'Auntie Carmel' to my friends' kids, but nothing about any part of the process of bearing children has any appeal to me personally. Back in my single days, when people would condescendingly say 'You'll change your mind', or 'You just haven't met the right man', I'd retort with 'Imagine looking at a pregnant woman's bump and telling her she'll soon change her mind, you'd be shot!'. I loudly and bolshily defended a woman's right to choose, probably to the severe irritation of my clucky, maternally-inclined friends. I have even been known to respond to a friend's pregnancy announcement with an involuntary, 'Why? Why would you do that to yourself?'. And let's not get into the story of how I accidentally came to be at my nephew's birth, saw the whole thing in all its messy glory, and ran away to the nearest birth control clinic, my ovaries shrinking in horror. On my first date with Tanai, I casually mentioned that I didn't want kids, and when I asked him to marry me (two months later, yes, total badass) I reminded him of this little fact. Thankfully, he doesn't want to have children either, although I suspect his reasons are more linked to climate change, so we are both happily child-free.

Imagine my amusement, then, as it slowly dawns on me how many parallels there are between my current situation, and being pregnant! Now I know this sounds strange, but bear with me. First of all there are the chemo side effects.

Nausea: an obvious one, the nausea equates with morning sickness, and the recommended remedies are the same. Mothers at work have all been telling me to drink ginger beer, ginger tea and eat ginger biscuits. Even the meds I'm on for the nausea are given to expectant mothers.

Cravings: I knew that my tastebuds would be affected by the chemo, but no-one prepared me for the cravings. Since last week I have had intense cravings for salty, stodgy food. Mashed potato, marmite on toast, even bran flakes, which I've not eaten for years! I've totally gone off sweet things, wine tastes disgusting (this makes me very sad), but if it's got carbs or protein content, bring it on!

Sleepless nights: I'm having very erratic sleep patterns at the moment. A combination of nighttime nausea waves and having to get up to pee every 2 hours because of the gallons of water I'm drinking all day. My pregnant friends tell me it's the same when you have a bump pressing on your bladder.

General fatigue: sometimes when I do something relatively minor, such as catching the tube to work, or having a shower, I rustle up a rapturous round of applause complete with whistles and cheering in my head. Because, frankly, I deserve a bloody medal for the smallest things nowadays. My energy levels are severely depleted and everything uses up about 10 times as much energy as it used to. Again, see above!

And then there are the obvious but admittedly slightly creepy parallels. In the early stages of my diagnosis, I met up with an old friend and disclosed my news. She then revealed that she was about 9 weeks pregnant. I've been pondering on our future trajectories since then. We both have something growing inside our bodies. Over the next 6 months, I am taking steps to try to reduce the size of that growth, while she will be feeding hers and encouraging it to grow. As well as the side effects listed above, we are both conscious of the ways our daily habits affect the success of our endeavours, eating healthily, looking after ourselves, dealing with reduced immune systems. Our respective employers will be flexible with our working arrangements to accommodate our needs. And then, around the same time, October sometime, we will both have these growths removed from our bodies, and hope for a successful outcome. The only difference I can perhaps perceive, is that I shall hopefully get off scott free once my growth is removed: if the treatment is successful and I emerge cancer-free, I will finally be able to get on with the rest of my life, and become my healthy, energetic, independent self again. Whereas she will be stuck looking after her 'growth' for at least the next 18 years!

Okay, so perhaps that last part was a bit flippant, but still, the similarities are uncanny, don't you think?

Dem bones

Today I had a full-body bone scan, in the Nuclear Medicine department at St Bart's. I had to be there at 11am in order for them to inject some radioactive tracer into my arm. Then I had to leave for a while, so that the radioactivity could do its thing, and come back to the hospital for my scan at 2pm.

In the interim, I had lunch with my friend Eva, who has just come back from holidaying in Argentina, and she joined me at my wig consultation. The NHS supply free and subsidised wigs for cancer patients, and there is a lovely woman called Vicky who has a shop in the ground floor of the West Wing of St Bart's, where she fits wigs for people, as well as headscarves, prosthetics, and other services. I had hoped it would be a fun trying-on session but unfortunately Vicky just supplied us with a catalogue, filled with rather un-cool looking chavvy ladies, with names like 'Shonella', and we had to choose from the pictures. There was only one style that I really liked, so I've ordered that in three colours, and I will get to try them on next week. But at least it was a fun excuse to have lunch with Eva! As I mentioned before, I'm still on the fence as to whether or not I'd like to wear a wig. I think I'd rather just rock the headscarf look as I'm not that interested in pretending I have hair, but as the NHS provide this service for free, I figured I'd take a look at what the options are, and it might be nice to have a wig as a back-up for those days when I really don't want to stand out.

I had to drink lots of water over lunch, to flush the radioactivity round my system. I'm really not quite sure how this works, when the radioactivity goes into your veins and the water goes into your mouth, but hey, that's medical science. (Edit: I just googled this and apparently it is to flush out any excess radioactivity that doesn't go into my bones.) Then I had to lay down on this machine:

They moved those two flat plates as close to my body as possible and then s.l.o.w.l.y moved them all the way down my body. Apparently, if the cancer has spread to any part of my bones, the tracer will either gather there or miss it out completely, so they will be able to see from the scan if there are any areas where there is either too much or too little tracer.

As the nuclear technologist operating the machine, R___, reminded me, the machine isn't radioactive, I am! Apparently I am not allowed hug a pregnant person for 48 hours. Stay away, pregnant people!

So now the scan is done I have to wait for the test results, which will go through to my oncologist before I see her next. I also have a CT scan next week, and will get even more blood tests to see how my first round of chemo has affected my blood.

A little update on my general health. It's now Day 9 of my first chemo cycle, and I'm feeling really good. I had two days back at work before my day off today, and although I was still a little spacey on the first day, by yesterday I was almost completely back to my usual self. Much more energetic, coordinated and with my cognitive abilities intact! I'm still very tired in the evenings and have been getting afternoon headaches, but nothing to be worried about. Today I walked the farthest I have walked since chemo. Walking is one of my favourite things, and definitely the key to my good mental health. I love walking, and often choose to walk the hour to work, along London's canals, listening to audiobooks or podcasts, and enjoying every element of it. Since chemo I have had very little energy so walking has been crossed off the list, much to my dismay. I have tried some little local walks but am fatigued after only 15 minutes. Today I had to walk into uni to hand in a deferral form for one of my assessments (I have an essay due on Monday which Chemo Brain will not allow me to do!), which at my usual pace is a 40-minute round trip. I walked at a slower pace than usual, and stopped on two benches each way, but I made it there and back with no dramas. Hurrah! Also, the pauses were pleasant. I walk through a lovely old building to uni called Waterhouse Square, a magnificent old red brick facade with leaded windows and slate roofs, and while I paused on a bench I noticed a plaque I'd never seen before: Charles Dickens, novelist, lived here. The things you notice when you stop for a while.

The buildings in Waterhouse Square

Charles Dickens lived here

My other bench view on my journey to uni: the old trees in Lincoln's Inn Fields

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.

And... go!

So, quick udpate to say my chemo date it set. And it's tomorrow! I will have a heart echo test at 1pm and chemo starts at 3.30pm. Got a few last minute things to get today after work (eg thermometer, mouthwash etc) but apart from that, I'm all set. I'll update with more detail once I have some time but just thought I'd keep you all updated.

Pre-treatment fun

In a few short days treatment will begin and no doubt my day to day life will change significantly. Knowing that I will soon embark on a period of at least 6 months where my ability to enjoy certain things I love (food, travel, the energy to do loads) will decrease, has made me more fully appreciate some of the fun of the last few weeks. With my prognosis imminent, our long-planned weekend in Heidelberg for Tanai's birthday, for example, took on a new importance. We flew to Frankfurt airport for the last weekend in March, and my aunt and cousin picked us up. My mum's brother, Paul, his wife Milena, and their two children Liam and Antonia have lived in Heidelberg for many years, and I have visited them often, but this was Tanai's first trip there. It's such a beautiful town, and we were lucky enough to have gorgeously sunny Spring weather for the whole weekend. We were spoilt rotten by my family, who cooked us delicious food, entertained us and ensured we had a thoroughly wonderful time. Paul played tour guide and we visited Heidelberg's famous castle, sampled some of the local beer, and of course pork, potatoes and sauerkraut. For Tanai's birthday we had a delicious meal in a Bulgarian restaurant, where the boys had whole spears of meat and Milena and I enjoyed Bulgarian ratatouille. And we cycled to Schwetzingen palace, where there are some stunning gardens and the cherry blossoms were in bloom. Milena and Antonia treated us to a fascinating night at the theatre, where we saw a contemporary dance piece and ended up having bubbles served on the stage by upside-down dancers! The sunny weather definitely helped me feel rejuvenated, and it is always great to get away from London for a long weekend. We walked and cycled past allotments, fields and the bustle of Spring was around us. It was also great to think about things other than cancer for a while! I'm sure I'll love similar distractions over the coming months.

Our hosts, beneath the cherry blossoms

With Tanai in the wonderful cherry blossom garden

Paul and Tanai overlooking the castle and the river

Liam and Tanai and the spears of meat!

Being served by upside-down dancers

Riding in the laneways of Heidelberg

The spring weather has also been lovely during the days at work, as we have a deck on our fourth floor and can now sit out there during lunchtime, and even for some after-work drinks. This week was bitter-sweet for me as one of my team members was leaving. Only two days before we'd had team karaoke and we'd belted out classics together, and now I was saying goodbye. Phil is my favourite office DJ, he makes me laugh every day and I will really miss him.

On the roof of the office

Belting out Rocket Man with Phil

Team Awesome karaoke

Following my recent hair-loss worries, yesterday two of my girlfriends took me shopping to the fabric stores on Berwick Street in Soho, and we bought some fabric for me to fashion into hair wraps. We also watched some videos on YouTube and I practiced tying some fabulous African-inspired hair pieces over my head. It was a lovely day hanging out with them, and now I'm a lot less worried about losing my hair, as I feel a whole new style coming on! I'm even considering not bothering with a wig, and just going with scarves the whole time. I'm keen to buy even more brightly-coloured fabric and making some fashion statements. But at least now I am prepared for the inevitable.

So much fabric!

With my fabulous shopping companions

Bus fun!

First attempt at a hair scarf (youtube vid in background)

Another thing I'm concerned about is losing my tastebuds during chemo, and not being able to taste the delicious food my friends cook! So today we went to my friend Taey's house for lunch, and she made amazing slow-cooked short ribs which she'd marinated the night before. They were so tasty, Tanai could not stop talking about the food all the way home. I love Taey's cooking and the thought of waiting another 6 months before I can taste it again makes me sad, but it will taste all the sweeter after I'm done with the chemo. It was also lovely to see how little Marou is growing, he is so happy and chilled out, a lovely little boy. Not sure how much I'll be able to hang out with my friends' kids over the coming months either, as I'll have a low immune system and they are basically human germ-factories, so I'm getting my fix now.

Storytime

Tomorrow I will probably find out when my first chemo is and then it's action stations. Until then, I'm having a relaxing evening with a dark chocolate Lindt bunny and a book on post-colonialism.

Changing directions

When they say cancer is a rollercoaster, they are really not kidding. This week was definitely testament to that. On Thursday I finally met my oncologist, Dr S___. I instantly loved her, and I know that we are going to get on; she's my kind of lady. An older, Indian woman with a whole heap of experience, she has worked all over the world, run medical trials, presented at conferences and is a total cancer rockstar. And she has a no-nonsense, pragmatic attitude which suits me down to the ground. She talked me through some options but on Thursday they were still awaiting the results of the HER2 test which could potentially make a significant difference to my treatment plan.

As an aside, each time I visit anyone for a consultation at St Bart's, they write up the consultation outcomes and send them to my GP. I get a letter in the mail (yes, snailmail) which is a 'cc' of the letter which goes to my GP. The last one, from my surgeon, Miss L___, had contained a worrying line. It said 'I think cosmetically she would benefit from neoadjuvant chemotherapy'. Cosmetically? This is not high on my list of concerns! I care more about getting the best treatment and ridding my body of cancer than what my cleavage will look like post-surgery! Neoadjuvant means to receive treatment such as chemo before surgery rather than afterwards (which is called 'adjuvant'). I had googled this (of course) and read that chemo has the same effectiveness whether it's given before or after surgery, but it can make a difference to the surgical outcomes (for example, make the tumour smaller so less of my boob is removed).

Anyway, when I mentioned to Dr S___ that I really wasn't concerned about any 'cosmetic' outcomes she totally stopped in her tracks. Apparently if I am HER2 negative, I could have surgery and not even need chemo at all! This stunned me. My surgeon was making assumptions about me rather than giving me options. In the same way that she assumed I would want fertility treatment, she was assuming that I was concerned about what my cleavage looks like. (In case you haven't guessed yet, this made me kind of angry.) To have made a decision about my treatment which meant that I could have unnecessary chemo was astounding to me.

Anyway, we could not make the decision until the HER2 results were in, so Dr S___ immediately stopped my consultation. She said she would chase the results but that I should consider that I may be going into surgery next week rather than chemo, as she predicted I would be HER2 negative (apparently my tumour is so receptive to oestrogen and it's rare that these types of cancers are also HER2 positive).

I then went into work rather light on my feet for the rest of the day! There is a chance I might not need chemo after all! Gosh, what a glimmer of hope.

Sadly, the glimmer was shortlived. She called around 6pm and said that I am HER2 positive and so should definitely have chemo first. Oh, and could I come back at 9.30 the next morning! So Tanai and I were back at St Bart's early this morning to get the full picture. Apparently only 10% of cancers are both HER2 positive and receptive to oestrogen, so I guess I'm rather rare. Not sure how I feel about that as I'd rather be in the statistically predictable group, but there it is. So this morning Dr S___ gave me the full low-down on chemo and I signed a consent form so that they can progress with my treatment.

She explained some of the main side effects, and some of the regular tests I'll be getting over the coming months, and why. Also, in true project manager style, I'd written down lots of questions in my blue notebook, each with a space left for the answers, so we went through those too. Tanai and I have been doing quite a bit of research: each time I get a letter with the results of the consultation we google all the acronyms and write down any questions we have, so that we can go through them in our next visit. I imagine this will become quite a routine during my treatment. So here is a bit of a summary.

I will need to have a few more tests to check certain parts of my body that can be affected by the chemo. So I have to have an 'echo' test which is to check my heart, because the drugs can impact on my heart. They will keep checking this every 3 months and if my 'ejection fraction' goes down by more than 10% they will either reduce the dosage or pause/stop treatment. I also need a CT scan and a full body bone scan. The drugs I will be on can affect my bones, my liver, my kidneys, my blood, in rare cases chemo can cause cancer (ah, the irony!), nerve damage and, to top it all, it will probably bring on early menopause. Thank goodness it will also nuke my breast cancer, otherwise this is a ridiculous thing to sign up to by choice.

The more 'regular' side effects are that I will feel nauseous (Dr S___ prescribed me some kick-arse anti-nausea medication), tired, I will be more susceptible to catching viruses, I will probably lose my hair and I will probably lose my sense of taste (this makes me very sad, but thankfully it's only during treatment, not forever). For my birthday, the wonderful Rosser family in Sydney bought Tanai and I 'high tea' at the Ritz, so I've decided to save this as my treat when I'm all done with chemo and get my taste buds back. It's great to have something wonderful like that to look forward to.

When I told her that I was planning to continue going to work all the way through my treatment she was very pleased. She said she encourages all her patients to continue working, and she said if I feel as though I have the energy, I should continue to cycle into work too! She advised that if I do want to take the tube, I should avoid the rush hour, as it's likely I will catch any germs going around.

So, once we were all done, I trotted off to get my bloods done, got my appointments booked in for my CT and bone scans, and headed into work.

All in all, I'm quite glad we're still doing it this way round. Having chemo first does mean that the surgery is likely to be less invasive, as the tumour will be smaller. Also it means I get to have Pertuzumab, which has only been licenced since December 2016 and has fantastic effects. It increases the effectiveness of the other drugs and dramatically reduces the chances of the cancer returning. But this drug is only available to patients having chemo before surgery, not afterwards, so I'm very lucky to be having this.

Tomorrow I'm going shopping with a couple of girlfriends to buy some headscarves, and we are going to work out how to tie them somewhat stylishly by studying youtube videos, as I really want to be prepared for this. Should be fun!

Hair today...

Today I had an experience I wasn't expecting. It has to do with my hair. Now, I have an interesting relationship with my hair. Throughout my life, whenever I felt a bit bored or wanted to change things, I'd dye my hair. It's been red, pink, mahogany, even blue, and I'm naturally a kind of muddy blonde. I've worn it long, bobbed, with a fringe (bangs for the Americans among you), centre parting, side parting, cropped: basically all of the styles! When I went travelling in 2014 I'd dyed it brown, but of course by October that year I was bored and so my mum and I bought some strong peroxide off a dodgy hairdresser in Corfu and bleached out the brown (it's a minor miracle I still have a scalp!). When I moved to London I had naff bleached hair and needed to sort it, to look respectable for work and feel good about myself. It's surprising how much one's hair contributes to one's image, and self-worth. So I found an amazing hairdresser at a salon in Soho, called Veronika, and we've been working on the 'project' of my hair together ever since.

Pink hair!

Hair hat

Brunette

Long and yellow (and the real throne!)

Red bob

Messy crop

Long red (idiot teen)

Long bob, pretty much where we are now.

Over the last couple of years, I've seen Veronika fairly regularly, and she's been putting low-lights and highlights in my hair until all the bleach grows out, and it's now almost all my natural colour, with a few highlights. It feels much healthier and I really love it.

Today I went to get my fringe trimmed (which I tend to do between haircuts) and when she was done, I held Veronika's hands in mine and said, 'You probably won't be seeing me for a while, as I won't have any hair for you to cut', and then I unexpectedly burst into tears. I felt so silly, crying in the hairdressers, and poor Veronika was totally shocked. But you see, when you visit your hairdresser every couple of months for a few years, you develop a relationship with them. Veronika and I chat away for a few hours when I am there. I know lots about her and her partner, their travels, her family. She knows a lot about me. She even knew I was getting married before my mum did! (I eloped last year, and when I went to her for my pre-wedding hair cut I couldn't help but spill the beans: she was so excited for me!). And now that we've just got to a stage where I'm really happy with my hair, I'm probably going to lose it all and have to start again. And I'll miss visiting her, and catching up. Anyway, I wiped my eyes, scribbled out my blog link to her and said goodbye. Hopefully, after chemo, when I have a little crop of hair (maybe around Christmas?) I can go and visit her again, and we can start our new hair 'project' together.

I think it made me realise that some things are going to upset me along this journey, and they might not be the things I expect. Here I am, being all flippant about losing my hair, buying wigs, wearing scarves, but really I think it will be difficult to maintain a sense of my identity without my hair. As much as I'd like to think I'm not 'shallow' enough for my hair to be that important to me, it actually is. Perhaps I should get a stock of headscarves at the ready before the inevitable happens.

Anyway, in other news, I've finally been able to share my diagnosis with my colleagues, which is a huge relief. I hated keeping it quiet for so long, but my results kept getting postponed and I really wanted to have some information before spreading the word wider. First I told my team, then my adjacent team, and then the Head of HR sent round an all-staff email. I suspect that was kind of weird for some people but it's so hard to tell my news to people over and over again, and I really didn't want the news to 'spread' like gossip on the work grapevine. My team were amazing and I've already had some really lovely messages of support, some massive hugs (and I'm not usually a huggy person at work!) and offers of help, which is really giving me strength. It is, however, a little strange trying to maintain a sense of normalcy -- I even interviewed a couple of people for jobs yesterday, went for lunch with colleagues, had a laugh. I mean, that's kind of what I need from work right now, to carry on and have a laugh. It's what will keep me sane through all the treatment, I'm sure. But I need to be ready when someone comes up to me randomly, in the kitchen, and says 'Are you okay?'. I just don't have a ready reply yet!