Headscarf wrapping workshop

One of the most well-known side-effects of chemotherapy is the loss of hair. This happens because the chemo drugs attack rapidly-dividing cells in the body (fast-growing cells). Their primary target is the fast-growing cancer cells, but the 'collateral damage' effect means that other, healthy fast-growing cells also get attacked. Hair follicles are some of the fastest-growing cells in the body, so these are often some of the first to go. This is also the reason why my nails are getting brittle and weak. I prepared for hairloss early on, shopping for fabric on Berwick street with friends, and as soon as my hair showed signs of falling out, I took over, shaving my hair off completely rather than waiting for it to fall out gradually.

Since then I've been experimenting with different headscarves, watching various youtube videos and trying out different styles. I've had some wonderful friends send me vintage scarves, lend me their own collection, and my talented friend Bree even sent me one of her own handpainted scarves, with a beautiful floral design. Many of the videos are by Muslim or Jewish women, who are exploring creative ways of covering their hair for religious or cultural reasons, and some of my favourites are by African beauty bloggers, as I love the way they incorporate volume on the top of their heads, making the final effect quite large and impressive. I feel as though this makes me look less as though I am 'ill' and more like I'm making a fashion statement. Now I know that no-one can ever accuse me of being fashionable in any way, but I may as well try to at least be a little stylish while I'm spending the next few months as a baldy, rather than looking like the washerwoman of yore.

Some of my previous attempts

More experimenting

Keen to expand my headscarf-tying repertoire, on Saturday I went along to a headscarf workshop at Hello Love in Bloomsbury. Hello Love is a delightful new shop on Southampton Row, which only opened seven weeks ago, and is run by the Hello Beautiful Foundation, set up by a woman who had breast cancer, with the aim of providing women with complementary therapies and nutrition information to help them while going through treatment. I've been following them on instagram after a friend sent me their link, but this was my first trip to their dojo, and I immediately loved the space and the fabulous things they have for sale. They had invited Sandra from Knots UK to run the scarf workshop, and she greeted me with a big smile when I arrived, complimenting me on the scarf I was already wearing. My friend Taey came along too as she wanted to know how to tie scarves herself, and we tried a few different styles.

This is the 'before' photo!

I love this front twist style

New ways of tying my square scarves

Not sure about this one, it's a bit 'minnie mouse' on me

Stacking some serious height

Taey and I with our fabulous teacher

Taey looking beautiful

Mastering a simple but lovely wrap style

Mid-instruction

Strutting our scarves on the streets

Sandra is from Miami, Florida, with a Nigerian heritage, and much of the fabric she sells is from Africa, with fabulous bright prints. It's a great size for doing a whole range of styles. I got some Marimekko fabric sent over from Australia recently and I think I will hem it to exactly this size as it's perfect. 

I still like some of the youtube videos I've found, but I definitely got some new styles out of the day, and Taey got plenty of inspiration too! And I came away with a fabulous new red scarf, which is just my colour. 

The afternoon was a lot of fun, and I passed another milestone too, it was the first time I'd been out in public completely bald. Although I wore my pink scarf to the workshop, I had to take it off (of course) in order to try out new styles with different scarves. At first I was a little nervous as I've never been bald in public before, but no-one batted an eyelid, even though the shop is in the middle of busy Holborn with floor-to-ceiling glass at the front. It emboldened me and I also went bald the next day when I cycled to the Tate to see the David Hockney exhibition. I popped into the bathrooms where there was a busy queue, whipped off my helmet and cloth cap liner in front of everyone and nonchalantly wrapped on my scarf. 

Who cares? So I'm bald, so what? But this is actually quite strange for so many people. I've met women who have honestly and genuinely stated that losing their hair was more traumatic for them than losing their breast, or getting their diagnosis in the first place. This absolutely astounds me, and I think it all stems from the pressure society places on women to look 'beautiful' and the attachment people place on their hair as part of their image and identities. I mean, I get that it can be upsetting to some people to suddenly lose all their hair, and being bald isn't necessarily the best look in the world, but it's just bloody hair, it will grow back! And it's saving me so much time in the mornings when I shower and get ready. And you know what, I like my face, and being bald isn't making my face any less awesome, in fact, it's obscuring it less than my hair did, and making me appreciate and love it more. 

I did get a wig, as they are provided to you by the NHS if you want them. But as soon as I put it on, I knew it was not for me. I just feel so incredibly self-conscious, and aware that I'm wearing fake hair. And everyone else will know. And as one of my friends said, it ages me by about 20 years!

Be-wigged

It's likely I will be bald until early 2018, so I may as well rock the headscarf look. And I can have such fun with so many different fabrics and styles. I think I will even continue to wear scarves occasionally once my hair grows back, especially when it's sunny and I want to protect my scalp, or on days when I can't be bothered washing my hair.

Cheers to that!

Health update

Today I had my regular visit to the oncologist before next Wednesday's chemo, which is round #3. This is primarily to check in about how it all went last time and make sure I'm okay to keep going. My oncologist, Dr S___, was not there today so I saw someone else from her team, Dr H___, a male oncologist. He was very friendly and helpful. First of all I had to describe how things went last time and how I was feeling. I explained that I'm doing really well, very few major side effects, and I've got good energy levels at the moment and have been cycling into work this week. I did mention that I'd found it quite hard in the week following treatment but I'm feeling more prepared for the next round.

He then gave me a physical examination to see how the lump in my breast was faring. After the first chemo I noticed that it had become particularly hard and was very prominent, but after the second one it had softened again. Over the last few days I mentioned to Tanai that I was having problems locating it, and that I suspected it had been getting smaller. However, I hadn't wanted to get too excited about it. Well Dr H___ agreed with me, it was definitely smaller. His professional estimation is that it has shrunk to half the size, and is now only 1.5cm! This is great news. Of course we won't know for sure until the scan after 2 more rounds of chemo, but this has definitely made me feel better about going in for round #3 next week. I feel as though I'm not on a treadmill, but I'm actually making some progress, and that even though the chemo makes me feel absolutely shit, at least I can see now that it's actually working.

Also, he had my CT scan results. I had the scan almost a month ago, but because of the recent virus infecting the NHS' computers, they could not access the results before today. Happily, the scans are all clear, so the cancer has not spread to my lungs, ovaries or other organs. This is definitely reason to celebrate.

Yesterday my friend Jana drove us both to IKEA to pick up some things for our homes. She needed some new shelves and I wanted to buy loads of plants and plantpots, and create a lovely indoor garden in our flat. We are still living in a relatively bare apartment as my furniture is on its way from Australia on a ship, but I wanted to have some greenery around me as I'm spending so much more time at home than I usually do, and I thought it would make me feel healthier and happier. I have missed being out in the countryside (I usually do a lot of weekend hiking but my energy levels are not allowing that at the moment), so I thought I'd bring some greenery inside. I'm very pleased with my first steps at building an indoor garden, and I'm inviting people to bring us clippings of their own plants to add to it! It all started with some lovely plants from Caroline, Elizabeth and Kim, and now I'm expanding my collection. Let's hope I have at least some of my grandma's green fingers.

My plant haul

Celebrating today's results with some champers!

Once again, while the NHS is taking very good care of my physical health, I'm having to look after my mental health myself. I truly believe that this is such an important part of my treatment and recovery, and both the physical and the psychological go hand in hand. I have been trying to do a small amount of yoga practice each day (when I have enough energy) and 20 minutes of mindfulness meditation. This is so important in helping me to focus, to sleep, and to ensure I retain some clarity with all these new thoughts running through my head. Last weekend I read a book called 'Post-Traumatic Growth', which is about ensuring that trauma brings about positivity in one's life. It examined the key elements of post-traumatic stress and then outlined some frameworks and mechanisms for dealing with going through a traumatic time, and remaining resilient and strong, and coming out of it with more wisdom, grace and learnings, and ultimately with positivity rather than PTSD. I have also been ensuring that I go for long walks when I have the energy (long walks are so good for my mental health!) and practicing gratitude: really considering the good things in my life and the things for which I'm grateful.

Tanai and I laugh a lot, there is so much to find funny in this world, and last weekend we had a long chat about the holidays we'd like to have after my treatment is finished, and our dreams for the future. It really feels good to have some things to look forward to and focus on during treatment. It reminds me of one of my favourite Walt Whitman poems:

No turning back! O youth, a weary road
Spreads out before you! Hidden grief lurks there,
And burning fires of vice lie smouldering there,
And disappointment's clutching fangs wait there;
But far ahead, up in the height of heaven,
Glitters a star. O, let thy constant gaze
Be fixed upon that star; step not away,
But gazing on the brightness of the guide,
Press forward to the end and falter not!

Cx

Anniversary

Last Sunday, 14 May, was a year since Tanai and I snuck off to the Wee Kirk o' the Heather in Las Vegas and tied the knot. We had a whirlwind romance, and that was such a wonderful, giddy, boundlessly happy time, it's hard to think it was only a year ago. Of course I didn't expect to spend our one year anniversary with such a huge chemo hangover, but that's how it panned out.

Getting ready for the wedding, larking in our hotel room

Just married! Having a burger and beer after getting hitched

I really wanted to treat Tanai for our anniversary, as we've been dealt such a crap hand of late, and he's been such a legend looking after me and being supportive and loving through these difficult times. I had anticipated feeling well-ish by Sunday, with it being 7 days after my chemo, so I booked for us to have a lovely afternoon tea in the Barbican Conservatory, a wonderful green-filled space only a short walk from our house. Tanai is a photosynthesist and so of course loves plants, in particular flowers, so I knew he'd love the setting. And it felt like something that would be do-able even if I felt tired.

Despite starting out well this cycle, by Thursday I felt like I'd been hit by a truck. I was completely shattered and feeling very unwell. It's perhaps a little TMI but one of the side effects of the anti-nausea meds is constipation, which I had with a vengeance by Thursday. So of course I panicked and took 6 different types of laxatives, which meant I had diarrhoea by Friday. Ah chemo, the gift that keeps on giving! Consequently, although I was hugely fatigued, I couldn't sleep properly at all, waking every 1-2 hours, preventing me from getting any real deep sleep. By Sunday I was completely exhausted and only made it out of bed with enough time to get ready and head out for the lunch. Simply stringing a sentence together uses up all of my energy on days like that!

The conservatory was delightful, sun-filled and an absolute hit with Tanai, especially some of the fabulous flowers in the cactus house. We sat down for our little sandwiches and cakes, all of which contained ingredients grown in the conservatory. A myriad of charming, intricate flavours accompanied by a glass of champagne; it was a lovely afternoon tea. With my new found taste-buds I would have preferred more savoury to sweet, but my usual self would not have had that quibble. Tanai then surprised me with a Barbican membership as my anniversary present! So I will no doubt enjoy plenty of cultural experiences here over the coming year, just a short walk from our flat. Can't wait.

My handsome hubby

Some loon with an incredible afternoon tea!

Cactus flowers

We then headed home and within 5 minutes I was back in bed for a nap. What a nanna! Not quite the anniversary I would have expected but we still had a charming afternoon and hopefully we can make up for it next year by doing something fun. And of course, we have each other and are still ridiculously in love, which is all you really need. My fabulous friend Nick who was popping in on his way from Australia to Cannes cooked us a yummy dinner that evening and entertained us with his charming company. I'm hoping he's forgiven me for leaving him off my list of bald style icons.

Dinner round our breakfast bar!

So today (Tuesday) I went back into work and I feel as though I'm back on the mend after round 2. I'm still very tired and no doubt will be in bed by 8.30pm tonight, but I can feel my energy levels rise and I'm sleeping better. Once again I'm so grateful to have work to keep me occupied -- I don't know what I'd do without it! I really enjoyed plugging back in to projects today and spending time with my colleagues. I think this week has brought home the realisation of just how long a slog the chemotherapy course really will be. But I'm a quarter of the way there now, and need to keep strong and positive until the end. Thanks again everyone for your kind words and messages, they are definitely keeping me going.

In the sunny Barbican Conservatory. 
My beautiful peacock-adorned headscarf is a vintage 1950s scarf from my friend Bree.

Chemo #2

Yesterday I was back at St Bart's for round 2 of chemo, after a lovely, relaxed weekend of fun, making the most of my last few days of relatively good energy levels. I did a few hours of work on Monday morning and then headed to the hospital for my 3pm appointment. One of the ladies I met at Saturday's meet-up lunch joked that the chemo ward at St Bart's is a little like a day spa, as it's on the 7th floor of the hospital with some pretty spectacular panoramic views of the city. Everyone gets their own plush chair, their own dedicated nurse, in smaller rooms of about 5-6 per room. Almost as if to confirm this fantasy, yesterday there was a lovely Italian masseuse who was offering complementary therapies, so I had a relaxing shiatsu foot massage while my drip sent the chemo drugs through my cannula. It really helped me relax and lowered my anxiety levels, what a fabulous idea. She started out as a volunteer one day a week outside of her own practice, but now she's employed by a charity to come to St Bart's every Monday to give out treatments. Unfortunately, from my next session I'm back on the Wednesday cycle, but it was a real treat.

I had the same treatments as last time, including the Doxorubicin, which the nurse, J___, administered by hand. This one is nicknamed 'The Red Devil', due to its extensive side-effects. It can also cause heart failure, which is why I had my heart checked out before starting. It's pretty nasty. It also turns my pee pink!

I chatted with a few other patients on the ward, including one cheery girl who was on her third batch of chemo! Her cancer spread from her breast to her lung, and it's just spread to her brain. But she was remarkably upbeat, chatting familiarly with all the nurses and sending me her facebook page. I love how resilient people are in the face of adversity. It's so inspiring.

The computer systems are still down at St Bart's and apparently the back-up has also been attacked, so everything is still being written out by hand, and triple checked with the consultants. However, the nurses are expected to get through the same number of patients in a day, leaving many of them somewhat frazzled. It's quite distressing seeing first hand the negative impact on the NHS which has been brought about by the Tory government. Although the care I am receiving is exceptional, the staff are all overworked, and yesterday the nurses were even joking about leaving the NHS and getting a job in Asda, as it pays better and is less stressful! It's maddening for me, someone who is currently having their life saved by the NHS, to know that in 10-20 years time it might not exist and I would have a very different prognosis.

So after three hours, I was all done, and this time my mum popped by the ward, having taken the train from Lancaster to stay with us for a few days. Tanai went back to work today and mum has been looking after me, making delicious food and keeping me company. Thus far, I have responded much better than the first time, in terms of side-effects. I slept fitfully last night but didn't suffer as much as last time with the nausea. On the day after chemo #1, I didn't leave my PJs, but today I got dressed and we went for a little walk round the Barbican. I even baked a batch of ginger biscuits to help combat the nausea! So I'm hoping I stay this way, and don't crash later instead. I'll keep you posted.

Mum doing some batch cooking!

Meet-up

Yesterday I had my first meet-up with women from a group I've joined on facebook. I've joined a couple of secret groups: one is only for women under the age of 45, as it's not as common for younger women to be diagnosed and the group creates a safe space in which to ask advice, discuss experiences and sometimes generally just rant, with other young women going through the same thing. It helps me feel less alone in experiencing this, and it has really helped with knowledge of what's to come, and understanding the lingo and medical jargon. The other group is a slightly more academic group, set up as a space in which to build resilience among women who have had a breast cancer diagnosis. This group has no age limit and has many members who are much further down the track in their cancer journey. It's also incredibly supportive, the women share their knowledge, strength and experience, and there is a Sunday evening discussion each week where we all get together online and share our thoughts on a particular pre-determined topic. Essentially we are being used as research subjects for an academic institution, who take our contributions and develop theories and resilience frameworks from them, but if I'm going to be a lab rat, this is a lab I'm quite happy to be in, thank you!

Fifteen of us had lunch in a restaurant on the South Bank yesterday, and it was fabulous to meet some of these amazing women who are helping me so much at the moment. I was the youngest person there, and some of the women were as much as 15 years along the road from active treatment, but it was such a wonderful afternoon spent in the company of some incredible people. We each had to get up and switch places after each course (yes, we treated ourselves to three courses, thank goodness my appetite has returned!), so I got to properly meet everyone there. It's quite an interesting concept: meeting a bunch of women with whom you potentially have nothing in common other than a cancer diagnosis, but I felt so grateful to have the opportunity to meet these women, whose paths I would never have crossed otherwise. There was much hilarity and laughter, lots of painful sharing, some gruesome tales, and plenty of great advice. None of these women asked for, or expected to be diagnosed with, breast cancer. But they all rolled their sleeves up and got on with it, and to spend time with people who have come out the other side, and are still getting on with life, was incredibly inspirational for me. Everyone's experience is different, both physically and psychologically, and there's no 'right' or 'wrong' way of going through this, but I took so many things away with me from the day which I'm sure will come back to me over the coming months and help get me through. They were all very impressed that I had made it out during chemo -- I was the only one there going through active treatment. I met a couple of ladies who had also been treated at St Bart's, which was lovely, and they gave me some good advice for things to do in the area between appointments. My favourite advice was a good list of charities who give out free stuff, from make-up to holidays: heck, I may as well get something out of this crappy situation!

While most of the women were sporting lovely new hairdos and talking about how they were getting on with their lives, a couple of them were going through their second or even third diagnosis. Living with secondary (metastatic) breast cancer, where the cancer has spread to other parts of the body, and cannot be cured, is a very different prognosis to primary breast cancer, which I have. The care available is also very different, which many of the women campaign about in an attempt to improve. But still, there lingered an incredible inner strength and resilience that was just as powerful to witness. I'm under no illusion, this may be me some day, and I hope if it is, that I respond with grace and determination, as these women have. And I look forward to a day in the future when I can go along to one of these lunches and be an inspiration to a woman much younger than I, who is going through the first few weeks of her journey.

Happy bones

Today I had my pre-chemo catch up with my oncologist, Dr S___, as my next session is on Monday. She wanted to know how I found things the first time around, so I referred to my symptom diary and asked her some of the questions I'd been saving up. She is really happy with how things are going and I'm ready for round two! I shall enjoy my last weekend of relatively high energy levels before being whacked back down to the ground on Monday. She also had the results of my bone scan, and happily they have come back clear, so the cancer has not spread to my bones. Unfortunately, however, she did not have the results of my CT scan, so I have to wait a little longer for those. St Bart's has had a complete and utter computer system failure! Their computers have been down for 10 days and everything is being handwritten at the moment, causing quite a backlog. It's astonishing how such a large and important hospital can be offline for such a long time. They could learn a thing or two about disaster recovery from our Head of Data and Business Technology at work. She said that patients have been having their chemo cancelled and wards are running very behind with everything. I hope it doesn't affect my session on Monday. Hopefully I will get my CT results next time I see her. In the meantime I'm happy with my cancer-free bones.

After visiting my oncologist, I also had to have more blood taken, which will be tested and sent to the chemo ward in advance of Monday. This will happen for each round of my treatment, as they have to check all the different levels in my blood to make sure they have recovered enough from the last round for me to be able to take some more. As long as I can get up off the ground before the referee counts down from 10-1, I can get back in the ring. Given that my current chemo end-date is mid-September, which feels like an age away, I'm hoping nothing delays any stage of my treatment. At least I'm slowly getting used to needles, and finding good breathing methods to ensure I don't faint again.

Other than that, the side effects have faded somewhat since my first session. My hair, which we had shaved to about 3mm, has continued to fall out, although it's much less distressing when it's just tiny little stubble. Each morning in the shower I rub my head with a facecloth and loads of little hairs come off onto the cloth. I'd say about 85% of it has gone now, and there are just some stubborn ones that are clinging on. Hilariously, the cowlick at the front is still there, a spiky patch of stubble, just as unruly as it was when it hid beneath my fringe. It sticks out of the scarves I'm wearing on my head, prickly to the touch, and I wouldn't be surprised if it clung on to the bitter end. The nausea has completely gone, and my tastebuds and food cravings are almost back to normal, but I'm still quite fatigued, and I'm not sleeping very well. Dr S___ isn't going to give me anything to help me sleep just yet, she's encouraging me to try to drink as much as I can in the mornings and ease off towards the evenings, in the hope that I won't need to get up in the night to pee. We shall see. I'm still incredibly dehydrated all the time, drinking pints and pints of water all day. I've also got lots of little tubes of hand cream (many of them gifts from you lovely people, thank you!) that are strategically placed all over the house, in every bag I own, in my desk drawer at work... I'm never more than 2 paces away from some handcream! I'm also moisturising my almost-bald head. My scalp is going to be treated so well while it's exposed, by the time my hair starts growing back it will be in such wonderful condition.

My mum is coming down to London on Monday, to look after me in my first few days after the next chemo, and give Tanai a bit of a break. This is great timing, as he has disappeared into a bit of a mental vortex: he made a huge scientific discovery a few days ago and is so excited about it, he's frantically trying to write up his findings and get them published. (He did try to explain it to me, but it went completely over my head.) He's extremely distracted at the moment which is fine when I am doing well, but it will be good to have mum around next week to make sure I'm okay!

Not much more to report. I'll check in again after treatment and let you know how I get on.