Pathology results and a plan

Bit of an update this one, brace yourselves. Last week I saw someone from my surgeon's team at the Royal London Hospital for my post-op pathology results (my surgeon was on holiday so I saw someone new). I received great news, they didn't find anything dodgy in any of the organs, glands and other stuff they removed during my major surgery on 2 April. So the tubo-ovarian cancer that they found was limited to just a 1.7mm sized tumour in only one of my fallopian tubes, which they had already removed at the end of February. This is good news on a number of levels. It means they got it all, so there's none left to remove or nuke, but the surgery was not in vain either. As I carry the BRCA1 mutation, this increases the likelihood of it coming back. But now they've removed pretty much everything it could possibly come back in, so I'm giving myself the best possible chance of remaining cancer-free after all of this and getting on with my life. The surgeon said that in their MDM (Multi-Disciplinary Meeting) they had argued about whether or not I even needed to have chemotherapy! Medicine is not an exact science, they just have to go on studies of people with similar cancer situations to mine; their own experience; and a bit of instinct. And as they were completely divided as a group, patient opinion also forms a part of it. Tanai and I have been reading studies about ovarian cancer, and in instances where the cancer was contained as mine was, patients who have the complete surgery I had, followed by a course of chemotherapy, have the best outcomes. For me it's a no-brainer -- if I didn't have chemo and it came back in the future, I would never forgive myself for not giving myself the best possible chance. So we opted 'yes' for chemo.

So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.

Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.

So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!

I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.

I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.

Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.

Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!

Final pre-op prep

I'm heading in for my surgery tomorrow so just thought I'd update you on the final things that have happened this week. Since my pre-op check-up I have seen the cardio oncologist again, for the results of my various heart tests. She was very reassuring and said all the test results seem fine. She suspects I have what is called Ventricular Ectopy, where my heart decides to give an extra beat every now and again, for a short burst, which explains my chest pain and the fact that I'm feeling my heart beating quite aggressively. She said it's nothing to worry about in the short term, that I'm fine to proceed with surgery, but that if it's still happening in a couple of months I should head back in to see her. She did, however, point out that my blood results show I'm anaemic, so she has advised that I receive a blood transfusion after my surgery rather than simply being left to build my bloods back up on my own.

I also received a call this week from the clinic to say my bloods needed doing again, so it appears that they are not as good as they could be. The nurse told me my magnesium and potassium are low, or something like that (I didn't take notes) and she took three more vials from me to do further tests. Due to 6 months of sustained chemotherapy, my veins are not as good as they used to be, and have a tendency to collapse when someone tries to put a needle in them. She tried her hardest but had to use a vein that was quite deep, and now I have a huge bruise on my left arm! I asked the google what I could do about collapsed veins, thinking there might be some things I could do to help them regain their strength (such as drinking lots of water doing exercises etc) but all I unearthed were helpful websites urging me to stop doing drugs! It seems as though that's the main cause of collapsed veins, and the advice is all very admonishing, so I retreated. Anyway, hopefully they got what they needed at the hospital and my bloods are getting better.

Finally, this morning I had to go into the nuclear medicine department again so that they could inject me with some radioactivity. The nurse was fabulous and explained how it all works, before injecting it into my boob near the nipple. It only stung a little and now I'm back home. After the injection, she took a marker pen, circled the area she had injected and put a little arrow towards it with 'INJ' next to it! I suspect that is not the last time I will be written on with marker pen. Oh well, if it helps the surgeons I really don't mind. So tomorrow they will apparently use a Geiger counter to see where the radioactivity has gathered, and this will help them see where my primary lymph nodes are, to aid them in taking them out. It's all so fascinating.

At the nuclear medicine dept this morning. Far too early for Tanai!

On the way home, we stopped at St John's bakery and bought two donuts. They make delicious fresh donuts every day and fill them with different creams and custards. Tanai got one with honey and brandy cream, and I got one with a delicious spiced custard. This has become a bit of a tradition now, buying St John's donuts at each stage of my treatment. It's so lovely to have it to look forward to.

Today's yummy donuts

This weekend I also went to my first gig at the Roundhouse since the day before I received my prognosis back in March (we went to see Sampha and the very next day got all the test results). There was an all-day festival featuring some really funky music, including the Hot 8 Brass Band, who were great. I managed a whole glass of wine and we stayed out until 9pm! Crazy. After 6 months of being very boring and primarily staying home, it felt like a real treat.

I finally have a social life again

We also spent Sunday ferociously batch cooking, so that we have a freezer full of food in readiness. Although Tanai does love cooking, it's likely I will have mobility issues for a while in my right arm, so might not be able to cook for a while. Rather than have him cook every single night, I thought it would be nice to stock up on some yummy meals in our freezer. The flat still smells delicious!

Chef Cardona

We also did some DIY and installed a new ceiling light in the kitchen to brighten up a dark corner. We received a lesson from my dad over video whatsapp and then turned off the electric at the mains and wired in the light. A bit nervewracking but it worked!

Lovely new ceiling lamp

I have finally ditched the headscarves as I now have enough hair to look plausibly like another short-haired person, and I feel great. It's a little windy round my ears though, I wasn't prepared for the cold! But I'm enjoying how low-maintenance it is. Someone at work said 'big earrings and lippy' so I've taken that on board.

Rocking the short hair

I'll update you all after the op! Fingers crossed it all goes well.

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!

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.

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.

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!