Cancerversary and the long road to recovery

Thursday 27 February was exactly one year since I received my diagnosis, otherwise known as my 'Cancerversary'. I wasn't planning on marking it in any way, as it's only a few days after my birthday and I had enjoyed a lovely weekend of birthday celebrations, but Tanai and I braved the cold and had dinner in a Peruvian restaurant, toasting ourselves with pisco sours for getting through this last tough year.

So now that I've seen off the cancer, my life has become primarily about making sure it doesn't return. The Tamoxifen and Zoladex (which I explained more here) have properly kicked in, and I'm currently experiencing the full force of menopausal symptoms. I have a couple of hot flushes every hour during the day, and several times at night, which is waking me up 3-4 times every night. I'm struggling a little with how this is affecting my sleep, so I'm trying to do as much as I can to reduce the impact they have on me. (I've also decided that 'hot flushes' is a ridiculous name for them. More like 'power surges' -- honestly they are so full on!) I'm doing a 4-week self-guided CBT course to try to reduce their impact and frequency, and I've even bought a 'lady magnet', a small magnet that you wear attached to your undies which, in some women, reduces the severity of hot flushes (I told you I'd try anything!). At the Bart's menopause clinic they have prescribed me with some anti-hypertension drugs which reduce hot flushes as a side effect. But I'm just going to wait a few weeks before taking them, preferring first to see if I can do something more natural. They are absolutely horrid though, and I can see how they are quite debilitating, especially in a work situation. It's so difficult to describe them but it's almost as if your bodily temperature gauge is broken, and your temperature oscillates between freezing and boiling all through the day and night. Because my sleep is being so interrupted, I'm having to try to ensure I have many hours in bed each night, in order that I can get as much sleep as possible just to feel rested.

I also received a phone call from my GP practice, saying that they knew I'd come to the end of my active treatment, and that they were now responsible for my care, so did I want to come in and have a chat? Quite astonishing, how pro-active they are! So I went to see my GP (who is lovely) and she helped me out with a few things. She's referred me for a DEXA scan (a bone density scan) so I can see how my bones are faring, and she's referred me for some counselling, to help me make sure my mental health is holding up after a challenging year. I feel as though I've done really well so far,  but I'm finding it hard to deal with the affects of the drugs on my body, the sleepless nights, and the lingering fatigue. Everyone thinks I'm 'done with cancer' and well again, but I'm still going through a lot, and trying really hard to maintain my strength and positivity. It's starting to take its toll, so I figured a few sessions with a professional wouldn't go amiss. I'm also probably putting a little too much pressure on myself to quickly get back to some kind of 'normality', when I should instead be gentle with myself and allow a long and effective convalescence. It's just so hard when I feel I've pressed the 'pause' button on life for so long already, and I'm itching to get back into the swing of things.

The GP also recommended some retail therapy. No, really! I was talking about how I was trying to lose my treatment weight but it was taking its sweet time (2.5kg down, 7.5kg to go!) and she said 'why don't you go out and buy some new clothes, so you feel good about yourself'. I took her literally and bought a cute little pinafore dress.

We have just come back from our first holiday post-treatment, a week in Nice in the South of France. It was a perfect way to relax after this last year, and we really enjoyed the early Spring sunshine on our skin as we explored the Riviera. We bought a book called 'Walk and Eat near Nice' and we did a few of the walks in it, taking a bus to quaint nearby villages and walking through the mountains back towards Nice, admiring the spectacular views of the coast and exploring ancient forts and medieval towns. We also ate some fabulous food and I caught up on sleep. Heavenly!

 

I also thought I'd give you an update on my chemo blanket project. Some of you may remember that I decided to teach myself how to crochet at the beginning of my chemotherapy. This was because I wanted to do something to pass the time while recovering from each round of chemo, that wasn't too taxing on the brain. I bought a copy of 'The Happy Hooker' and taught myself some different techniques. I started with some simple granny squares and graduated to some more complicated ones, with multiple colours. Then I eventually stitched them all together. It's only a small blanket which I've draped over the back of the sofa, but I'm really proud of it, and can see my progression in it. I'm now moving onto another project for a friend, so watch this space!

Final chemo

A week ago I had my final session of chemotherapy. Hurrah! Almost 6 months after my first session I am finally done with what is largely accepted to be the worst part of this experience. Although I still have lots of treatment to come, this feels like a hugely significant milestone, and I am understandably very happy to see the back of it!

Hooked up for the final time!

Of course I'm not really fully finished with chemo until it's out of my system and I'm through the side effects, but I'm feeling a little better each day already, and psychologically it feels brilliant to know that I won't be knocked down again in a couple of weeks, just as I'm starting to feel well again. I'm starting to look forward to having some more energy, to getting fit again after 6 months of relative inactivity, and to venture out into the social world once more.

The side effects haven't been too bad this time, perhaps it's a case of positive mind over matter, and I've been working from home over the last week. Each day I've tried to venture out at least once, for a little walk, to keep as active as possible, and I'm trying to sleep as well as I can. I've been eating nutritious, healthy food and taking Epsom salt baths most days to ease the bone pain.

My favourite bakery, Konditor and Cook, ran a competition this week on their instagram account, where they asked 'who do you think deserves a cake and why?'. I commented that my amazing husband Tanai deserved a cake for looking after me during chemo, and that it would be a great way to celebrate having the final round this week. Well, to my surprise, they agreed! So this weekend we picked up a delicious hazelnut and chocolate cake from their Waterloo bakery.

A lovely way to celebrate the end of 6 challenging months.

I'm preparing a long, candid and hopefully funny post about my chemo experiences, which I'll publish later this week. Next up for me is an appointment this Friday with my surgeon, when hopefully I'll get a date for my surgery and a plan for what will happen. They are going to remove what's left of the tumour and also take out a 'sentinel' lymph node from my armpit to check that the cancer hasn't made it into my lymph nodes (this is how the cancer spreads to other parts of the body). Hopefully it shouldn't be too invasive an operation, and I will recover in a couple of weeks. After that I will have a course of radiotherapy, and then some more tests to check that all the cancer has gone. I'm also going back to the chemo ward every three weeks to have a Herceptin injection in my leg, for the next year. In the meantime I'm taking tentative steps into the world of 'having a life' again, by starting a painting class this evening. I used to love painting when I was at school, but haven't really done any since then, so I'm going to see where my inspiration leads me and learn a new skill. Looking forward to it!

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.

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.

Finally, somewhat of a plan

This morning was results day, so Tanai and I arrived at St Bart's somewhat bleary-eyed after a late night (at a great Sampha gig) and broken sleep. I felt very calm and eager to find out what's what. So, here we go.

There's a lot of good news and I'm generally feeling very positive. I have a tough few months ahead but my inner project manager is kicking in, and soon I'll have a proper plan (complete with spreadsheets and gant charts, ha ha).

Thankfully, my left breast is fine, and the small lump in my right breast is benign, so the only cancer is the large lump in my right breast. It's a ductal carcinoma grade 3 (which means that it's a cancer in my milk ducts, looks different to normal breast cells and is fast-growing, or 'aggressive'). It's oestrogen receptive 7 and they're still waiting for the HER2 receptor results. This is relevant to deciding which drugs will be most effective to nuke the cancer.

I was expecting to have surgery first and then additional treatment, but my surgeon is advising me to have a course of chemotherapy first and then surgery. This is primarily because this cancer is likely to be receptive to chemo and hormone treatment, so it could be significantly reduced in size and may even be nuked completely by the drugs (although unlikely) so this is the best way round. They are making me an appointment with an oncologist for next week where I will discuss my chemo schedule, but it's likely that this will begin in a couple of weeks. They are also going to give me Pertuzumab which is a new drug only recently licenced, which is pretty cool. (I'm not used to being an 'early adopter' but why not start now!)

The general schedule for chemo is once every 3 weeks, for 6 rounds, which will pretty much take me through the summer (fun times!) and then some more tests and likely surgery in the autumn (September-ish). Hopefully the chemo will have shrunk the tumour to a teeny size so the surgery won't be too bad. When they remove the lump they will do more tests on it, and check my lymph nodes at the same time. Depending on the results of those tests (which will determine if it has spread) I may have to have a) more surgery, b) radiotherapy or c) nothing at all.

So, first things first. On the way home from the hospital Tanai and I stopped by St John's Bakery and got a couple of lemon cream-filled donuts to have with coffee as we digested the news. When life gives you lemons, eat delicious lemon cream-filled donuts!

My initial thoughts are very positive. It feels containable and treatable. It's also highly likely that I can continue to go to work while having chemo treatment, and with a combination of strategic allocation of my one day off a week, and timing of treatment, I could end up having minimum time off. It's likely that I would need to take a chunk of time off after surgery (eg 6 weeks) in the autumn but the doctors don't know for sure yet. And of course I don't know how my body will respond to the chemo so a degree of flexibility will have to be involved.

My surgeon, Miss L___, followed up her news about my results today with, "So of course, we will have to talk about fertility treatment..." I'd barely let her get the words out before I said "No we're not, we don't want kids!". She was a little taken aback. I suppose most childless women my age who are diagnosed have an initial response of "Will I still be able to have kids?", and they have various strategies to increase the possibility of future conception, such as egg harvesting. It's probably rare that someone is as blunt as I am, and blurts out that my only worry is that the hormone treatment interferes with my birth control and I accidentally end up pregnant! Poor Miss L___, my style is far too direct for her. I wonder if she will mellow a little over time.

Anyway, the news is still fresh, so I'm going to digest it today and have a low-key weekend working out what the practical next steps are. Buying wigs, etc. My style is to keep going, be honest about things but be positive and encourage people around me to be positive too, but I also need to develop a good way of assessing whether or not some days I'm better off staying at home and just letting myself have a Shit Day.

I'm not underestimating how huge this is, I know that chemo is a bastard and I've got a tough few months ahead, but I'd like to try to keep going as much as possible and I know that I have an amazingly supportive network of friends, family and colleagues around me. And of course Tanai is being awesome as ever. Now that we've eaten our yummy donuts he's gone off to work and I am going to enjoy the rest of my day off doing some Life Admin and trying to catch up on emails. I've had some lovely messages from people far and wide with really supportive and encouraging words. I will try to respond to everyone, but know that your positive thoughts are reaching me and giving me strength.

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