Cancer in the time of Coronavirus

It's been a few months, so I thought I'd post a little update. I have been re-reading over some of my past blog posts recently as I'm writing my Masters dissertation on 'Cancer and the Construction of the Self', and it's been fascinating to me seeing how I articulated my feelings during treatment. I'm so glad I kept this record, and I know that it has really helped others who are going through something similar.

I finished active treatment (again) towards the end of last year, with my final preventative breast surgery. I still have a number of appointments in the diary, a regular check-up with my ovarian oncology team; blood tests for ovarian cancer markers (both 3-monthly); visits to the menopause clinic and the Lymphedema clinic (both 6-monthly); Zometa infusions on the chemo ward (also every 6 months for a total of 3 years); and I have to regularly pick up prescriptions from the pharmacy for Tamoxifen and various other things I have on repeat prescription. 

In early March, as we could see what was happening in China and Italy, Tanai and I decided to self-isolate at home, to protect us both from the coronavirus. My immune system is still compromised post-treatment and I didn't want to take any risks. Tanai started working from home, and all my work could be done from home, so it was relatively easy to do. A week later, the government mandated a country-wide lockdown, and I was sent a letter and a text from the government requiring me to 'shield' for 12 weeks. This meant not leaving the house, and making sure no-one in my household exposed themselves to the virus, as I would be a burden on the NHS if I caught it. As we were already doing this anyway, nothing much changed. At first we struggled to get provisions, and were using up our storecupboard food (and toilet roll!). I couldn't get an online shop as all slots were taken, and our veg box became extremely unreliable with most things missing each week as they struggled with the surge of orders. For a few weeks we received a government box with essential provisions, and it was literally a lifeline to us until I managed to get on the Sainsbury's 'vulnerable list' so could get a grocery delivery once a week. We dutifully didn't leave the house, which has been quite tough, as we live in a small one-bedroomed flat with no outside area, and May was the sunniest month on record! Eventually we decided to leave the house for one hour a day, either early in the morning or late at night, for a walk or run. Luckily we live in an area which is full of offices, and very few residents, so we have felt quite safe as the streets are relatively empty. I'm hugely grateful for the fact that we have been able to properly shield, that Tanai has been able to work from home the whole time (actually the university closed so he had to work from home!) and I was able to switch the freelance work I had to remote work. 

Out for a dusk walk

NHS text

Most of my medical appointments have either been cancelled, or moved to phone appointments. I have missed one of my ovarian cancer blood tests, which will leave 6 months between tests instead of 3, but as I'm low risk they are not too worried. My local Boots closed, so we had to walk further for my prescriptions, but the Boots branches have implemented plastic shields for their staff and a limit to the number of people in the store at once, so again, I feel very safe. 

Since January, I have been working as a volunteer phone counsellor for Breast Cancer Now, supporting other women with a diagnosis on their 'Someone Like Me' phone line. I get paired up with women who have a similar situation to mine in some way, and we chat on the phone for an hour or so, with the regularity determined by their needs (some weekly, some monthly, some for just a one-off chat). I have found it very rewarding, as I love to help other people through their own cancer journey, and use my experiences for good. It's also making good use of my coaching training, as we are not there to give medical advice, just to share our experiences and help others see through the fog of their treatment and build their own resilience, finding their own resources to cope. Since Covid-19 hit, demand for the service has increased, perhaps because the NHS is so swamped, and I have had quite a few 'clients'. And of course, lots of the advice I give is no longer always valid! Their experience of going through treatment in these strange times is very different from mine. They are not allowed to take anyone with them to any of their appointments. They can't organise 'treats' for themselves on a good week such as going to a restaurant. And it must be incredibly stressful putting yourself in an immunocompromised position when there's a respiratory disease doing the rounds. There are quite a lot of changes happening. Elective surgery was paused for quite a while, and the women I'm talking to are not allowed to have immediate reconstruction during their surgery if they have a mastectomy. Understandably, many of them are very anxious, and it's nice to be able to help them in the small way I can.

I suspect I will also have to make compromises: my next Zometa is scheduled for August, and I'm reluctant to go into hospital for my infusion during this pandemic. The Zometa gives me another 2% reduction of the potential of recurrence, as well as protecting my bones from the affects of my treatment, so I have to weight that up against the risks. I am getting very worried about my bones, however, so I have decided to go into the hospital for this infusion. My bones are at risk due to the chemo drugs I have had, and the medical menopause I'm now experiencing, as well as the Tamoxifen that I am on for 3 years. Already I am experiencing a lot of bone pain, often so bad it wakes me up at night, and I really want to be able to still do the things that I love, like hiking and yoga, so I need to give my bones all the protection I can.

I am also experiencing incredible pain in my hands and arms at the moment. I am writing my dissertation for uni so I'm at the keyboard a lot, and the nerves in my hands have been damaged by the chemo. I get shooting pains in the back of my hand almost constantly, and the pain is waking me up at night.

Another long term side effect is lymphodema, which I have sporadically in my right arm, hand, leg and foot, and permanently in my abdomen and torso. This is because I've had so many of my lymph nodes removed, so my lymph fluid gets stuck and builds up. It gets worse when the weather is warm, which is a lot at the moment. My abdomen is so swollen that most of my clothes don't fit me any more! They are too loose where my boobs used to be, and too tight around my hips! So I've been selling a load of my clothes on eBay. I've actually been really enjoying it. Some of them only sell for 99p but it feels great to be getting rid of them and sending them to a new home. I have worn some lovely frocks in my time, and now it's someone else's turn. I'm also really loving my new flat figure, and experimenting with different looks. I've embraced being bra-less every day, and I've got some good ideas of the kinds of clothes I'd like to try. But as we are still mainly at home I'm rotating between the same small number of outfits for the moment!

I realise there are some niggles and moans here, but it's important that I am honest. I know I'm incredibly lucky that I've managed to get rid of cancer twice, and I have given myself the best possible chance of a long and happy life, but I do have permanent disabilities which have resulted from my treatment which are affecting me on a daily basis. I'm finding work-arounds and ways of dealing with them but that doesn't make it any less difficult on most days. 

Some of the swelling on my torso is making me a bit worried, as I have some strange swelling on the left hand side above my belly button. It could just be scar tissue, but my oncologist has referred me for an ultrasound, which I should have in the next couple of weeks, so fingers crossed that is nothing to worry about. I can't quite work out if it's always been there but my boobs were in the way when I looked down so I couldn't see it! Ha ha.

Anyway, my next blog post is going to be a guest post! Very exciting. So watch this space...

Here are some more govt and NHS messages and flyers that I have received.

Stitching your parachute

My wonderful friend Dom accompanied me to my fourth round of chemo last month and while we were having a 5-hour natter about various things (we're both very good at talking!) he reminded me of the concept of 'stitching your parachute before you need it'. He couldn't remember if it was my advice in the first place or our mutual friend Caitlin's, but either way, it rang a bell for me and it's something I've been very aware of as I've researched the concept of resilience in light of my diagnosis. I suppose in very simple terms it refers to taking time to do the work of building your own personal and emotional resilience before you hit a crisis point. If you stitch up any holes in your parachute when you're happy and resting on the ground, it's ready for whenever you need it. If you leave it until you're in the tumbling aeroplane, it's too late, and it won't be adequate to save you.

As part of my own work looking after my mental health over the last few months, I've been pleased to discover that I'm already quite good at regularly stitching my parachute, and although I may not have had the vocabulary to describe it, self-care has always been something I've practiced. Whether it's something as simple as taking a Sunday evening bath, dropping some essential oils into the water and popping the Wittertainment podcast playing on my phone while I soak, or something as concerted as signing up to the Headspace app and resolving to practice 20 minutes of mindfulness each day, I've always taken time out for myself. I find walking incredibly restorative for my mental health, and would often walk the hour to and from work, pacing briskly and listening to a podcast or audio book, enjoying the changing seasons over the weeks. Cooking is another way I wind down and I usually cook my meals from scratch, enjoying the time it takes to prepare food, the creativity involved and the delicious rewards at the end. I often take myself round museums and galleries on my own, and enjoy 'me time' amongst the art or stories from other times and peoples. All these things are little ways over the years I've practiced self-care, taken some time for myself and shored up my mental health reserves.

Being resilient is not about being hard and impervious to the knocks and stresses life places upon you. It's about being flexible and able to cope in the face of adversity, to draw on internal strengths and those of the networks you've built around you. It means that when you suffer stress or trauma, you have the ability to adapt, to bend and stretch in the face of it, and to somewhat 'bounce back'. Importantly, however, it's not about being hard or unfeeling, or trying not to be affected by life's events; it's more about allowing the stress or trauma to take you in an unexpected new direction and allowing yourself to go with it, and not try to force your life, or yourself, to be a certain way.

With wonderful serendipity, just after my diagnosis my employer teamed up with the mental health charity, Mind, and decided to roll out some Emotional Resilience training for all staff in the organisation. We had an interesting presentation and were given time to think about what was in our 'resilience toolbox'. We discussed the pillars of resilience, and how we can cultivate emotional resilience in our lives and more effectively manage stress. There were some really useful tips in the presentation and it definitely made me think about this whole thing in a different way. Interestingly, it advocated writing as a way to step back from negative thoughts and get some distance. The presentation summarised the five ways to wellbeing thus:

Give: your time, your words, your presence
Keep learning: embrace new experiences, see opportunities, surprise yourself
Be active: do what you can, enjoy what you do, move your mood
Connect: talk and listen, be there, feel connected
Take notice: remember the simple things that give you joy

I think these are all small things that can contribute to positive mental health, and a stock of resilience for when life gets touch. They are great ways of stitching up one's parachute in preparation.

Another thing I've started to read about is post-traumatic growth, and positive psychology. These are theories about things you can put in place to ensure you grow from adversity, rather than being beaten down by it and suffering post-traumatic stress disorder. The theories acknowledge that post-traumatic stress is inevitable, following something as traumatic as a cancer diagnosis, but that there are measures we can put in place to deal with this stress, to go with it, and to emerge at the end with increased strength, wellbeing, and a practical pathway to positive change. It all sounds rather pop-psych but I do think there's some truth in it all, and I'm interested in reading more. One book I read summarised five dimensions of post-traumatic growth:

Recognise and use personal strengths
Nurture closer relationships
Enjoy a greater appreciation of life
Search out and embrace new possibilities
Deepen spiritual development

Again, all great advice, which according to Aristotle, can lead to a form of happiness called Eudaimonic wellbeing, which is particularly flourishing and fulfilled. Well, we'll see about that, at this stage I'm just grateful to be engaging in these thoughts, to continue to function at work and at home, and to cultivate hope and optimism while I'm going through this. With chemo side-effects robbing me of many of my usual forms of self-care (no energy to walk, changed tastebuds affecting my enjoyment of food, lack of sleep etc) it's taking most of my strength just to get through each day. I'll save the real rebuilding work until I'm done with active treatment.

A running theme through a lot of the things I've been reading around this topic is the importance of building strong networks around you. I've always had a huge capacity for friendship and have cultivated relationships with people all over the world throughout the years. This is undoubtedly a huge source of strength for me at the moment, as I receive messages, gifts, thoughtful cards and offers of assistance from many of you, my global team of cheerleaders as I navigate this particularly tricky time. Even when I have a wobble, you've got my back, so thanks everyone. You're the best tool in my resilience toolkit. (Naw!)

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?

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!

On becoming aware of my own mortality

Ralph Waldo Emerson once said, 'When I read a good book I wish that my life were three thousand years long'. As many of you know, I'm an avid reader (I'm on Goodreads here) so one of my random thoughts over the last couple of weeks has been: 'Gosh, I need to become more selective about what I choose to read, as time may be short, and there are so many books still unread'. I think that was my slightly circuitous way of expressing a new awareness of my own mortality.

Until now, my mortality has been a fairly abstract thought. Of course, it's not a new idea: we all know that we will die someday, but it's not until this moment that I believe I've truly understood the concept. Perhaps this sounds a little cliched, but once you stare death in the face, the world appears completely different. Even if I had ever tried to intellectualise it before, I could not grasp its true meaning.

And it manifests itself in different ways. This weekend, we are heading to Heidelberg for a short break, to visit some of my family who live there. Over breakfast I was explaining to Tanai that my uncle Paul retired last year, and I'm looking forward to finding out more about how he is enjoying his retirement. Last time I visited Heidelberg he was just about to finish his job and was planning to pursue all sorts of interests with his new-found free time. Tanai ruminated on the subject of retirement, and concluded that he, too, is looking forward to retiring, and the freedom it will bring. Suddenly I paused, and thought: 'I hope I'm still around when you retire so that we can enjoy it together'. This feels quite shocking for me: I've never been maudlin, or thought extensively about my own death, and to experience these reactions is new to me. When I shared my thoughts with Tanai he confessed he'd also felt similar things recently. Often, we will talk over breakfast or dinner about our plans or dreams for the future. And yet, recently, we have both (consciously or subconsciously) avoided discussing too many dreams far into the future. We cannot say for certainty what our dreams or plans are for when we are old, as we no longer know we will be old together. 

This is not to say I've suddenly become morose or convinced I will die soon. I remain pragmatic and optimistic and keen to overcome this new setback, but it's still an interesting revelation. I suppose I'm now aware of a potentially changed timetable; a sense of urgency where before I felt I had plenty of time left to do the things I want to do, and for Tanai and I to have all the adventures we wish to have together. I suspect it will lead to a reassessment of my priorities. I understand now why many people who have beaten cancer have a renewed sense of vigour, and often completely change their direction in life. Therefore, it has brought about a time of contemplation in me. I have been reflecting on where I am in my life, and how I feel about my life choices.

Happily, I think there is very little I would change. I'm feeling fulfilled in my job, my studies, my relationship and (for the little time left over for it) my social life. I have a huge capacity for friendship and cherish my friendships with people all over the world. Of course I'd love to have more time and money to see more of my friends more often, but I do as well as I can. I'm glad I took a gap year a couple of years ago and fed my soul with some solo travel. And I'm finding my masters degree incredibly rewarding. I don't have regrets and can't point to something significant that I wish to change. I suspect the impact of this growing awareness will be more subtle, and perhaps more fundamental.

Essentially, life feels to me more precious, more fragile than it did before. Moments are imbued with more value, and I do not wish to waste any of them. Therefore, I don’t want to spend my waking moments scrolling through a litany of Trump’s latest imbecilic actions, or frittering away evenings on things I’m only half-hearted about: instead I wish to use the days of my life wisely. Yes, I wish to read good books; to be absorbed in great art and culture; to travel to new places; to spend time researching things that interest me, seeking new knowledge, wrapping my brain around concepts and discovering great writers and thinkers. I wish to spend delightful weekends experimenting in the kitchen with my favourite sous-chef. To enjoy long, languorous evenings drinking wine and talking shit with my wonderful friends. 

Life is a series of choices, and suddenly I’ve become a lot more selective about what I shall choose.