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.

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.

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?

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.