Whipping the rug from under cancer's feet

This post is a bit different to my previous posts, as I have a guest! I want to share my sister Pippa's story with you, as I think this will be helpful to anyone going through something similar to her, and she is also really keen to share her experiences. For those of you who don't know her, my sister Pippa is 11 years younger than I, and she lives in Leeds with her partner and 5-year-old son. I interviewed her for this post, and for a forthcoming podcast series I'm creating, and this is her story.

Recording our conversation

Pippa remembers vividly the day in February 2017 when she received the call from me telling her I had been diagnosed with breast cancer. Although Pip and I are very different in many ways, there are some ways in which we are very similar. We have both inherited our granny's stoic pragmatism. Pip had a very practical response to my diagnosis, and felt optimistic once she knew my prognosis. We kept in touch all through treatment, and she sent me this awesome card when I got my scan mid-way through chemo which showed that the lump had halved in size:

Interestingly, Pippa didn't realise at first that I was quite young to receive a cancer diagnosis, but over time, her understanding of the situation deepened, partly through the information that I was sharing. She was grateful that we could be real with each other and she could ask me lots of questions. She remembers realising that cancer really could happen to anyone, as I had lived such a healthy lifestyle until that point so my diagnosis was quite a surprise. She was optimistic, and could see the light at the end of the tunnel; she shared my own positive attitude towards my cancer journey. When I received my BRCA1 diagnosis in 2018, however, she was more affected emotionally, because she had thought that I was done with cancer, finished with it all, whereas here was evidence that it hadn't necessarily gone away, but had the potential to return and affect her family once more. She found it less easy to compartmentalise my BRCA diagnosis, and it brought the strange semantic challenge of how to talk about my cancer. She wanted to say "My sister has had cancer" rather than "My sister has cancer", but the BRCA situation complicated things. And of course she eventually realised it had implications for her, despite the fact that I initially downplayed the risks and talked about getting screened rather than having preventative surgery.

Towards the end of 2018, Pip saw a genetic counsellor at a hospital in Leeds, and began the process of getting tested for the BRCA mutation herself. She knew she had a 50/50 chance of testing positive. (Incidentally, my dad and my two paternal cousins were also tested. Dad tested positive of course, and, thankfully, my cousins tested negative. Our youngest sister Caitlin also later tested negative.) The testing was quicker for them than it was for me, because their tests only needed to look for the specific mutation that I had been diagnosed with, whereas my test had sequenced the whole BRCA gene. As with my results, Pip got hers in the post, and she knew that she had tested positive when a leaflet about dealing with cancer fell out of the envelope! At first she pushed the issue to one side; our granny was ill and we as a family had other things to concern ourselves with, but as the weeks went by she thought and talked about it. 

She was in a relatively new relationship, and one of the knock-on effects of receiving the diagnosis was that she had to have quite premature conversations with her new partner about their appetite for having children together, and the specific timescale of this. In fact, they had these conversations in a hypothetical context before she'd even received her results. It's a testament to Martin's all-round awesomeness that only a couple of months after meeting Pippa, he stepped up, engaged with these questions, and supported her through the whole process. In a similar way to the gratitude Pip has towards my partner, Tanai, for supporting me through my treatment, I am so grateful to Marty for being such a strong, positive presence in my sister's life.

The BRCA1 diagnosis brought Pippa a sense of urgency about completing her family, in order that she could then have preventative surgeries. As you can imagine, these issues all weighed heavily on her mind in the weeks and months after receiving the letter. To make matters even worse, and as regular readers will know, when I had my 'preventative' oophorectomy in February 2019, the lab results unexpectedly showed that I had already developed early-stage ovarian cancer, so I then had to have much more invasive surgery and more chemo. Suddenly the spectre of cancer started to loom over Pippa. It didn't help that the symptoms of ovarian cancer (needing to pee often, feeling bloated etc) are basically the same symptoms as those of simply being a woman! Our granny was also getting very ill, and we knew she was reaching the end of her life, and, understandably, Pippa started to feel overwhelmed with everything that was going on. She visited her GP who was very understanding, and got Pip some referrals to get herself checked out for breast and ovarian cancer (blood tests, scans, ultrasounds etc) to put her mind at rest. She had also, meanwhile, had an appointment with a CNS (Cancer Nurse Specialist) who had talked her through all the breast reconstruction options, and who suggested that Pippa had her breast surgery first, then once she had healed from that she could complete her family, and then she could have her ovaries removed after that. This sequence of events hadn't occurred to Pippa, but it seemed to solve a lot of her problems! It meant that she would be able to have her breast surgery without having to deal with lifting and carrying babies, and it meant that she had some time before she had to think about having another child. Of course it would mean that Pippa couldn't breastfeed her future children, but that wasn't high on her list of priorities so this seemed like the perfect sequence of surgeries.

Towards the end of 2018 Pip had come to a decision about her course of treatment, and she had an appointment with her breast surgeon. Interestingly, over the course of the year she'd been mulling over her choices, she'd changed her mind several times! As well as my own situation, she'd found out that another woman at work also had the BRCA1 mutation, and had undergone preventative treatment years previously, and she joined a secret facebook group of people with BRCA1 and BRCA2 mutations which she found incredibly useful. Pippa made different treatment decisions to me, and we discussed at length what made her choose to have implant reconstruction. Her surgeon had said that she was a good candidate for flap reconstruction, where the surgeon removes tissue from elsewhere in your body (usually abdomen or back) and reconstructs breast forms in your chest. However, Pippa wanted to avoid surgery which had a long recovery time, or which might negatively affect her experience of pregnancy and childbirth down the line, so in the end she chose to have a double mastectomy with immediate reconstruction using over-the-muscle implants. She didn't really ever consider remaining flat as I have chosen, partly because her body shape is very different from mine, and she felt as though she wouldn't feel right in her body without something 'up top'. She knew that to go flat would likely exacerbate her own insecurities about her belly and bum, and she would rather keep her curves and ensure that she felt good in her body and protected her mental health. 

So on Friday 13 March 2020 (oo-er) Pippa had her surgery. Only days later, due to the COVID pandemic, all elective surgery was cancelled, so she was incredibly lucky to get in under the wire! She came home with two drains in, one which stayed in for a week and the other for a fortnight. Mum went to stay with her to look after her along with Marty, and her son was briefed beforehand that mummy was going to be feeling a bit poorly for a while and he needed to make sure he didn't jump on her or anything. He was really great and just got on with it, and after a while Pip started getting her strength and range of motion back, and she healed really well. Interestingly, before her surgery she'd decided on round implants, but while she was under the anaesthetic, her surgeon had tried them, discovered that they didn't quite look right, and so had put in teardrop ones instead! They are a few sizes smaller than Pippa's old bra size (from a size F to a D), and when I asked her how she felt about them she responded really positively. She thinks they're a great shape, she loves how she looks in all her clothes, and she's happy with the size and the feel of them. Obviously she no longer has nipples, but that doesn't overly bother her (she's undecided about whether or not to have nipples constructed or tattooed, or to just leave them as they are). She has phantom nipples which sometimes itch or hurt, even though they are not there! (I also sometimes have phantom breasts which is super weird.) Occasionally she will have a wave come over her, as she realises the enormity of everything she's going through, but that passes, and more often than not she's happy and grateful to have been able to take preventative measures, reducing her chance of getting breast cancer to much lower than the average woman on the street.

Sisters compared

Many people in the BRCA community who have not had cancer call themselves 'previvors', which is a cute and catchy term, but Pippa insists that she doesn't feel as though she's survived anything. As she terms it, she's "whipped the rug from under cancer's feet", and she would much rather have undergone the preventative surgery than endured chemotherapy. (I completely agree!)

I'm so proud of my sister for the way she has dealt with all of this. She has not finished her journey by any means, but she's achieved so much already, and managed it while caring for her family, keeping her home and bringing in an income, without losing her love of creativity and her incredible capacity to act thoughtfully towards others. I hope you've found this other perspective useful, and thank you Pippa for generously sharing your story.

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.