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.

Pathology results (again!)

Today I went to see my breast surgeon, Miss L_____, for my post-op pathology results. They sent all the tissue they removed on 3 December to the lab, and it's great news: there was no evidence of disease in any of it. So I'm once again officially cancer-free and on the road to recovery. It felt quite emotional actually, and a huge relief. How great to get that news just in time for Christmas and the end of the year.

My surgery went really well. Here's a little update on it all.

Marked up with sharpies for surgery

So I went in on 3 December and was put under anaesthetic around midday, and woke up around 3pm. I had far fewer tubes and wires than last time, just a cannula in the inside of my left elbow for the anaesthetic and pain relief, and two drains coming out of either side of my torso just underneath where my breasts had been, held in place with stitches. I was quite woozy from the anaesthetic but felt great, and so relieved to have them removed at last. I have felt as though I had two ticking time bombs on my chest for the last few months! I managed some dinner on the ward and they let Tanai stay with me until quite late. The nurses were all totally wonderful and checked my blood pressure and temperature regularly through the night. I had my own room but still didn't manage to get any sleep! I think the adrenaline was pumping and I actually felt quite nervous so my body kept waking me back up every time I dozed off. Every time I wanted to go to the toilet I had to carry these two drain bottles with me, and it was all quite awkward, but I managed it.

Very woozy post-surgery dinner

One of my drains on the floor by my bed, draining from my body.

The next morning I was visited by various people, including the two surgeons who had removed my breasts. I hadn't realised but there was one surgeon on either side! I am quite intrigued as to which side was done by my amazing surgeon and which by her registrar, but I guess I'll never know. Both sides look great, really neat and tidy, so both of them did a fantastic job. I have no stitches either: they used glue. And I have been feeling remarkably pain-free, I've only taken a few paracetamol in the couple of weeks since my surgery. A nurse removed my drains under the supervision of a more senior nurse, watched by a student nurse. I had some lunch and then I was discharged. Home less than 24 hours after waking up from surgery, how incredible.

Just before my drains were removed. The boobless wonder!

Since then I have been mainly resting on the sofa, trying to do little walks each day and doing my physio exercises a few times a day. My range of motion is not bad, but I can't lift my arms too high, and I'm not supposed to be lifting anything heavier than a small glass of water. Tanai couldn't be away from work too long (this is my third surgery of the year after all!) so I've had a roster of amazing friends coming over to make me lunch each day, which has been lovely. I've started getting back into my studying, in anticipation of all the essays I have to complete next year, and I've been listening to lots of podcasts. I have bought a giant U-shaped pregnancy pillow which is really helping me to sleep well. And we are being very careful about infection risk, washing bedding, towels and PJs every day.

 The amazing pillow

One of the inevitabilities after surgery is a seroma. This is a gathering of fluid near the surgery site, which the drains would have drained away. Over the last couple of weeks I developed two seroma, right where my breasts had been. They looked like cute little a/b-cup boobs! But they were sloshy and uncomfortable, so when I saw my surgeon today she drained the liquid out of them, leaving me flat again. There was 90ml in the right one, and 150ml in the left one! Apparently I will probably need to go in a couple more times before my body learns to reabsorb the liquid itself. I feel much better now and it was quite emotional saying goodbye to Miss L_____. She was the one back in February 2017 who first told me I had breast cancer. What a rollercoaster it's been since then. And today we said goodbye, shook hands, and with a little bit of luck, that's the last of it.

Of course I still have various follow-up appointments, including one in January with my ovarian oncologist, but officially I'm now part of the 'open access follow-up' programme, which means I have to just contact them if anything feels strange and they'll see me. Given that there is very little left in my body for the cancer to grow in, I'm hoping that I don't have to go back in.

It really feels like a huge milestone, the end of a particularly challenging chapter of my life, and the beginning of a new one. I am marking this change in a number of other ways. We have given notice on our flat here in Clerkenwell, and we will move out in March. It's been lovely living here for 3 years and I was so incredibly lucky to live close to St Bartholomew's Hospital, one of the best cancer hospitals in the country, for my treatment. It's also been a gorgeous, sun-filled space to recover and convalesce. But for various reasons we've decided to move in the new year, partly to get somewhere cheaper and with more space, and partly to move out of central London and to somewhere a bit more 'local' and leafy. It's time to move on.

As you know, I continued to work all through my treatment, even through both my bouts of chemo, which, looking back on it all, was incredible. It was good for my mental health at first, but this year my mental health took quite a battering, and unfortunately work was contributing to a lot of that stress and negativity. So I took the astonishing decision to quit my job and go freelance! Perhaps a little rash, but cancer definitely makes you realise how important it is to feel happy and fulfilled in your career, especially given how much time we spend at work. I have been giving myself a little rest for the last few weeks, but in January I will start up with my own consultancy. I'm just getting my website ready now. And fingers crossed I will quickly find some paying work and make a go of it. I'm very excited about this development and I'm confident it will work out well. I've always wanted to be my own boss.

And finally, perhaps trivially (although it doesn't feel that trivial), I have realised that I will need a whole new wardrobe, and a whole new look. My body shape is completely different now. I am slender and flat on top, and due to my ovarian cancer surgery, I have permanent swelling in my lower torso, so all the lovely fitted 50s-style frocks I used to rock, just won't look right any more. I'm actually really enjoying wearing old t-shirts that my breasts used to distort, and I've even picked up a pair of Whistles trousers from a charity shop which I love. I've not owned a pair of trousers for years! I'm going to operate a 'one in, one out' policy, and only purchase new clothes when I've raised enough money from selling my old ones. I have so many lovely frocks, so I plan to ebay them all in the new year. I will also donate some of the money to Breast Cancer Now, who have been so amazing during my treatment.

Flattie with fish and chips

So there we go! The enormity of it all hasn't quite sunk in yet. But I'm looking forward to a relaxed Christmas up north and a very low-key new year. Bring on 2020 and all the regeneration it promises!

Ready for surgery

Tomorrow is my surgery date for my double mastectomy, so I thought I'd give you a summary of the build up and what I can expect. I saw my surgeon again a few weeks ago and we went through the final prep. It was quite funny actually because she had a student doctor with her and so was using me as a teaching tool. I've been naked in front of a gazillion people over the last three years and I don't have a shred of pride left, so I'm more than happy for someone to learn from my body and my experience. So I stripped off from the waist up and my surgeon asked the trainee 'so what can you tell about this lady before you've even examined her, just by looking?'. The poor girl didn't know where to look, and only glanced in my direction before offering a tentative, 'She has one breast bigger than the other?' My surgeon was not impressed. She pointed at my small radiotherapy tattoo, the one in the centre of my chest. 'What is this?' she asked the student doctor, who muttered that she didn't know. 'That's a radiotherapy tattoo. And if you look at the sides of her rib cage you will find two more. This tells you she's had radiotherapy. Can you tell where she has had radiotherapy? Can you see that her right breast is still red from the radiotherapy?' She then pointed at my scar from my first surgery, which the trainee had failed to notice (to be fair, it's pretty impressively neat and inconspicuous). 'And you can see from this that she's had breast surgery before. And if you look under her armpit you'll see the scar from where she's had lymph nodes removed. All of this you can see before you've even given her a physical examination.' The poor girl was by now red with embarrassment. Looks as though she has a lot to learn!

About a month ago, I had my follow-up appointment with the psychologist, to ensure I was cleared for surgery. We had a lovely chat and she sent a very detailed summary to my surgeon, saying 'I see no psychological reason why she would not be a good candidate for surgery'... and 'she explained that her breasts have not been a big part of her identity through life and mastectomy surgery would therefore not result in a significant change for her in terms of body image and identity'... and 'following my meeting with Carmel my impression is that she has made a considered and informed decision with regards to surgery and has the internal and external resources to help her adjust to this and associated body changes'. So there we are! I'm green lit to have my breasts removed and not have reconstruction.

I also had to have my bloods taken, and swabs of my mouth, nose and groin to check for MRSA.

At my pre-op prep appointment, the nurses gave me a bottle of Octenisan body wash, which is a hypoallergenic antiseptic wash, and instructed me to use it for a few days before and after surgery. This evening I washed my hair with it, as well as my body, and I have to wear clean pyjamas every day, and wash the bed sheets every day on a hot wash. I also have to brush and floss my teeth and use a new toothbrush every day for a few days. This is to reduce the chance of infection. I also had to remove my toenail polish and I am not allowed to use moisturiser or deoderant tomorrow. And I'm nil by mouth from midnight.

Last week we went on holiday to the Isle of Skye for a week, to visit my dear friend Jill who is over from Australia visiting her parents. Jill has been so supportive during my treatment and kept me amused during chemo with tales of her funny son, Billy. Well this week we got to spend a good amount of time hanging out with them both, and experiencing Billy's comedy first hand. It has been a magnificent, restful and restorative week and I'm feeling ready for tomorrow.

In the magic light on Skye

Today I had a few deliveries of things I'd ordered online, including a large U-shaped pregnancy pillow to help me sleep when my wounds are new, and a huge online food shop so that our cupboards are stocked up. I've also got two heart-shaped pillows from the volunteers at 'Jen's Friends' who sew these pillows which you hook over your shoulders and they prevent your arms from irritating your wounds. A few weeks ago we went to 'Cook' in Maida Vale, as my magnificent former colleagues in Australia had sent me some vouchers to spend. They make posh frozen meals basically, so our freezer is full of yummy 'homemade' food which should make the next few weeks easier. I have a rota of my friends here in London coming to make lunch for me for the next 2 weeks as Tanai needs to get back to work as soon as possible this week and I'm not allowed to lift anything for a few weeks. As this is my third surgery this year, he's pretty much used up his compassionate leave, (and some!). I'm so lucky to have such a fabulous, global network of friends helping support me through all of this.

So tomorrow I have to be at the hospital at 7am, and apparently I'm first on the list. Of course, I could always get bumped if there's an emergency, as mine is elective surgery, but hopefully it will all go smoothly as planned. I'll be in overnight and then home and glued to my sofa for a few weeks. I'm just packing my bags now and then I'll try to get an early night. We were hoping to get our Christmas tree up today but they didn't have any stands in the shop, so we'll have to do it at the weekend. This means Tanai will bear the brunt of the decorating responsibilities (and I'll have to direct them from the sofa).

I shall keep you posted on instagram as to my progress!

Mastectomy planning

This Tuesday I saw my breast surgeon, Miss L______, and now that I've finished with chemo, it's all systems go as we plan for my preventative breast surgery. To recap, back in 2017 when I was having treatment for breast cancer, I didn't know that I carried the BRCA1 gene mutation, so I just had a lumpectomy and a couple of lymph nodes removed for testing. My pre-surgery chemo had shrunk the tumour to a tiny size, so the surgery scars are barely visible now, and the lymph nodes they removed were all clear, so it hadn't spread anywhere beyond the breast.

However, when I found out last year that I was BRCA-positive, I knew that I wanted a preventative double mastectomy, as this reduces my risk of another breast cancer from 80% to 2%. For me, this was a very easy decision. Regular readers will know that I decided to have my ovaries removed first, and I'm so glad I did! They found a tiny bit of ovarian cancer, so I was able to have more treatment to ensure that's all removed and nuked.

I know it seems as though my treatment is never-ending, but with a little bit of luck, this should be the last of it. And I'm not going to waste any time! I'm having my surgery on Tuesday 3 December. We discussed a whole bunch of stuff in my appointment on Tuesday and I signed my surgery consent forms. And now I have a whole heap of things to get done before the big day. This afternoon I had a full body CT scan, (where I had to get injected with a contrast dye that made me feel as though I was peeing) and I get the results of the gynae sections on 9 October. Then on 1 and 7 October I have an MRI, a mammogram and an ultrasound examination. If all the tests are clear they'll go ahead with the removal of the breast tissue, skin and nipples on 3 December. I have decided I don't want reconstruction so she is going to make sure the two scars are as neat as possible and I will live the rest of my life as a flattie. Apparently it's likely that the scar on the right breast will not be as neat, because I've had radiotherapy on that breast back in 2017. I will stay in hospital overnight and have drains inserted to drain the fluid from my body. And all being well I can return home the following day. I'll be injecting myself with more blood thinning medication after the op, and I need to watch out for infections. I will probably get a seroma under each armpit which is where the fluid gathers. I will have to either let these be absorbed back into the body naturally, or you can have them drained. I had one after my last op which was drained in the hospital so it's not too much of an issue.

Consent form

So, as my platelets were only 75 the last time I had my bloods done back in August, I had to get my bloods done again today, and I will need MRSA swabs done at my pre-op assessment on 12 November. I also need to have one final session with the hospital psychologist, to 'green light' me for having surgery without reconstruction. (Yes, this is the ridiculous situation whereby reconstruction is seen as 'normal' so they don't worry about you then, but choosing to go flat requires a psychological assessment.)

I'm really pleased the surgery is so soon, for a number of reasons. Since finding the ovarian cancer earlier this year, I have understandably been much more anxious about another breast cancer growing in my breasts since I finished treatment. I feel as though my breasts are just ticking timebombs on the front of my body, so I'm really keen to get rid of them. I have a bunch of stuff going on in November: I'm speaking at a conference in Birmingham about 'reimagining leadership', I'm visiting my grandma in York for her 90th birthday, and Tanai and I are heading up to the Isle of Skye for a holiday. I didn't go on any holidays this summer because I was recovering from surgery and going through chemo, so I'm really glad we will still get to go on holiday. And I will also get to see a dear friend of mine, Jill, who lives in Australia who I haven't seen for ages, as she is visiting her parents on Skye while we are there. Jill kept my spirits up during my treatment in 2017 by texting me the hilarious things her son Billy said. There's nothing better when you're feeling like shit from chemo being inspired to have a real belly laugh because of something a little boy said on the other side of the world. So we will get back from Scotland on 1 December and then I'm heading into theatre on 3 Dec. Great timing. Also I will get to spend December recovering at home, because I finish up at my current job on 18 October, and I'm planning to start my own business in the new year. By January I should be ready to put all of my energy into that, which is very exciting.

They will send everything they remove from my chest to a lab for testing, and a couple of weeks after surgery I will see my surgeon again for my pathology results. If they are all clear, it will be a huge milestone. That will mark the end of three years worth of cancer treatment, and the beginning of the rest of my life. If they find something in the tissue, I will likely need further surgery to remove lymph nodes and more chemo. I'm trying not to worry too much about these results, but you can guess what's at the top of my Christmas list, can't you?

So it's all systems go. I'm really pleased to have the date, because I can start to plan the next few months in earnest.

General update

My last round of chemo, the fourth round, was on Thursday 1 August, and it coincided with my third Zometa infusion, which I have every 6 months to protect my bones. Unfortunately it seems that the side effects compounded each other and I had 5 days of feel wretched and incredibly nauseous. For most of the weekend afterwards I couldn't really make it out of bed, the fatigue was immense. It really knocked me back. For this reason, and because I've had so many delays this time, I was dreading chemo 5 this week. First of all, I could tell that my bloods wouldn't be good enough, so I'd be pushed back another week. And I was dreading how I'd feel, and how long the side effects were going to last. Chemo is cumulative, after all, so it stands to reason that you feel worse each round.

So on Thursday I went to my regular pre-chemo oncology appointment, but this time I was prepared for a tough conversation. When Dr M____ asked me how I was, I explained that, while I'm certainly feeling much better physically than I did when going through chemo in 2017, I've been struggling with the impact it's having on my life, and therefore my mental health is taking a battering. I have tried to avoid putting my life on hold this time, but when my chemo keeps getting delayed, it's incredibly hard to plan things. We had a good conversation about it, and we have decided to stop chemo altogether. I was so relieved I got a bit teary! There is no evidence that suggests that 6 rounds would be more effective than 4, and the cancer I had was so tiny that it's highly unlikely there are any rogue cells remaining. And if there are, 2 more rounds are not going to do anything to them if the 4 I've had already haven't nuked them! Let's face it, this chemo was elective, and my first dose was double that of the subsequent doses. As it turns out, my bloods weren't good enough anyway (platelets were only 75), so I'd have been delayed, as I predicted. But I'm so pleased we've made this decision and I don't have to go through carboplatin again.

I now have to have a CT scan (standard after a course of chemo) and I will see the oncologist again in 6 weeks' time. Then I will have a check-up every 3 months, with a CA-125 blood test (for signs of ovarian cancer) for 2 years, after which it will become every 6 months, and then every year, until I hit the magic 5-year mark.

So now I have to concentrate on getting myself stronger and fitter in preparation for my mastectomy. I have a mammogram and an MRI in October, and then I should be seeing my breast surgeon some time in November to get the results and to plan for surgery. I'm hoping that can be sometime soon in the new year. There's still quite a lot ahead but I feel as though I've passed another milestone in my treatment.

Celebrating another milestone with St John's donuts

In other news, I've been accepted as a volunteer counsellor for Breast Cancer Care, as part of their Someone Like Me programme. This is where women who are newly diagnosed can be paired with someone who has been in a similar situation, and have a series of phone calls. Before I can do this, I have to go through a training programme, and then I am mentored for my first few calls, before I'm a fully fledged counsellor. It's a voluntary position for a minimum of 3 years. I'm really looking forward to doing this. It's so important for me to 'give back' in a meaningful way, and help others going through what I've gone through.

I've also recently been seeing a new counsellor myself, through my GP, and I'm having a much better experience this time than I did with the psychotherapy team at Bart's. I see her every Thursday morning for an hour, and we've talked about so much. She has really helped me to think about things in a different way, and pursue lines of enquiry that I'm finding really helpful. I have 4 more sessions left, so hopefully that will feel like enough.

For those of you who don't follow me on instagram, I've also finished my post-treatment craft project: a baby blanket for a good friend who gave birth to a little girl a month ago. I crocheted when I was confined to my couch after both my surgeries, during chemo, and as I've been recovering each round at home. I'm so proud of the result!

The finished blanket!

Cancer survivorship course and lymphedema clinic

It's been a week since my second round of chemo and I'm doing well, despite not taking my steroids this time. As with last time, the first couple of days were fine, I felt well and had loads of energy. Then days 3-5 (Saturday to Monday) I felt pretty rubbish, the nausea kicked in and the fatigue hit me. Unfortunately, as I hadn't planned on this week being a chemo week (but my treatment was delayed) I had made quite a few plans. Lunches, coffees and dinners with friends and visitors from overseas. I soldiered on through them all, and then crashed on Sunday, exhausted. I tried to make it into work on Monday but the nausea was overwhelming, so as soon as I arrived I had to turn around again and come home. But by Tuesday morning I felt fine again and I have been doing okay since then, cycling into work, or walking home, trying to ensure my resting heart rate doesn't creep back up too much.

My hair is doing really well too. I'm loving my new hair style. A few strands of hair come out each time I wash my hair, but nowhere near as bad as the clumps that were falling out when I had chemo in 2017. I'm restricting myself to only washing my hair twice a week to minimise hair loss, so hopefully I'll get to the end of chemo with just a bit of thinning. I did keep all of my headscarves from last time I had chemo, but it's nice not to have to use them again. Although I have been wearing some of them as regular scarves, as they're so beautiful!

New earrings!

On Monday evening I started an online course on 'Cancer Survivorship' which I think is going to be interesting. It's from 7-9pm on Monday evenings and we all join each other from all over the country via Zoom, an online meeting software. It's for people of any gender, age and cancer type, and includes participants with primary and secondary cancer. It has four main components, focussing on our psychological, physiological, immunological and emotional health. It's run by a passionate, knowledgeable and enthusiastic guy called Sam and he has run this within the NHS before, and many times online. It's evidence-based, but also rooted in positive psychology and influenced by ayurvedic medicine. He cites some incredible case studies to back up his advice, and over the next few weeks we will gain lots of knowledge and techniques, which I'm looking forward to. The intro session laid the foundations, focussing a lot on positive psychology, and how we can use our minds to determine some incredible physical outcomes. I think it will be really useful, I'll keep you posted.

Joining the class

This week I also had my appointment at the lymphedema clinic, where I saw a nurse who gave me some advice about the swelling I now have around my pelvis and abdomen following the removal of my pelvic lymph nodes. She has taught me some 'MLD', or manual lymphatic drainage, which is basically where you perform massage on various parts of your body to encourage the lymph to drain and reduce swelling. She also gave me some kinesiology tape, and showed me how to stick it from my back around to my stomach, so that it massages my lymph around my body while I'm walking along. She has also ordered me some compression tights which should help, and she told me to buy some cheap spanx-type shorts to create more compression around that area. LOL. I also have to get a gel cover for my bike saddle to protect my lady parts from problems caused by my surgery. She said that you can pay to have manual lymphatic drainage done privately by experts, but that it's better to try to get someone to teach me techniques so that I can ensure I'm doing this frequently and getting maximum benefit. 

Tanai heads off to Colombia for 3 weeks on Wednesday, so I'll be home solo for a while. I've got a few little bits and bobs planned but I'm hoping to have a relaxed summer and continue to recover from my surgery and build my strength.

Chemo delays

I was supposed to have my second round of chemo last week but it was delayed and I ended up having it yesterday instead. I went to see the oncologist last Wednesday as usual and all seemed fine. I reported my side effects from the first round to him, and then we discussed various things. Firstly, I asked if I could skip the steroids this time. I'm convinced that the majority of my side effects are from the steroids rather than the chemo, and they just make me feel like crap. He said their only use was anti-sickness, and I have plenty of domperidone which are my regular anti-sickness, so I should be fine to skip them. He prescribed them for me just in case, so I can take them if I feel I need to. Then I asked if I can have the GCSF injections, which are the ones I took last time I had chemo to boost my neutrophils. He said to wait until next time, which kind of pissed me off as I feel that now is the time to start taking those, and aren't they cheaper for the NHS than a trip to A&E? But sometimes you just have to accept no for an answer. Next up I mentioned that my pelvis is still quite swollen post-op and I'm a bit worried about it. He examined me and said it's just a regular oedema and it should go away, but to keep an eye on it. I might go and get a second opinion. Finally he informed me that the results of my kidney function tests were in, and the good news is that my dose of carboplatin chemo, which was 790mg for the first round, will only be 450mg from now on! This is great news, as it's almost half of what I had before, so should mean I get reduced side effects.

So I trooped up to the 7th floor the next day feeling chipper. I'd made a picnic lunch of gimbab (Korean sushi) for me and Becky, who had taken the day off work to come with me. Unfortunately when the nurses called me in, they said that my platelet counts were too low. They need to be at least 100 but they were only 62. They took some more blood and sent me home, saying they'd call me in about 3 hours and if my bloods were good, I'd have chemo that day, but if not we would have to delay. So Becky and I went back to my flat (I'm so glad I live so close by!) and made some of her famous granola (it is incredibly delicious, hit me up for the recipe if you like). And ate lunch and sat and chilled. Eventually I got a call from the nurse saying my platelets were no better, and actually my neutrophils had dropped to 0.9, which is in the danger zone, so I needed to come back to the hospital to pick up some GCSF injections (vindicated! I was right in the first place, Mr. Oncologist!). They wanted to push chemo back to Monday, but I insisted that they push it back a whole week, to the following Thursday, so that it didn't disrupt my life too much. I know that treatment is important, but I'm also trying to get on with my life, and I didn't want the entire working week to be written off. Becky was incredibly gracious about it, and said she enjoyed hanging out and the day off work was not wasted (thanks love!). And I tried very hard not to get upset about the delay. This will push my entire schedule back a week, so I won't have my final chemo until September now. Fingers crossed there will be no more delays.

 Becky's amazing granola

I googled how to increase platelet counts, and got lots of advice about eating papaya, pomegranate and pumpkin, as well as brocolli and leafy greens. I've enjoyed quite a few pomegranate smoothies in the intervening week.

Wonderful medicinal papaya

Medicinal fruits

So yesterday my friend Rima came with me to Bart's, and my platelets were a stonking 173! Happy times. How amusing to be so jubilant about receiving chemo! We had a very chatty Portugese nurse and we wiled away the time with great chats ourselves. It's such a fab opportunity to catch up with friends, if a little strange for them to come into that environment. I'm so used to it now, Bart's is like my second home, but I suppose it's all a bit alien to someone who isn't in 'the system'. We came home in time for lunch and then Rima went off to do some work and I napped for a couple of hours. Then we went out to see a talk at the Roundhouse, and I managed really well. I'm feeling pretty good today, the nausea is low and my energy is good, but the side effects didn't really kick in until the weekend last time so I'm bracing myself. I made quite a few plans for today and tomorrow, thinking it would be one of my 'good' weeks, so fingers crossed I'm okay.

Administering my GCSF injection

My ever-expanding diagnosis list in medical lingo

Tanai has been away this week in Canada at a conference, but he arrives home tomorrow. It's great that I have so many fabulous friends who can help me out in the meantime, but also to give him a break. My next chemo appointment is Thursday 4 July, so with luck, there will be no dramas in the meantime.

Breast surgery postponed

Today I went to see my breast surgeon, Miss L____, for an appointment we had scheduled a while ago. The original plan was for me to have my preventative oophorectomy back in February, recover from that, write my masters dissertation, and then have my preventative double mastectomy in September. As you know. things have not gone quite to plan, and I'm now recovering from much more major surgery, and undergoing a course of chemotherapy.

Miss L____ gave me a brief breast examination, and didn't find anything untoward. She then caught up with the various things I've done since we last saw each other, in preparation for my surgery. I've discussed all my options with my Breast Care Nurse and decided to opt for a bilateral mastectomy without reconstruction. I've had my medical photos taken (these were taken at the Royal London Hospital and it was a very strange experience, almost like a fashion shoot! And there was me, naked from the waist up, in front of all the professional photography lights having my 'before' photos taken!). And I've seen the Cancer Psychologist, to get signed off for not having reconstruction.

Today's news was slightly annoying. Apparently when someone has had such serious surgery as I've just had, they like to wait at least 2 years before performing any further elective surgery. Two years! That would mean I cannot have my breasts removed until April 2021. As you can imagine, my recent second cancer diagnosis has made me feel a sense of urgency about getting my breasts removed. I know that this BRCA gene mutation is lethal, and my boobs feel like two ticking timebombs attached to my chest! I just want to get rid of them ASAP. So we talked through everything, and I have a lot of things going in my favour. I'm young, fit, a non-smoker, and I'm recovering well from my recent surgery. Also I'm doing well with the carboplatin so far. And I don't want reconstruction, so the surgery I'm opting for is less major than if I was having reconstruction. Apparently they have a big meeting once a quarter with all of the consultants from all the different departments, kind of like an uber-MDM, where both the gynae team and the breast team will attend, so they are going to discuss my case in the next meeting, at the beginning of July. Miss L____ knows that I'd like to have the surgery as soon as possible so she will put my case forward, and they will discuss when is the earliest possible time they're happy to operate. And fingers crossed it is not too far away!

In the meantime, she's going to check that my annual MRI, mammogram and ultrasound are all booked in for October, so that I can at least get some peace of mind that there's nothing sinister growing in there in the meantime. And I'm going to see her again in September once I'm finished with chemo, so we can talk about next steps, and hopefully get a date in the diary. It's a bit disappointing as I was keen to get it done, out of the way, and be on the road to proper recovery, with all treatment (hopefully) behind me. But of course I want to do what's right for my body, and to get the balance right of reducing my risk of a new cancer, while also ensuring my body has had enough time to recover from my recent surgery. So for now, I shall wait.

In other news, I am planning to go back to work on Monday. I've been off work for 3 months in total, which feels like an incredibly huge amount of time, but I really needed that time to recover from both surgeries. I'm going to work through chemo as I did before, and I've moved my day off each week to Thursdays (as I only work 4 days a week) to accommodate my chemo treatment every 3 weeks, and I will work from home on Fridays on my chemo weeks. I will also have some flexibility if I get hit by cancer-related fatigue, in that I can take short days if necessary. My employers have been incredibly supportive throughout this whole malarkey, which is great. I'm excited about going back, I have missed work a lot, and my team especially, but I am also quite nervous. I've never had such a long time off work before and I know that lots of things have changed since I left back at the end of February. Some people that I worked closely with have left, and others have been hired in my team who I've never met. I've also been spending my days doing very low-key activities, such as reading, crocheting, doing little walks. And taking afternoon naps! All this has been essential for my recovery, as I have prioritised physical healing and my mental health. But now I have to get back up to speed, pick up the pace of life I had before and go back to my leadership role. Hopefully I will get back to it like a duck to water, but there will be butterflies on Monday morning for sure!

Chemo begins (again!)

Yesterday afternoon I had my first chemo of this second batch. We went to visit the 'Fearless Girl' statue in Paternoster Square just before my chemo appointment, so I could take some 'fearless' vibes in with me. So far I'm feeling pretty good. I slept well, I have very mild nausea but it didn't stop me eating a delicious dinner last night and breakfast this morning, so that's a good sign. I'm being cautious though, as sometimes the side effects don't kick in for a few days, so let's not get too jubilant. Definitely a lot better than my first chemo last time. (Tanai and I have been reminiscing about it, and I unearthed a few buried memories!) I also started taking my anti-sickness meds and steroids this morning and although I only have to take them for 3 days, I remember that some of my worst side effects last time were from the drugs designed to combat the side effects of chemo (ah, the irony).

Fearless girls

Receiving my infusion

Crafting during chemo

So, a bit of an update on the last few days. I have been doing quite a lot of prep for chemo, including spending most of Wednesday in hospital testing my kidney function, as that's how they determine the chemo dose. I had to go in at 9am to have a cannula fitted, and then they injected me with radioactivity, and then I had to go back every hour until 3pm to get my bloods taken from the cannula. The nurse got the cannula in first go (we were jubilant, remember my veins were destroyed by my last chemo) but unfortunately three different nurses tried 8 times to get the needle in for the radioactivity, and every time they found a vein it collapsed. In the end, they had to put it in my foot! I've never had needles in my foot before, it was kind of weird, but it worked.

On Wednesday I also had deja-vu as I went in for my pre-chemo appointment! The ward sister said 'Welcome back' and then explained that of course she wasn't welcoming me back as in 'isn't it great you're back' but that at least if I have to be there on the chemo ward there is a warm welcome for me. We rattled through the instructions, because of course I'm an old hand at this, but I was pleased to hear there have been some changes since I last had chemo. They always solicit patient feedback and they are responding to that feedback. Sometimes I would wait for hours in the waiting room or on the ward, as the drugs can take ages to come from the pharmacy. They have apparently improved the pharmacy procedure, and they are also communicating better about when things will be ready, so that instead of 'oh you're on the list' they can at least estimate when they will be ready. And they are introducing a pager system, where you will receive one of those little buzzers you get in some restaurants, and you can go off and hang out in a cafe, the Bart's quad or the Maggie's centre, and they will buzz you when it's time to come back up to the ward. Pretty cool!

The Bart's quad and fountain

It's been 6 weeks since my surgery and I'm healing well. Scar update photo below, so don't scroll if you don't want to see it! It's all completely healed now, which is great. I'm massaging it twice a day with oil and it's looking very neat and not too bad. I'm doing as many little walks as I can, to get my fitness levels back up slowly, and some gentle physio to get my strength back. My resting heart rate has gone right back up to 75 after the surgery (it was 58 when I was at my fittest last year) so I'm keen to get this down to improve my general health. After a couple of weeks of little walks it is already down to 72 so that's good. But it doesn't take much these days to get my heart rate up, so I can see my fitness levels have a long way to go. I love how much my fitbit helps me monitor my own health and fitness. One thing that I'm struggling with a bit since surgery is my changed digestive system. When they had me opened up on the operating table, the surgeon removed my intestines to have a look at them and check for cancer, so there has been a readjustment period since he put them back in. Also they have so much more room now as loads of other things have been removed! I've been eating really healthy food and trying to make sure I have plenty of fibre, but every time I eat, my stomach gets hard and swells right up. It's swollen quite a bit anyway, but it gets really distended after a meal. I suppose it will take a while to get back to normal (or a 'new normal') but it's something I have to be really careful about. And it's being really sensitive to certain foods, especially sweet ones. I can't eat too much in one sitting and I'm avoiding eating too many sweet things. It's great that my body can talk to me and tell me what it needs!

Okay here's the scar. It's actually much longer, it extends further below the belly button than above, but I'm not flashing my pubes online, ha ha. I love the way the surgeon swerved to avoid my belly button, even though that already has scars in as it's where they put the camera in for my first surgery!

So unless anything major happens, I'll update you all after my second chemo on 6 June.

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!

At home recovering

Reading over my last post, I sounded a little down, which I think is understandable given that I was in so much pain, feeling incredibly sleep-deprived, and completely immobile. Now that I am home and slowly regaining my strength, my spirits are also rising. It's so great to be back in my own bed, although I'm having broken sleep, and I'm still not able to really do much more than occasionally move from the couch to the bathroom and back. I'm slowly regaining my appetite, and the doctor has recommended I eat a protein-rich diet to help my wound heal, so I'm trying to make sure I eat lots of protein. I have a craft project on the go, as I'm still not really ready to focus on reading a book just yet, and I'm listening to the fifth Tales of the City book on audible. Tanai is working from home this week and basically doing everything around the house, as I'm not allowed to lift anything and can't even bend over to pick something up off the floor. He's being a total legend.

Eating lunch at home

I want to take a moment to acknowledge how incredible our NHS is. For those of you not UK-based, this is the National Health Service, a 70-year-old institution funded by our taxes, which provides universal healthcare free at the point of delivery for all people residing in the UK. I received all my treatment for breast cancer through the NHS and now I'm having my ovarian cancer treatment with them too. I haven't paid a penny and won't need to pay anything, which I know differs markedly from the healthcare provisions in other countries. Having cancer is stressful enough without having to worry about getting into massive debt to pay for healthcare! Yes, their systems and processes need updating (it's very paper-based) and they are being run into the ground due to chronic underfunding by the Tory government and a major shortage of nurses due to Brexit, but it's still (just about) creaking on, and I am so incredibly grateful. They are saving my life for a second time.

I stayed in hospital for 6 days after my surgery. Each day the NHS worked like clockwork around me and the other patients on my ward. I had my temperature and blood pressure checked hourly in the first few days, and every 3 hours once I had stabilised. The doctors did their rounds in the morning, assessed me, and revised their judgements about when I should go home. My bed linen was changed every morning and I had a little wash and donned a fresh gown. All my meals were provided, as well as regular coffees, teas, hot chocolates. The food is a bit like school dinners, and consisted mainly of overcooked, bland vegetables with questionable meat, but it was nutritious, and also free. The nurses work in 12-hour shifts, a day team and a night team, so there is round the clock care. I had a buzzer on my bed which I could press at any time, and a nurse would come and attend me, so when I was feeling incredible pain at 3am, someone came and brought me liquid morphine to ease the pain. My wound dressings were removed by two student nurses under the supervision of the ward nurse, which they did very well, and they thanked me for allowing them to get experience doing this as it all counts towards their nursing qualifications. And when I was discharged, I was given a massive bag of meds: 3 different types of pain relief to last me 7 days, the rest of the course of antibiotics they have put me on, some tablets to prevent stomach ulcers due to the pain relief, anti-sickness tablets, and 28 little injections that I have to inject myself in my belly for a month to prevent blood clots (due to being immobile). Once again, no payment exchanged hands for these. 

They do so many thankless tasks, changing my bag of pee when I had a catheter, turning and lifting people who are immobile, dealing with people who are cranky and distressed, and in one instance, racist (the lady next to me was on the phone complaining to her husband about how 'all the nurses were blacks'!), and they are paid in some instances less than the London Living Wage. It makes me so angry that we live in a culture which values care work and other vital professions, such as teaching, on such a low level, and yet values other types of work (eg banking, politics) so highly. Our society relies on people in the caring professions to have some kind of 'vocation', and to do the job because they love it, not for the money. This is fine, I've never been particularly motivated by money, but you need to pay people a decent living wage. One of my chemo nurses quipped that she would be better off getting a job in retail as it pays more and is less stressful than nursing! And this is being borne out by the numbers of people leaving the profession, and the reduction in people applying to train. Last year there was a shortage of 70,000 nurses applying for job in the NHS. Brexit has a lot to do with this, as Europeans are uncertain of their rights to work here, but also other non-Brits are feeling less and less welcome in the UK. I would say, over the two years of being treated for cancer, around 10% of the people caring for me have been British. The NHS would fall apart without migrant workers, and that is exactly what it is doing. I am witnessing it crumbling from the inside. The nurses and doctors are all so overworked, you can feel the strain on them of being short staffed. They are all having to cover each other's duties and it's taking its toll. It's incredibly tragic to see, but with the continuing conservative governments and their ongoing privatisation of NHS services, I don't see how this trend can be reversed. I feel lucky to be getting my treatment in the twilight years of the NHS, and hope that I can once again be cancer-free before it totally falls apart.

I'm going to post a photo of my scar at the bottom of this post, so don't scroll down if you're squeamish, as it's quite a Frankenstein-esque scar! I have 42 industrial-sized staples in there, which I need to get removed at my GP on Friday. Then next Wednesday I go back to clinic to see my surgeon and find out the pathology of all the elements they have removed, and get the next steps. Until then, it's a glacial recovery, slowly getting stronger and more mobile each day.

 What a scar!