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.

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.

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!

Recovering from surgery

I drafted a post last week about how I was recovering from my oophorectomy, but didn’t get chance to publish it before I headed back in for my second surgery. The two experiences are markedly different. I guess all of that is irrelevant now, as this more major surgery has taken over. I thought I'd give a summary so you know how I'm getting on. I won't sugar-coat it, it's tough. This is the most major operation I've ever had in my life, and I've got to admit I'm struggling. But each day I'm getting a little stronger, so I just need to be patient and take it day by day.

In Recovery

Jugular cannula!

The surgery went well, the surgeon had a look around and didn't seem to find anything untoward, and I only lost 220ml of blood, so didn't need to have a transfusion, or go onto the High Dependency Unit, which is good! I was in the recovery bay until 2.30am on Wednesday morning though, as my blood pressure was really low, and they wanted it to come up before I went on the ward. I've been on the ward since then. So they removed my uterus, cervix, all my abdominal and chest lymph nodes and my omentum, which is part of the peritineum, and to do this they had to open me up from just below my breasts to my lower abdomen. I'm going to have an epic scar! It took them almost 6 hours. I also woke up with way more tubes than I was expecting.

- They put a cannula in the jugular vein in my neck, and then stitched it to me! This was an emergency line in during the op which I don't think they used in the end. When they removed the tube from it, it was about 6 inches long. Eurgh.

- They also put a cannula in an artery in my left hand.

- They also put a cannula in a regular vein in my left hand, which is still being used to give me pain relief

- They also put a cannula in a regular vein in my neck, which is still being used for pain relief and anti-nausea. They used my neck because I can't have sharps in my right arm due to having lymph nodes removed a couple of years ago during my breast cancer op

- They also gave me an epidural in my back, for pain relief during the surgery and for the first couple of days afterwards. I assumed I would never have an epidural because I thought they were just for childbirth! It was pretty cool, and when they removed it yesterday the nurse showed me the blue hooked tip which is used to deliver the anaesthetic

- They also had a feeding tube hooked into me via my nose all the way into my stomach

- They also had an oxygen tube hooked into my nose and round my ears, delivering me pure oxygen

- I also had a catheter as I couldn't walk so needed to be able to pee

Now, two days later, I just have the two regular cannulas and my oxygen tube, so there are slightly fewer wires to worry about!

I'm in a room for 4 people, and unfortunately the woman in the bed opposite me is the world's loudest snorer! She's been at it like a generator and seems to have an incredible capacity to fall asleep at all hours. I have earplugs and I can still hear her grating snore through them, it's so loud! Also, they have to do observations on me hourly, checking my blood pressure and temperature, so I'm not getting much rest. My pain relief has been switched to a PCA, which is controlled by me, so I press it every time I require pain relief. This is all very well, but it's forcing me to choose between sleep and pain relief! I'm still not allowed to have solid food, but I've graduated to soups and yoghurts, which means I can now also have ibuprofen in my mix of pain meds.

On the first day they insisted that I stood up and got out of the bed and into a chair. I felt very dizzy and only did it for a few minutes, but it felt like a great achievement. Last night I had a burst of energy and did it again, and managed to stand for about a minute. Today I've been able to walk to the bathroom twice, although very gingerly.

I'm significantly more incapacitated this time round, although I was lucky enough to have some friends bring me yummy food after the last op, so hopefully that will continue to happen after this one! Once again everything they removed will be sent off to the lab, and we will get the pathology reports in about a fortnight, and then we will crack on with the rest of treatment. I'm keen for it all to start, as the sooner it starts the sooner it will finish. I've also donated my tissue to a tissue bank -- so once the lab is done with it, instead of being incinerated, it will be sent to the tissue bank, for both local and international studies. Another opportunity to help medical science and improve cancer care for patients in the future!

I suppose that was a slightly pedestrian, descriptive post, but I felt the need to document it. I'm confident I shall get stronger every day and continue to fight back.

Ding Dong: Round Two

So I have had some pretty shitty news. As you know, a few weeks ago I went into hospital for a preventative oophorectomy, to remove my ovaries and fallopian tubes in order to prevent me from getting ovarian cancer to which I am genetically pre-disposed. After removing them, they sent them off to the lab, and unfortunately ovarian cancer had already started to grow. So now I'm facing another few months of treatment to tackle this second cancer diagnosis, just as I was starting to feel strong again after beating breast cancer.

It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.

And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).

Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.

I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue,  it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.

The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.

As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.

The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.

Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.

It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.

Ready for my oophorectomy

I'm sitting on the sofa with a hot chocolate and a shortbread biscuit: the last things I'll eat before fasting for my surgery tomorrow. I'm as ready as I'll ever be. Really hoping it all goes smoothly. I've had a lovely few weeks of birthday celebrations, as I turned 40 on Saturday, so it's really been a lovely build-up to the op!

Bye bye ovaries! Not to scale.

So as a reminder, I'm having my ovaries and fallopian tubes removed tomorrow. I had my pre-op assessments on Wednesday last week. I had to go to the Royal London Hospital in Whitechapel, where my surgery will be tomorrow, and have various tests. I had swabs taken of my mouth and nose (so they could test for MRSA), they checked my weight and height, and asked me loads of questions, including some really strange ones, like did I have any bruises. The nurse was really laid back, almost worryingly so. It's a bit strange being in a different hospital and realising that each has its own culture and feel about it, and the Royal London feels so different from St Bart's. I haven't met my actual surgeon yet, I'll do that tomorrow, but I was then sent to another room where another doctor asked me a whole load of questions (including lots that the nurse had asked me). I'm really not sure why I had to answer all these questions twice, but hey ho. 

The nurse gave me 4 pre-op drinks -- basically carbohydrates and electrolytes. I've had 2 this evening and then I have to have the other 2 in the morning before I stop drinking water altogether. She also explained that after the operation I will have to inject myself every day for 28 days with something to prevent my blood from clotting. Urgh, not looking forward to that! I think I'll spare Tanai the pain of having to do it, and learn to do it myself. She said it was supposed to be Tinzaparin, an anti-coagulant which prevents DVT, but due to the impending Brexit there is a shortage across the NHS of this (and many other) drugs, so I have to have a substitute. Another reason to be angry about Brexit! I wonder how many people's health is jeopardised because of this.

 

I had to have 7 vials of blood taken (seven!) and the nurse was so useless. She tried twice to find a vein, and for some reason I got a really bad vibe about her. I just knew she wasn't going to find one, and I felt quite distressed. Over the course of my whole treatment, I have had countless needles stuck into my arms, by many many people, and I have started to see when people are good at it and when they're not. And she wasn't! (Also, she inserted the same needle twice which has never happened before, which gave me great misgivings.) Of course it's made harder now because I'm only allowed to have needles in my left arm, thus halving the number of veins they could attempt to use, and my veins are still rubbish from chemo, but I knew she wasn't very good at it. I asserted myself and asked her to give me my stickers and that I would go and get my bloods done at St Bart's. I did head into Bart's on Friday to get my final Zoladex injection and the lovely woman in the phlebotomy clinic found a vein first time and took the seven vials of blood in no time at all! So I'm really pleased that I didn't just sit there and let the nurse jab at me incessantly with a needle.

So this evening I've packed an overnight bag, removed my toenail varnish as instructed and I'm going to try to get as good a night of sleep as I can. Tanai will be coming with me to the hospital tomorrow and he's working from home for a week so he can look after me for the first week. I'm not allowed to lift anything for 6-8 weeks so any offers of visitors (especially those bearing home cooked food!) are welcome.

Today is also exactly 2 years to the day that I received the life-changing news that I had cancer. It feels like a lifetime ago. I can't quite believe how much has happened since then!

Genetics

Another significant update from me. Some of you may remember that I hassled my oncology team to refer me for a genetics test last year while I was going through chemo. A small percentage of breast cancer cases are caused by a genetic mutation, called BRCA1 or BRCA2 (which stands for 'BReast CAncer'). This mutation also causes ovarian cancer and my dad's sister, Trish, died of ovarian cancer in her late-40s which planted the seed of suspicion in my mind when I first heard about these genes. My oncologist refused to refer me, as I didn't quite meet the NICE (National Institute for Clinical Excellence) guidelines for referral. This is because my cancer was triple positive, and genetic cancers are more likely to be triple negative. Also I only had one relative who had a breast or ovarian cancer diagnosis, and NICE wants you to have 2 or more. But then I heard from a woman in one of my support groups that the Royal Marsden hospital routinely BRCA tests everyone who is diagnosed with breast cancer when they are under 40 years old. (This is because the younger you are, the more likely it is that genetics have caused your cancer diagnosis rather than 'lifestyle factors', as you haven't been alive for as long!) So I pushed more firmly when I had a registrar see me instead of my regular oncologist, and I got my referral. It took ages, but in January I had my blood test done and in May I found out that I carry the BRCA1 gene mutation.

I've been keeping it quiet for a while because it was such significant information, I wanted to process it, and decide what my next steps are. I was tested at the genetics department at the Great Ormond Street Hospital, and as part of the testing they provide you with genetic counselling, to help you make informed decisions and understand the implications of carrying the mutation. I have also read a lot of research so that I feel I have all the information to hand.

Firstly, I've decided to have an oophorectomy. This is surgery to remove the ovaries and fallopian tubes, to prevent ovarian cancer. With the gene mutation, I have a 40-60% chance of getting ovarian cancer. Ovarian cancer is very hard to detect, and there is no screening available, so the only way of reducing this risk is to have them removed. I don't want children, so there is not that consideration for me, so I've proceeded with initiating this surgery. I saw the gynae-oncologist last month, and I'm seeing her again in November, but I'm on the list to have this as soon as they find me a slot. It's elective surgery, so there's a bit of a waiting list, but it could be sometime in the new year. I will post more here once I have some more information.

Next up, I've decided to have a double mastectomy. This is surgery to remove both my breasts entirely. Because I carry the BRCA1 mutation, I have a 70-90% chance of getting a new primary diagnosis of breast cancer. This is not a recurrence of my recent cancer (my recurrence chance is quite low due to the preventative measures I took and the drugs I'm on now), but a new initial diagnosis. As a BRCA1 gene carrier, the NHS will screen me by giving me an MRI every year until I am 50, then a mammogram every year after that, but the screening only detects a cancer once it has started to grow, which means I would have to go through treatment again if this happened. The only way to reduce the chance of getting a new breast cancer to 2% is to remove my breasts. And I really do not want to go through chemo again if I can help it! I'm meeting my original breast surgeon in November to talk about my options and timings for this. I'm keen to have my oophorectomy first and then deal with my breasts. Plus I have the small matter of finishing my masters, which I started again last week, so I'd quite like to time these operations around that if possible. Again, I'll post more here when I know what's what.

It's not great news, but I'm glad that I know. Imagine if I had not had the test! Knowledge is power, so I shall use this to make the right decision. In a way I'm kind of relieved, as it has confirmed to me that the cancer was nothing I caused myself, nor was it something I could have prevented. The hardest part about all of this is that my sisters and paternal cousins now have to go and take the test. They all have a 50% chance of carrying the gene mutation. It's easy for me, a 39-year-old woman with a life partner and no desire for children, to make decisions about having ovaries and breasts removed, but it's going to be harder for them to make decisions, as younger single women, if they carry the gene.

At first I was quite upset, as I felt as though I was really turning a corner and putting this whole episode behind me, and this was another spanner in the works. But now I'm resigned to it, and dealing with the practicalities of what it entails. Cancer really is the gift that keeps on giving! And having these surgeries will really make me feel as though I've done everything in my power to stop it from coming back, and give myself the best possible chance to live a long and happy life.

In other news, my hair is growing! Here's a comparison of now (left) and this time last year (right):

I had my 4 counselling sessions at the hospital, and I'm finished with that now. I did actually find them quite useful and have been implementing some of the things we discussed. I'm still getting fitter and losing my cancer weight (although my hip pain is preventing me from exercising as much as I would like). My toenails have all grown back (one of them ingrown, ouch!). I'm pretty much able to follow my uni readings and lectures, so I think my cognitive fog has lifted, which is great news for my studies. And I attended a 'sleep clinic' on Thursday this week, to try to help me with my sleeping problems. I learned some really useful tips, but they didn't stop me from waking up at 3.30am this morning and not getting back to sleep! Oh well, small steps.

I'm taking part in a few more studies, none which will help me directly, but all of which will help contribute to the bank of medical knowledge about cancer, and hopefully help someone in the future. Some of them are questionnaires, and most also require blood samples and regular updates. One of them is to test a new possible screening technique for ovarian cancer in BRCA mutation carriers, so I'll contribute to that until I have my ovaries removed. It feels good to be able to contribute to medical science and the furthering of measures to tackle cancer. The thought of preventing people in future from having to go through what I've been through is very motivating.

My friend Ben texted me to say he things BRCA stands for BRave CArmel, and I'll take that!

Surgery results, Carmel 1: Cancer 0.

My surgery was 10 days ago, and today I had to go back into hospital to get my pathology results. These are the results from the lab where they have analysed the two lymph nodes they removed from my armpit, and the remainder of the lump they removed. And happily, it's all good news. There was no cancer in my lymph nodes, which means I don't need to have any further surgery, and the remaining lump was also clear, which means that the chemo had properly killed all the cancer in my breast. I'm so relieved and happy, this is a huge milestone on my treatment journey.

 

Sticking two fingers up at cancer!

My surgeon, Miss L___, removed my dressings, which I've had on since surgery, so it was the first time I've actually seen both of the wounds. They look incredible, she's done a fabulous job. My armpit wound is a small nick about 2cm long, under the armpit, barely noticeable. She very cleverly made the incision for the lump by cutting a crescent shape around my nipple, and then tunnelling in to get the lump. This means I'll have no visible scar in my cleavage, and once it heals, it will be practically invisible. There is a lot of bruising and swelling at the moment, but I already love my post-surgery body, and when I look at myself in the mirror, I see a strong, beautiful woman who has been through so much over the past few months, and I'm so proud of her for getting this far.

Today we also discussed the next steps, as my treatment isn't over yet! In a couple of weeks I will get measured up for radiotherapy: they'll do a CT scan and I will get two little tattoos on my chest so that they can properly line up the lasers, and then, as long as my wounds heal well, I should start radiotherapy about a week after that. I will have 19 sessions in total, every weekday for almost a month, and then I will be finished with what they call 'active treatment'. The radiotherapy is really belts and braces, to mop up any stray cancer cells and reduce the risk of the cancer coming back. The side effects are not as severe as chemotherapy, but most people say that the significant one is fatigue, which can last up to a couple of months after radiotherapy is finished. I'm preparing myself for another few weeks of having a minimal social life. Luckily the nights are drawing in and the temperature is getting wintry, so I'll just curl up at home with some good books, podcasts, movies and hearty food.

I have been given some exercises, which I'm diligently doing three times a day, to regain as much movement as possible in my right arm. At the moment it's quite difficult to lift my arm up over my head, and I'm still avoiding lifting anything heavy, but I'm doing well. Tanai took a week off work after my surgery and we mooched about at home, chilling out and resting. It's actually been quite lovely to rest and recuperate properly after surgery; I realised that I didn't properly rest through chemo and probably pushed myself a little too hard. I go back to work next Thursday so I'm making the most of my final rest days. 

My daily exercises

So, all being well, I should be done with active treatment by the end of the year. I'm looking forward to bidding 2017 farewell, to be honest, and we already have some fun things planned for 2018. I will continue having Herceptin injections every 3 weeks until July next year, and I have just received my first prescription of Tamoxifen, the tablet I'll be on for the next 10 years. I've decided I'm not going to start taking it until after radiotherapy, as I am not keen on having both side effects at once. Today the clinical oncologist also talked about giving me Zoladex injections every month for at least the next two years. This is because I'm pre-menopausal, and my cancer is fed by oestrogen. What do your ovaries do? Produce oestrogen! So Zoladex suppresses your ovaries to reduce the risk of the cancer returning. And along with that there is another injection they want to give me every 6 months to prevent the cancer returning in my bones. I've decided to take some time to research these other options before signing up, as I've heard they can also have some pretty nasty side effects. I want to be certain that their efficacy and the benefits I will receive from them is worth the potential impact on my quality of life. So more on here when I know what I've decided! Until then, I shall continue to be pretty happy with today's news and celebrate this weekend with friends at the Lewes bonfire.

Surgery (and some cool research projects)

Yesterday was my surgery day, and it seems to have all gone well. Here's a little summary of the day. One of the things I was most dreading was having to fast all day before surgery, so we cooked up a delicious meal the night before. I've been getting creative with the contents of our weekly veg box, and this week we got some celeriac, so made a celeriac hash, with ham hock, mustard, gruyere and duck eggs. Absolutely delicious! I then permitted myself two pints of water at 5.50am on the morning of surgery, and that was it. We had to be at the Percival Potts ward at 7am, situated in the attic of one of the old St Bart's buildings. With pointed windows and a sloping roof, it felt more like a school dorm than a hospital wing! I had to give an extra urine sample so they could do a pregnancy test (hilarious!) and then was ushered into my own room, which was ridiculously overheated and the windows were painted shut. 

Then followed a stream of various people wanting various things. Firstly, a nurse to issue sexy compression socks for me to wear during surgery (to avoid blood clots), take my blood pressure, check allergies etc. Next up was a woman from the clinical trials unit at Queen Mary University, with detail of two programmes they were asking me to participate in. Regular readers will know of my desire to get involved in clinical trials and 'give back' to medical science and potentially help cancer patients in the future, so I was very interested. The first research programme is a tissue bank, and they are requesting that I agree to a piece of the tissue from my cancer being stored in this bank in order that they can conduct research on it, compare it with other cancer tissue, study its molecules and potentially see how it could respond to different drugs. Of course I complied and signed all the forms, totally happy to help out! The second programme is a huge NHS initiative run by Genomics England (a company owned by the UK Department of Health) and is called The 100,000 Genomes Project and is really pretty cool. This is a huge country-wide project and will definitely change the future of cancer treatment, so I was very keen to be involved. It will involve my whole genome being sequenced (Tanai was a bit jealous!) and it differs from usual research projects in that the data is not anonymised. They wanted to collect a blood sample and a sample of my cancer, and will use this to shape the personalised medicine of the future. In the not too distant future, people will not be routinely given the same old treatment as everyone else. No, their DNA will be sequenced and they will be given the appropriate treatment for their very specific needs. In order to be able to gather as much data as possible for this, they need to be able to access my entire medical history, and will continue to access it for the rest of my life, and beyond. It will be analysed by several global teams and compared with the 99,000 other genomes they choose to sequence. They will also contact me if any of the research on my sample unearths anything of interest or relevance to me. Of course I signed up straight away, and it feels great to be able to contribute to such a groundbreaking project.

My next visitor was the anaesthetist, a tall, skinny guy with an infectiously calm manner. He asked me various questions and explained what he would be doing later to get me ready for surgery. Not only would he administer my anaesthetic, but would also have to place a breathing tube down my throat in order for me to breathe during surgery. And after he left, my surgeon, Miss L___, and a registrar came to visit me. They asked me to explain in my own words what I thought was going to happen. They seemed content with my response and she then rather unceremoniously scribbled all over my chest just below my collarbone to remind her what to do later on, I suppose, so she didn't mix me up with any of the three other women she was operating on that day. We also discussed my allergy to the various dressings they use at the hospital, and sticking plasters. She said she would use a milder dressing, but we shall see if it works.

R = Right breast, WGWLE = Wire Guided Wide Local Excision, SNB = Sentinel Node Biopsy

Sexy compression socks

My first task for the day was to pop over to the West Wing and have a wire inserted into my breast so that the surgeon could later locate the cancer (I explained a bit about this here). When the ultrasound technician tried to find the remaining cancer she had trouble: apparently it has shrunk to less than half a centimetre! So instead of using the ultrasound to guide in the wire, I had to have it guided in while being compressed in a mammogram machine. Those of you who have had a mammogram will know how uncomfortable that was. This was because they decided to aim for the titanium clip which remains in my breast from the biopsy, rather than aiming for a tiny tumour remnant. They know that this clip was placed in the original tumour, so if they aim for that, they should catch what's left of the cancer. I suppose it's quite difficult for the surgeon to operate, when she can't see the cancer (it doesn't look any different from my normal body from the inside, I suppose). So she operates with all my ultrasound and x-ray photos all around her, guiding her as to where it is likely to be located in my breast. The wire helps with that, as she can just remove it and a bunch of tissue around the base of it, and hope she got it all. I wonder if in future someone will invent glasses that surgeons can wear that will give them the ability to see cancer.

As an aside, while I was having my ultrasound, the nurse in the room just happened to be the same nurse who was there in February when I had my first biopsies, F___. Back then, before I had even received my diagnosis, she held my hand through 9 painful biopsies, and was so kind and thoughtful, I have not forgotten it. I was so glad to have the chance to tell her how much that had meant to me, and thank her for her kindness.

So with a wire hanging out of my boob (no, really!) I went back to my room to wait. And I waited, hungrily, for hours. I was 3rd out of the 4 women having surgery that day, but I think they scheduled the most complicated op first. Finally, at 3.30pm, I made my way to the theatre. My lovely anaesthetist was there, and we had a delightful chat about hiking on the Isle of Skye while I slowly drifted off to sleep. And 3 hours later, I woke up! It really is quite remarkable, medical science. 

The other part of the op, which I mentioned before, was the removal of some lymph nodes. Having been injected with radioactive dye the day before, they apparently used a geiger counter to find where the radioactivity was collecting, and that, combined with the blue dye, helped them locate the sentinel nodes to remove. I just find that so astonishing, what an incredible technique.

Coming round from the anaesthetic wasn't too much fun, but after a bit of anti-nausea medication and some sips of water (finally!) I felt vaguely human again, so they wheeled me back to my room, and to the welcoming arms of a rather worried-looking Tanai. I then proceeded to gingerly eat some of the leftovers from the day before (I'm sure I'm the only person to have broken their surgery fast with celeriac hash and duck eggs) and soon felt much more stable. Miss L____ came to check in on me, informed me that she'd removed two lymph nodes (as far as she could tell) and that it all seemed to have gone well. I'm to keep my dressings on until I go and see her on 3 November, when I'll also receive my pathology reports. So that's when I'll find out if the surgery was successful in removing all of the cancer, and if my lymph nodes are cancer-free. Fingers crossed I won't have to have any further surgery.

I then got dressed and we made our way downstairs. All along when preparing for surgery, everyone we've spoken to has insisted that we get a cab home, but it was such a charming, cool evening and I was feeling strong, so we defied advice and walked home through Smithfields market. It's only an 8-minute walk and we made it home fine. After some pumpkin soup which I'd made the day before I collapsed, exhausted into bed and slept very soundly.

So that's it! Surgery is ticked off the list (hopefully for good). I feel fine today, a little sore but I haven't had to have pain relief yet, and I still have some movement in my right arm. I keep having to remember not to pick things up with my right hand (which is tough as I'm right handed), and Tanai has taken the week off work to help me out. We managed a little afternoon walk today in the autumn sunshine and now I'm resting on the sofa. I'm wearing very comfortable clothes, a soft post-surgery bra (which I also have to sleep in) and I have a fabulous pillow which my friend Dee sent me, which hooks over my right shoulder and prevents my arm from chafing my armpit wound. I can shower as normal as the dressings are all waterproof. I'm sure it will get sore over the coming days, especially when I start to do my exercises (which I've been given in order to maintain movement in my right arm) but hopefully all will be well. If I have any problems I can just head straight over to St Bart's and they'll sort things out. So now I just have to rest and recuperate, and spend some time relaxing, reading books, listening to podcasts and catching up on some movies.

My fabulous arm pillow

This afternoon's walk through the St Bart's courtyard

Final pre-op prep

I'm heading in for my surgery tomorrow so just thought I'd update you on the final things that have happened this week. Since my pre-op check-up I have seen the cardio oncologist again, for the results of my various heart tests. She was very reassuring and said all the test results seem fine. She suspects I have what is called Ventricular Ectopy, where my heart decides to give an extra beat every now and again, for a short burst, which explains my chest pain and the fact that I'm feeling my heart beating quite aggressively. She said it's nothing to worry about in the short term, that I'm fine to proceed with surgery, but that if it's still happening in a couple of months I should head back in to see her. She did, however, point out that my blood results show I'm anaemic, so she has advised that I receive a blood transfusion after my surgery rather than simply being left to build my bloods back up on my own.

I also received a call this week from the clinic to say my bloods needed doing again, so it appears that they are not as good as they could be. The nurse told me my magnesium and potassium are low, or something like that (I didn't take notes) and she took three more vials from me to do further tests. Due to 6 months of sustained chemotherapy, my veins are not as good as they used to be, and have a tendency to collapse when someone tries to put a needle in them. She tried her hardest but had to use a vein that was quite deep, and now I have a huge bruise on my left arm! I asked the google what I could do about collapsed veins, thinking there might be some things I could do to help them regain their strength (such as drinking lots of water doing exercises etc) but all I unearthed were helpful websites urging me to stop doing drugs! It seems as though that's the main cause of collapsed veins, and the advice is all very admonishing, so I retreated. Anyway, hopefully they got what they needed at the hospital and my bloods are getting better.

Finally, this morning I had to go into the nuclear medicine department again so that they could inject me with some radioactivity. The nurse was fabulous and explained how it all works, before injecting it into my boob near the nipple. It only stung a little and now I'm back home. After the injection, she took a marker pen, circled the area she had injected and put a little arrow towards it with 'INJ' next to it! I suspect that is not the last time I will be written on with marker pen. Oh well, if it helps the surgeons I really don't mind. So tomorrow they will apparently use a Geiger counter to see where the radioactivity has gathered, and this will help them see where my primary lymph nodes are, to aid them in taking them out. It's all so fascinating.

At the nuclear medicine dept this morning. Far too early for Tanai!

On the way home, we stopped at St John's bakery and bought two donuts. They make delicious fresh donuts every day and fill them with different creams and custards. Tanai got one with honey and brandy cream, and I got one with a delicious spiced custard. This has become a bit of a tradition now, buying St John's donuts at each stage of my treatment. It's so lovely to have it to look forward to.

Today's yummy donuts

This weekend I also went to my first gig at the Roundhouse since the day before I received my prognosis back in March (we went to see Sampha and the very next day got all the test results). There was an all-day festival featuring some really funky music, including the Hot 8 Brass Band, who were great. I managed a whole glass of wine and we stayed out until 9pm! Crazy. After 6 months of being very boring and primarily staying home, it felt like a real treat.

I finally have a social life again

We also spent Sunday ferociously batch cooking, so that we have a freezer full of food in readiness. Although Tanai does love cooking, it's likely I will have mobility issues for a while in my right arm, so might not be able to cook for a while. Rather than have him cook every single night, I thought it would be nice to stock up on some yummy meals in our freezer. The flat still smells delicious!

Chef Cardona

We also did some DIY and installed a new ceiling light in the kitchen to brighten up a dark corner. We received a lesson from my dad over video whatsapp and then turned off the electric at the mains and wired in the light. A bit nervewracking but it worked!

Lovely new ceiling lamp

I have finally ditched the headscarves as I now have enough hair to look plausibly like another short-haired person, and I feel great. It's a little windy round my ears though, I wasn't prepared for the cold! But I'm enjoying how low-maintenance it is. Someone at work said 'big earrings and lippy' so I've taken that on board.

Rocking the short hair

I'll update you all after the op! Fingers crossed it all goes well.