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!

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!

Preparing for surgery

My surgery has been confirmed for Tuesday 24 October, so for the last couple of weeks I've been attending various appointments to prepare for the op. I saw my oncologist again on 2 October: my standard post-chemo check-up. She was really happy with my progress and I don't have to see her again until 4 December! It feels so strange, after seeing the oncology team every 3 weeks for the last 6 months, to have such a huge gap before seeing them next. As my treatment progresses my schedule of appointments will change, and once I'm done with radiotherapy I will drop down to seeing my oncologist and surgeon every 3 months, then every 6 months, and eventually I will only have to have annual check-ups. But I'm getting ahead of myself...

On 4 October I had my first Herceptin injection. Regular readers will know that this is a monoclonal antibody (I explained how they work here) which I have had intravenously during my last 4 rounds of chemo, along with Docetaxel and Pertuzumab. Its actual name is Trastuzumab but Herceptin is the brand name and widely used. Herceptin blocks the growth factor HER2 from helping the cancer cells to grow, and so the cancer cells eventually die. It has been shown to be hugely effective at preventing cancer from returning, so I have to continue receiving a dose of it every 3 weeks for a year in total. It took about an hour to receive it through an IV but now it's administered via a large needle in the thigh for a couple of minutes. Although this is much more convenient it bloody stings! My friend Jana came with me and distracted me and held my hand while the needle went in.

Next up was my pre-op assessment on 10 October, at my regular Breast Clinic in the West Wing of St Bart's. First they weighed and measured me again, so that they can calculate how much anaesthetic I need, then they took my blood pressure, took some blood for testing, and swabbed my nose, mouth and groin to check for staphyloccocus. I explained that I had actually had an outbreak of staphyloccocus aureous on my skin recently, but was on a course of antibiotics to get rid of it. It's highly infectious apparently, and can have major developments if not treated properly, so they have to control its spread in hospitals. Apparently if the tests come back positive, I will have to be last on the operating table that day, so they can scrub thoroughly after me.

Then I had to answer a whole heap of questions from a nurse, including whether I'd had general anaesthetic before, when I last had bronchitis, whether my ankles had swollen recently, and loads of other seemingly non-related questions. I had a general anaesthetic when I was a child for a multiple tooth extraction, I haven't had bronchitis since 2014 and yes, my ankles are swelling every day at the moment, in case you're interested. They are particularly concerned about some of the questions we're investigating to do with my heart, so they sent me off for another ECG and a doctor came to listen to my heart. Once again, the ECG seemed fine, but as I have an appointment with the cardio-oncologist next week, they're going to hold final judgement until then. Fingers crossed I'll be good to go for surgery on 24 October.

The patterns my heart makes

The nurse explained a little about what would happen which I will outline here for those of you interested. Firstly, the day before surgery, on Monday 23 October, I have to visit the nuclear medicine department for a Sentinel Node Scan. They'll inject some tracer near my breast and they track its progress in the lymph system by taking pictures over the course of 3 hours using a gamma camera. So basically I have to lie extremely still in a huge nuclear camera machine for the best part of half a day. Fun times. This will then guide the surgeon who will be removing my sentinel lymph node as well as the rest of my cancerous lump.

Then on the morning of 24 October I am not allowed to eat anything. Those of you who know how hangry I can get can appreciate that this is one of the things I'm most worried about. No food from midnight onwards and no water from 6am onwards. I'm going to get cranky! I also have to remove all nail varnish, and I'm not allowed to moisturise that morning or use an oil-based shower gel. I have to arrive at the hospital at 7am when I'll be greeted by the team and meet my anaesthetist. At this stage I don't know what time my surgery will be, as they decide on the day what order they will do everyone in.

So essentially the procedure is this. I am having two surgeries in one. Firstly, a Wire-Guided Wide Local Excision. This is the name of the procedure for removing the remainder of my cancerous lump. In the morning, they will use an ultrasound machine to guide a wire into my breast and they will leave the end of it right at the base of the remaining cancer. I will then have to go about with a wire hanging out of my boob until I head into surgery! This is to guide the surgeon, Miss L___, as she removes the cancer including a margin of healthy tissue so that we can be happy it's all gone. She will go down to the end of the wire and remove that along with the cancer. She will also take out the titanium clip which they put in there right back in February when they were doing my original biopsies.

And secondly, I'm having a Sentinel Lymph Node Biopsy. This is to check that the cancer has not spread into other parts of my body. The Lymph nodes are small, bean-shaped glands throughout the body. They are part of the lymph system, which carries fluid, nutrients and waste material between the body tissues and the bloodstream, and is an important part of the immune system. Cancer co-opts the lymph system in order to travel around the body and settle elsewhere, which is why it's possible to have Breast Cancer in your lungs, brain, and other organs. If my cancer has spread, it would do so via the lymph nodes in my armpit, so the surgeon is going to remove the first couple of glands and send them off to the lab, to see if they can find traces of cancer in there. The way they do this is quite funny. While I'm under anaesthetic, they inject my boob with blue dye, and then see where it goes. The first couple of nodes it appears in are the ones they will remove. They will take out 1-5 nodes (the average is 2.2). Apparently my breast can remain blue for up to 18 months after surgery! I think that Smurf Boob will be my new pirate name. Maybe I should audition for the next Avatar movie!

Once they're done, as long as there have been no complications, I can leave hospital the same day, and don't have to stay overnight. The lump and nodes will go off to a lab, and I will get the results 2 weeks later. If they have managed to take enough margin round the lump and my nodes are clear of cancer, I will not have to have any further surgery, and can go on to have radiotherapy a few weeks later. If the margins are not clear, or if there's cancer in the nodes, they will have to operate further.

I have been given an information sheet from Breast Cancer Care containing exercises I must do each day to ensure I get my full motion back in my right arm. There is a risk of Lymphodema, which is a permanent swelling of the arm due to there not being enough lymph nodes to fully drain from the arm and upper body. Also, I will not be able to have any blood pressure tests or blood taken from my right arm for the rest of my life! Let's hope my left arm can do all of that for me in future.

So now I'm feeling quite prepared for the surgery. I will take 2 weeks off work afterwards to recover, and hopefully will be fine to return after that.

And to further examine my heart, yesterday I had what's called a 'stress test' on my heart. This was quite a tricky test, I had to sit on a kind of exercise bike, but one where I was laying back at 45 degrees so they could put heart monitors around my chest and back. They set the 'bike' on a course which got increasingly difficult, and I had to keep pedalling in order to push my heart rate up. The tricky part was that they had to tilt the machine to the left in order to get the ultrasound wand and take photos of my heart. Riding a bike until your heart rate reaches 150, while tilted to the left so you feel as though you're going to fall off is quite challenging! But we made it in the end and they got all the pictures and videos they needed. I will see the cardio-oncologist on Tuesday for the results.

And my other hospital visit this week was on Wednesday, when I went back to the Royal London for the results of the biopsy on the skin tag I had removed a while ago. All good, I don't have skin cancer, hurrah! It was just a bundle of blood vessels so nothing to worry about.

One more week until surgery! It's a busy week at work but I'll be resting lots in the evenings and continuing to build strength and energy to help me see it through.

Pre-treatment fun

In a few short days treatment will begin and no doubt my day to day life will change significantly. Knowing that I will soon embark on a period of at least 6 months where my ability to enjoy certain things I love (food, travel, the energy to do loads) will decrease, has made me more fully appreciate some of the fun of the last few weeks. With my prognosis imminent, our long-planned weekend in Heidelberg for Tanai's birthday, for example, took on a new importance. We flew to Frankfurt airport for the last weekend in March, and my aunt and cousin picked us up. My mum's brother, Paul, his wife Milena, and their two children Liam and Antonia have lived in Heidelberg for many years, and I have visited them often, but this was Tanai's first trip there. It's such a beautiful town, and we were lucky enough to have gorgeously sunny Spring weather for the whole weekend. We were spoilt rotten by my family, who cooked us delicious food, entertained us and ensured we had a thoroughly wonderful time. Paul played tour guide and we visited Heidelberg's famous castle, sampled some of the local beer, and of course pork, potatoes and sauerkraut. For Tanai's birthday we had a delicious meal in a Bulgarian restaurant, where the boys had whole spears of meat and Milena and I enjoyed Bulgarian ratatouille. And we cycled to Schwetzingen palace, where there are some stunning gardens and the cherry blossoms were in bloom. Milena and Antonia treated us to a fascinating night at the theatre, where we saw a contemporary dance piece and ended up having bubbles served on the stage by upside-down dancers! The sunny weather definitely helped me feel rejuvenated, and it is always great to get away from London for a long weekend. We walked and cycled past allotments, fields and the bustle of Spring was around us. It was also great to think about things other than cancer for a while! I'm sure I'll love similar distractions over the coming months.

Our hosts, beneath the cherry blossoms

With Tanai in the wonderful cherry blossom garden

Paul and Tanai overlooking the castle and the river

Liam and Tanai and the spears of meat!

Being served by upside-down dancers

Riding in the laneways of Heidelberg

The spring weather has also been lovely during the days at work, as we have a deck on our fourth floor and can now sit out there during lunchtime, and even for some after-work drinks. This week was bitter-sweet for me as one of my team members was leaving. Only two days before we'd had team karaoke and we'd belted out classics together, and now I was saying goodbye. Phil is my favourite office DJ, he makes me laugh every day and I will really miss him.

On the roof of the office

Belting out Rocket Man with Phil

Team Awesome karaoke

Following my recent hair-loss worries, yesterday two of my girlfriends took me shopping to the fabric stores on Berwick Street in Soho, and we bought some fabric for me to fashion into hair wraps. We also watched some videos on YouTube and I practiced tying some fabulous African-inspired hair pieces over my head. It was a lovely day hanging out with them, and now I'm a lot less worried about losing my hair, as I feel a whole new style coming on! I'm even considering not bothering with a wig, and just going with scarves the whole time. I'm keen to buy even more brightly-coloured fabric and making some fashion statements. But at least now I am prepared for the inevitable.

So much fabric!

With my fabulous shopping companions

Bus fun!

First attempt at a hair scarf (youtube vid in background)

Another thing I'm concerned about is losing my tastebuds during chemo, and not being able to taste the delicious food my friends cook! So today we went to my friend Taey's house for lunch, and she made amazing slow-cooked short ribs which she'd marinated the night before. They were so tasty, Tanai could not stop talking about the food all the way home. I love Taey's cooking and the thought of waiting another 6 months before I can taste it again makes me sad, but it will taste all the sweeter after I'm done with the chemo. It was also lovely to see how little Marou is growing, he is so happy and chilled out, a lovely little boy. Not sure how much I'll be able to hang out with my friends' kids over the coming months either, as I'll have a low immune system and they are basically human germ-factories, so I'm getting my fix now.

Storytime

Tomorrow I will probably find out when my first chemo is and then it's action stations. Until then, I'm having a relaxing evening with a dark chocolate Lindt bunny and a book on post-colonialism.