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.

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.

Studies and courses

Here's another update from me, to let you know how I've been getting on. I'm doing well, generally, and continuing my road to recovery. I'm feeling stronger every day, and have more energy too. My hair is growing back, which is great, although it has a distinct wave to it (it was completely straight before) and it's much darker than my old hair, but I'm taking that in my stride (I've always wanted curly hair!).

A few weeks ago I took part in a study at a London university which was examining cognitive function and psychological health in women with a breast cancer diagnosis. I spent 3 hours in a room in the basement answering questions and attempting difficult tasks on a computer while wearing an EEG cap to measure the activity in my brain. It was quite fascinating and I'm dying to know what they found over the course of the study. They were researching 60 women with a diagnosis and a control group of other women of a similar age and education level. Although I feel as though my cognitive abilities are definitely coming back (no more 'chemo brain'!) I'm still finding that I get frustrated with myself more easily when I get things wrong, or struggle to find my words. I suspect that is what they found when they analysed my brain. When I got things wrong that I felt I ought to have got right, I became so frustrated with myself that it affected my ability to get the next few things right too. I definitely came away feeling as though I should be a little less harsh on myself.

Wearing my EEG cap like a muppet

I've also been doing a 7-week course at the new Maggie's Centre in the grounds of St Bart's hospital, called 'Where Now?'. Designed for people who have finished their active treatment for cancer, it's perfect timing for me to be getting help and advice on getting back into the swing of things and coping with the after effects of treatment. There are 12 of us in the group, of mixed ages and cancer types (I'm the youngest) and we meet every Wednesday from 12-3pm. We start in the hospital gym and do an hour's worth of circuit training, with the wonderful physio, Claus, ensuring that our activity is tailored to our abilities. Then we have an hour's talk on a different topic each week (the first week was nutrition, the second exercise, and coming up are stress management and other useful topics) and then we have lunch together. So far I'm finding it really useful, and the Maggie's building is such a calm, beautiful haven. Anyone can go in there at any time, make a cup of tea, and talk to some of the specialist staff there. 

Inside Maggie's

I'm doing plenty of exercise and making sure I do lots of active minutes each day. Regular exercise which increases the heart rate significantly (160 minutes a week) has been proven to reduce the changes of the cancer coming back by 40%. This is significant enough for me to be fully prioritising working out! Over treatment I put on 10kg (a stone and a half in old money) and I've already lost a third of this already. It's slow going but I'm making sure I'm still feeding my body plenty of nutrients to aid its recovery. I'm eating lots of leafy veg and eating oily fish to help my bones. I've bought a 'Nutri Ninja' and I've been making delicious smoothies, including many green ones. Getting all my vitamins and minerals!

A beetroot smoothie

I've also had continuing appointments, so although I'm done with active treatment, I'm still a regular at St Bart's. I have a few Herceptin injections left and I'm on the Zoladex indefinitely. I try to ensure as many of my appointments are on a Wednesday as possible, and I keep my fingers crossed that the clinics are all running to time. Sometimes I have to wait hours for my medicines to arrive from the pharmacy. I kind of didn't mind the wait when I was having chemo, but now I'm only getting injections I'm keen to be in and out as quickly as possible. Everyone's so lovely there, though, and most of the nurses know me by now, so there is quite a jovial atmosphere and I'm always happy to see familiar faces. Over the last couple of weeks I've also had my regular echocardiogram test, to ensure my heart is still working well despite the Herceptin; a DEXA bone scan to see how my bone density is now that I'm being forced into the menopause; my regular oncology appointment; and I've also had to go to the dentist to get some work done (it never rains but it pours!). I've also had a follow-up with my GP too, it's one thing after another! But I feel as though I'm in safe hands, and it's nice to be easing myself out of treatment rather than disappearing suddenly. My GP has referred me to a sleep clinic as I'm struggling with my sleep at the moment, and this is affecting my daily life. I'm not having any problems falling asleep at the beginning of the night, but I'm waking up 4-5 times each night and I'm struggling to get back to sleep. Hopefully they will be able to help a bit.

NHS chic

During treatment I couldn't go swimming because my neutrophils were low and I was at high risk of sepsis, but now my immune system is doing much better I've started to go swimming in the mornings again. I go to a lovely pool in Kentish Town, near where I work. It's a Grade II listed building and was a public baths back in the Victorian era. Built in 1898 it was where working class people (who didn't have washing facilities at home) used to come and do their laundry, and wash themselves. Now it's been completely restored and I enjoy a tranquil swim under the sunlight-filled roof before work.

One of the other risks my surgery brought about was that of lymphoedema, which is a permanent swelling of the arm and hand on your surgery side. Basically our bodies have a lymphatic system which is constantly moving lymphatic fluid around all the  time, and as I had some lymph nodes removed from under my right armpit during surgery, my lymphatic system is now compromised, so the risk of localised fluid retention and tissue swelling in my right arm has increased. I only had 2 nodes removed, in order for them to check whether or not the cancer had spread, and as they were fine, I didn't have any more removed (some people have them all removed, putting them at a much higher risk), so I didn't think it was likely. I have been diligently doing the exercises given to me post-surgery in order to keep my lymph system going as well as possible. However, last weekend was a very hot weekend by the UK's standards (highs of 29 degrees!) and unfortunately on Sunday my right hand started to swell.

Fat right hand

The swelling remained for a few days so I called my Breast Care Nurse (everyone has a dedicated nurse they can call at any time) and she advised me to pop into the clinic to see her. She measured the circumference of my arm and hand at various points between my knuckle and my upper arm, and at all the points, my right arm was a centimetre wider! But they're still not 100% sure it's lymphoedema, so she's referred me to the specialist clinic. She's also ordered me a compression sleeve and glove for my right arm and hand, which I should wear to encourage the circulation of my lymph fluid. Strangely I'm finding this quite upsetting, even though I suppose in the grand scheme of things it's nothing! But I can see it all the time and it's a constant reminder of the changes my body has been going through. Fingers crossed it's just the heat and it will go down a bit when the weather cools.

[A few days later]
The hand swelling has gone down quite a lot! It's not quite the same as the left hand but it's no longer quite so fat and sore. Hurrah!

I'd better sign off for now, as this is getting very long. Will do another update soon.

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.

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.

It never rains but it pours

Those of you who have known me for a while will know that I have a small reddish-purply skin tag on my left forearm, which has been there for about 6-8 years. It first appeared when I'd been living in Australia for a few years and has been sitting there on my forearm ever since. Early on I got it checked out by my local GP in Sydney and they advised that it was nothing to worry about, but that I might want to get it removed one day if it got irritating, as sometimes they can catch on clothing and they bleed profusely. Of course I never got round to getting it sorted out as there were always things higher up my list when I visited my GP (including a pesky lump in my right breast!).

Fast forward a few years and things are now critical. Over the last few weeks it has been growing steadily, from the size of a lentil to about the size of a kidney bean, and it has become more red and engorged. After my last chemo it started to bleed a lot and it's been impossible to deal with ever since. I have been covering it up with large plasters, to which of course I'm allergic, so now I also have a huge ugly-looking rash all over my forearm. Last week I went to see my GP about it, as the thought of keeping it under plasters until chemo is finished was making me feel upset, and I also wanted to check that there's nothing I should worry about. She took a photo of it on her phone and sent it to a dermatologist friend of hers who advised that I should get it looked at.

So this morning we found ourselves in the Dermatology unit at the Royal London Hospital in Whitechapel, a sister hospital of St Bart's, to finally get it seen to. (Yes, Nick, finally! You can stop nagging me about it.) We saw a lovely doctor who asked me a whole bunch of questions (How long did you live in Australia? Is there a history of skin cancer in your family? etc) and then took a look at everything. As soon as she saw it she immediately declared that she thought it was benign but that I should get it removed immediately and sent to the lab for testing. So that's what happened! After all these years it took a couple of minutes for a nurse to scrape and burn it off (after a healthy dose of local anaesthetic) and pop it in a tube to send to the lab. She was a lovely nurse and kept making jokes about how I was losing my best friend, that I'd been attached to for so many years. (Friend? Nemesis, more like!) So now I will have a small crater in my arm, kind of like a cigarette burn. Much preferable to what was there before. And I shall go back in 5 weeks for the results and to get a check up.

The Royal London Hospital

While the doctor was examining me she asked me about the obvious issues she could see on my mouth and my body. Basically I have sores all round my mouth and red spots all over my body. These have only appeared in the last couple of weeks, since my 7th round of chemo, and I just assumed they were because I was immunocompromised and that they would go away once I recovered from chemo. She agreed, but still said we could do something about them. She has taken swabs and sent those to the lab too, and given me some cream and tablets for them. She suspects mouth herpes (ah chemo, the gift that keeps on giving!) and some kind of bacteria forming the welts on my skin. It's all pretty gross, I know, but these are the realities of being immunocompromised: my body is susceptible to everything and I can't fight off any infection. So now I'm at home, very happy that the growth on my arm has been removed, once again delighted at how thorough the NHS are being about my health. I'm also hoping that I'm not in the business of collecting different types of cancer! We shall see on 11 October when I get the results.

I wanted to also add something to my last post. When I was having my heart echo test, the nurse left the sound on, so I could actually hear my own heart beating. It sounded different depending on where she placed the wand from the machine. I don't think I've ever heard my own heart beating before, so that was pretty cool!

More tests and trials

So last week I went to see the cardio-oncologist to get the results of my various heart tests. I was scheduled to have an echo test in the morning and then see the cardio-oncologist in the afternoon. I received a call from a research nurse asking me if I'd be interested in participating in a trial, to which I agreed (I'm always keen to contribute to medical science, as I am benefiting from it so much right now!). They were conducting a trial to see what type of heart test is the best type to use with cancer patients, so they wanted me to undergo a different type of test immediately before my echo test, and then they would compare the results. The trial test was an MRI heart test, where I had to lie in an MRI machine and hold my breath several times while the machine did its thing. Then I had my echo as expected, and then saw the cardio-oncologist. All the tests so far (including the heart monitor) show nothing out of the ordinary, so they are puzzled about my symptoms. They are going to investigate further, fitting me with a heart monitor for a whole week once I've had my next chemo, and they want me to come back and ride an exercise bike while hooked up to a heart monitor. Once again, I love the NHS for being so thorough, and it's good to hear that it doesn't seem to be cause for alarm.

Then today I had my pre-surgery tests: a mammogram, an ultrasound and an MRI. I'll discuss the results with my surgeon on 22 September when we'll plan my surgery. I've described these tests before so won't go into too much detail, except to remark on something. For the MRI I had to have a cannula inserted into the inside of my elbow so that they could inject the contrast dye during the testing, and they always flush a cannula with saline once it's in, just to test it. And the weird thing is, as soon as they inject the saline into my vein, I can taste it in my mouth! Isn't that strange? Fun fact.

So although I won't get the results from these tests for a while, the doctor who did my ultrasound told me the dimensions of my remaining cancerous lump, and it's 15% of its original size! And I still have one final chemo to go. So while the main purpose of chemo is to catch any stray cancer cells that have spread to other parts of the body, it's also shrunk my tumour to the point where surgery will be much less invasive than it would have been back in February.

Tanai drew the tumour sizes from my three ultrasounds, the original one, the half-way one and today's:

So tiny, I can no longer feel it. Here's to getting rid of it completely.

Heart scans and more tests

This week I had my 7th and penultimate chemo, and I'm now at home over a lovely sunny bank holiday weekend, recovering and trying to rest. My aunt Siobhan came down from Tunbridge Wells to join me in the hospital and she treated me to a relaxing hand and foot massage when we got back to the flat afterwards. I felt thoroughly pampered! It was so lovely to have a natter with her and catch up. An unexpected positive side effect of chemo. The other, not-so-positive side effects are kicking in now and I'm being gentle with myself, giving myself time to get well again. It's hard sometimes to look out of the window at the blue skies, hear the carefree laughter of passers by enjoying their summer long weekend, and not feel a little cheated by it all. But I know that this too shall pass, and I will have the opportunity to enjoy sunny long weekends again in the future. In the meantime I should rest, relax, heal and not be too hard on myself.

Since moving onto the new drug regime (which I've had for the last 3 rounds) I've been experiencing some heart palpitations which intensify about a week after treatment. I mentioned this to my oncologist on Monday so he has referred me to a cardio-oncologist to get my heart looked at. Although I have a Heart Echo test every 3 months to check that the Herceptin isn't having too strong an effect on my heart; as the nurse said at my last test, 'that's the plumbing, not the electrics'! So on Thursday morning I went back to St Bart's to have a 24-hour heart monitor attached. This consisted of three large circular patches, stuck to my chest and either side of my ribcage, which were each attached to some wires which then fed into a little box which clipped to my waistband. I had to wear it for 24 hours underneath my clothes and carry on as usual. I then popped back on Friday morning to take the kit back. Unfortunately (or fortunately, depending on how you look at it!) I didn't experience any major palpitations while I was wearing the kit. So we'll see what the results are. I have to head back into hospital on Tuesday afternoon for two different kinds of heart tests and to see the cardio-oncologist to assess the results. Once again, it's wonderful that the NHS are being so thorough at making sure I am okay: I feel as though I'm in safe hands.

Wearing my heart monitor

Today is quite a significant date, as it's exactly 6 months since Tanai and I were in a doctor's room and first heard the words 'you have a breast cancer'. I feel as though it's a milestone. Psychologically, perhaps in an attempt to contain what I'm going through, I have been thinking of this whole thing as 'pressing the pause button on life for a year'. I know it's much more complicated than that, but I want to ensure I don't feel bad about 'opting out' of things for a year while I go through treatment. It may take longer than a year, but at the moment that's how I'm looking at it. And I'm on track. So today is the half-way mark. From now on, I'm nearer to recovery than I am to diagnosis, and that feels good.

Only one more chemo to go! I know that a couple of months ago I never thought I'd get to this stage, so I feel very happy about this.

Siobhan enjoying the frittata and salad I made for our hospital picnic

Outside King George V building heading into chemo

Home to a relaxing foot massage

Collecting hair inspiration for when my hair starts to grow back

Potential trial participation

A little update from me just before I head into my 7th chemo session on Wednesday. All's well, my follow-up chest x-ray was all clear, there seem to be no concerns from my ECG and I'm ready to go for the penultimate round. It feels good to be close to the end of chemo. I've been invited to participate in a clinical trial so I thought I'd share the information with you as it sounds really interesting. Basically, there were some studies carried out into the beneficial effect of taking aspirin in those who had heart disease, and some of the data suggested that aspirin appeared to reduce the number of people who developed cancer, and if people did develop cancer, it appeared to be less likely to spread. So a huge clinical trial has been set up to test these theories, comprised of people who have been treated for cancer of the stomach, prostate, bowel, oesophagus and breast. They are aiming to recruit 3,100 patients who have been treated for early stage breast cancer, which is why they have approached me.

The trial is called the Add-Aspirin trial, and has already been running for over a year. It's funded by Cancer Research UK, the UK Department of Health and the Medical Research Council Clinical Trials Unit at UCL (University College London). They wish to test the long-term effects on the potential of cancer returning of taking a dose of aspirin every day. I will first of all have to take part in a 'run-in' period where I take a low dose of aspirin every day for 8 weeks. If all is fine, I will proceed to the trial. One third of participants will receive a regular dose of aspirin, one third will receive a low dose of aspirin, and one third will receive a placebo. I will not know which strand I'm in. They want me to take a tablet every day for 5 years. I will receive regular check-ups, blood tests, mammograms and other tests, as well as a questionnaire each year, because aspirin has also been alleged to protect against age-related cognitive impairment. (Hilarious! Can it help me remember my keys every day?)

One of the things I've been considering recently is how I can 'give back' after I complete treatment. I feel really positive about the opportunity to participate in something which could make a real difference to cancer treatment in the future, and potentially help save people's lives. Although I will be unlikely to personally benefit from this trial, there's a good chance that the data gained from the trial will benefit people in future. Plus, samples of my blood and a sample from my cancer (when they get round to removing it!) will be donated for research, which is pretty cool. I also like that I get an 8-week run to check that my body would have no adverse effects from taking aspirin. Plus, it's aspirin! People have been taking this for years. It's not as though it's some new drug that has only been tested on mice. So I think it's a pretty good thing to do. I'll let you know if I get on the trial.

Chemo 6, and the rollercoaster continues

This week was my 6th chemo session, leaving me with only 2 rounds left to go. It's somewhat strange as the majority of cancer patients I'm in touch with only have 6 chemo sessions in total, so here's where a lot of people get off the chemo train. But I get 2 extra doses of weedkiller so I'm not quite done yet. It's been an eventful few days, reminding me that this journey is never going to run smooth, but I'm doing okay, convalescing at home this weekend and waiting for the worst of the side effects to kick in.

On Monday I saw the oncologist as usual before my chemo session, to talk through how I am, and prepare anything different from the last time. I've seen three different oncologists from the team since my diagnosis, and for the last couple of rounds I've seen the head honcho guy, Prof. S___. He leads the team and is very distinguished in his field, having written heaps of papers and run lots of studies. He's a lovely chap with a friendly manner and a no-nonsense approach to what I'm going through. We discussed my little trip to A&E and I went through my notebook with all my new questions since last time (I write them down over the intervening weeks and go through them in my oncology session). We checked my bloods, and thanks to the GCSF injections my neutrophils were a healthy 5, so that was good. He then mentioned that he wasn't hugely happy about proceeding with chemo on Wednesday until I'd seen a dentist and could confirm 100% that I didn't have an abscess on my tooth. The risk is too great, apparently. So I left his office on Monday afternoon, having not registered with a dentist since returning from Australia, with a pretty hard deadline for getting my teeth checked out.

A cursory google and a few phonecalls later and I was booked into a dental clinic near the Barbican, near where I live, for the next morning. I had to shift some meetings around at work but I was so determined to avoid anything delaying my chemo schedule I became a little single-minded about it. Luckily, I hit the dentist jackpot. Not only is my new dentist lovely and efficient, she also happens to work in an NHS hospital as well as her private practice, and sees lots of cancer patients with teeth problems so completely knows her stuff. She had a thorough grounding of the impacts of chemo and radiotherapy on teeth, the key risks and things to look out for, and exactly what I should do in my situation. X-rays showed that I was abscess-free (yay!) so chemo could go ahead, but we have also come up with a plan for things we need to do between chemo and radiotherapy to ensure my teeth are impacted as little as possible by the effects of the rads. She has also prescribed me with high-fluoride toothpaste to protect my teeth from the effects of my cancer treatment, and she has given me a little blunt syringe so that I can get mouthwash into the niggling cracks around my wisdom tooth, to avoid an infection delaying chemo. I left feeling very happy and with a plan for October/November to ensure my teeth are also looked after through this.

Wednesday went ahead as planned, with my wonderful friend Caroline joining me on the chemo ward for a picnic lunch and a natter. I had the smiley nurses G___ and G___ again. Unfortunately, this was the first time they didn't get my cannula into a vein on the first go. It took 4 goes to find a vein as my poor little veins were collapsing, which was quite distressing (they ended up having to call the head nurse to do it!). I've been lucky so far and have had good veins, avoiding getting a PICC line fitted, but this time was tough, and I really hope my veins hold up to having 2 more rounds before I'm done. My hands are quite bruised now!

Selfie on the ward for chemo 6

As per last time I had quite a bit of energy (somewhat steroid-induced) for the couple of days following chemo, so I did some work and tried to keep busy. Then the rollercoaster came along again! I received a call on Thursday evening from my GP saying that UCLH had sent over a report following my visit to A&E and that they'd seen something a little worrying on my chest X-ray, so could I come in to see them. Friday morning I rock up at the GP and we go over how I am. She checked my breathing, asked me loads of questions about my heart, chest pain, the little flutter I've started to feel since shifting onto this new drug cocktail. She suspects that if the 'cluster' on the X-ray was the beginning of an infection, the antibiotics which I received at UCLH probably got rid of it, but she asked me to get another chest X-ray just in case. She also referred me for an ECG test (electrocardiogram) to check my heart is working as it should be. So I ended up spending most of Friday wandering round various hospitals of London (St Bart's and UCLH, because unfortunately the tests couldn't be done in the same hospital!) getting tests done. The results will be sent to my GP in the next few days, but hopefully it's not anything to worry about. To be honest, the main takeaway I had from all of this was a realisation of my GP's role in all of this. Each time I visit the oncology team, a letter gets typed up and sent to my GP, and of course they received the A&E report. Knowing that they are taking note of what's happening to me, and even called me when they thought something was awry, gives me great comfort as I go through this. Another example of our amazing NHS!

Display at UCLH of early anatomical drawings

This time around I have been given the GCSF injections in advance, so Tanai is administering a shot each day in my belly for the 3 days following chemo. Hopefully this should ensure that my neutrophils don't drop below the required levels and I can stick to my timeline. I've had my MRI booked in for early September, just before my last chemo, so that the surgeon has some up-to-date imagery to work from when planning my surgery, and I will meet with them before my last chemo. The light at the end of the chemo tunnel is finally visible, and I'm so ready to move onto the next stage of treatment: surgery. Chemo sucks, and I hope I never have to go through it again after all of this.

I now have my own sharps disposal unit for the used GCSF needles!

On Wednesday Tanai will go to Portugal, on the holiday we were supposed to be enjoying together, for his friend's wedding. I'll be sad to be without him for a week, and of course gutted that I miss out on a holiday and on meeting lots of his friends, but we have already started to plan some fun trips for next year, and soon we will have other holidays in the diary to look forward to. In the meantime, I have a host of friends who will hopefully swing by and see me during my week flying solo during treatment. Let's hope there's not another A&E visit next weekend!

A&E & Neutropenia

So, I guess it had to happen at some stage, and you could tell from my last post that I suspected the time would come soon. Yesterday we spent the whole day in A&E at UCLH (University College London Hospital, my nearest hospital with an A&E department, as St Bart's doesn't have an A&E).

I have been experiencing bone pain with the Docetaxel, including pain in my teeth and jaw, but over the last few days the pain has become concentrated on my lower left wisdom tooth, and my cheek and mouth has become swollen in that area. By Saturday evening the pain was intense, so I called the chemo hotline. The chemo hotline is a phone number I can call if I'm experiencing anything in a list of symptoms and I get through immediately to a nurse on my chemo ward. The number is attended 24/7 and they do encourage you to ring no matter how trivial you think the call to be, as they can help you decide what to do. Generally, the answer is 'Go to A&E!' but at least you feel as though it's legit.

I called again on Sunday morning and although the nurse was quite keen that I see a dentist to check out what was wrong, she was more concerned about the possibility of me being neutropenic, so advised I get myself down to A&E. Tanai and I headed over to Euston Square station and UCLH, and with my chemo platinum card I was fast-tracked through the people who had arrived at A&E on foot.

They did general observations, blood pressure, took a blood and urine sample, took jaw and chest x-rays and gave me my own room. I saw a doctor who advised that the x-rays came up okay, and I didn't seem to have an infection, but that I was indeed neutropenic. My neutrophils were 0.5 ('normal' is between 2 and 7, anything less than 1 is neutropenic) so they considered keeping me hospital in for observation. Meanwhile they gave me morphine for the pain and some intravenous antibiotics in case my tooth had an infection. They sent one of their oncologists to see me, a lovely woman called Dr O___, and she asked me lots of questions. She decided to give me my first G-CSF injection (granulocyte colony stimulating factor), which stimulates the production of white blood cells in the bone marrow. I received that and a 2-week course of antibiotics to take at home, and was discharged.

In my room at UCLH

Today I popped into St Bart's to see the team, and they have given me some codeine for the tooth pain (I do still need to see a dentist) and 5 more G-CSF injections for me to take at home, in order to try to build up my neutrophils so I can still have my next chemo on schedule on 2 August. So tonight, Tanai became a different kind of Dr to the one he's used to being, and injected me with my G-CSF. He was a bit nervous, and so was I! You have to pinch a bit of your belly and jab it sharply into the flesh, and then push the liquid in (it doesn't go in a vein). Neither of us really knew what we were doing but we googled it and then just went for it! But now we know how it's done, the next few should be relatively easy. I will now get these injections each time I have chemo, in order to boost my neuts for the next round.

Dr Cardona in the house!

As I'm neutropenic they have also advised me to be cautious and not expose myself to infection, so I'm working from home this week and trying to get as much sleep as possible, to allow my body the best chance to recover. I keep taking my temperature regularly and if it goes above 37.5 I will call the hotline. It's touch and go whether I will need to go back to A&E this week, but hopefully these injections and the antibiotics will do their job. I'm a little nervous that the tooth problem is significant, as it's generally not advised to have a tooth extracted during chemo (due to the risk of infection), but we'll see what the dentist says (if I ever manage to register with one and get an appointment!). All in all, not the most fun weekend I've had, but at least it wasn't too dramatic.

CT scan

This morning I was back at St Bart's for a CT scan of my chest and pelvis, in the imaging department. I've been here a few times: for my MRI scan, my bone scan and now my CT scan. I'm becoming quite a regular! I arrived this morning and they were running about an hour and a half behind schedule. I mention this because for all my many appointments, tests and treatment, this is the first time things haven't run to time. Quite a feat by our wonderful NHS. As I was waiting in the foyer I looked around the atrium at the lovely view. The outside of the building features the original stonework, but inside the King George V wing it's all light, airy and modern, and there are even trees in the atrium! It's a wonderful building.

When they finally got round to me, I was seen by another nurse, G___, who put in yet another cannula, which you would have thought I'd be used to by now, but unfortunately I'm not. He tried my left arm first, but it didn't work, so we had to do the right arm. My arms are now very sore. After he'd tested it with a vial of saline I was dispatched to the waiting room and told to drink three glasses of water. The patient after me was an older lady, with a woolly hat on, and she went into the treatment room. Her companion, a white-haired old lady of at least 70, promptly sat next to me and engaged me in conversation. I have noticed thus far that there's an unwritten rule about showing courtesy to patients, not asking too many questions, and not inviting yourself into their personal space if they are not willing. Well this lady didn't seem to care about any of that! Her opening line was 'So where've you got it, then? Your breast?'. Crikey, talk about cutting to the chase, lady! Actually I quite liked her frankness, and we had a great conversation about what's going on, what in her mind is the best way to tackle things ('a positive mindset') and how ridiculous it is that 'they're trying to get us all to drink so much water'. She clearly thought this was absurd. When the nurse came to get me for my scan, she said 'Good luck missy, have a great life'. What a fabulous old battler, she really put a smile on my face.

The CT scan uses a 'donut'-like machine, similar to the one used for my bone scan. I had to lie down on a flat bed which moved to push me in and out of a donut which scanned the relevant parts of my body. The technician, B___, pushed some dye into my veins through the cannula just before this happened, which the scanner then picks up. This was a high pressure dye, and just before she commenced, she warned me about the side effects. She said 'You might get a metallic taste in your mouth, your body will suddenly feel flushed and warm from your fingers to your toes, and you will feel as though you're peeing, but don't worry, you're not peeing'. Within three seconds, all of these side effects kicked in! It was so strange (especially the part where I thought I'd wet my pants).

The machine then quickly scanned from my neck to my pelvis and then I was good to go. I will get these results, and the results of my bone scan, when I see Dr S___, my oncologist, next Friday.

After my scan I had booked a contact lens check up and a sight test, which is a little overdue. I was chatting to the optometrist about how the chemo is drying my eyes out and I feel as though the contact lenses are getting a bit scratchy towards the afternoon each day. We have decided to switch my lenses from monthlies to dailies, which should help with this, but also reduce the chance of infection, as I'll throw the lenses away at the end of each day, so won't be putting the same ones back in my eyes each day. This will give me peace of mind, as I'm much more susceptible to infections while I'm on chemo. She has also advised that I wear my glasses at least a couple of days a week, to give my eyes some rest.

Now I'm back home and cooking a fish pie for dinner. (I still have my mashed potato cravings so I'm working my way through all the recipes I know that feature mashed potato!)

Dem bones

Today I had a full-body bone scan, in the Nuclear Medicine department at St Bart's. I had to be there at 11am in order for them to inject some radioactive tracer into my arm. Then I had to leave for a while, so that the radioactivity could do its thing, and come back to the hospital for my scan at 2pm.

In the interim, I had lunch with my friend Eva, who has just come back from holidaying in Argentina, and she joined me at my wig consultation. The NHS supply free and subsidised wigs for cancer patients, and there is a lovely woman called Vicky who has a shop in the ground floor of the West Wing of St Bart's, where she fits wigs for people, as well as headscarves, prosthetics, and other services. I had hoped it would be a fun trying-on session but unfortunately Vicky just supplied us with a catalogue, filled with rather un-cool looking chavvy ladies, with names like 'Shonella', and we had to choose from the pictures. There was only one style that I really liked, so I've ordered that in three colours, and I will get to try them on next week. But at least it was a fun excuse to have lunch with Eva! As I mentioned before, I'm still on the fence as to whether or not I'd like to wear a wig. I think I'd rather just rock the headscarf look as I'm not that interested in pretending I have hair, but as the NHS provide this service for free, I figured I'd take a look at what the options are, and it might be nice to have a wig as a back-up for those days when I really don't want to stand out.

I had to drink lots of water over lunch, to flush the radioactivity round my system. I'm really not quite sure how this works, when the radioactivity goes into your veins and the water goes into your mouth, but hey, that's medical science. (Edit: I just googled this and apparently it is to flush out any excess radioactivity that doesn't go into my bones.) Then I had to lay down on this machine:

They moved those two flat plates as close to my body as possible and then s.l.o.w.l.y moved them all the way down my body. Apparently, if the cancer has spread to any part of my bones, the tracer will either gather there or miss it out completely, so they will be able to see from the scan if there are any areas where there is either too much or too little tracer.

As the nuclear technologist operating the machine, R___, reminded me, the machine isn't radioactive, I am! Apparently I am not allowed hug a pregnant person for 48 hours. Stay away, pregnant people!

So now the scan is done I have to wait for the test results, which will go through to my oncologist before I see her next. I also have a CT scan next week, and will get even more blood tests to see how my first round of chemo has affected my blood.

A little update on my general health. It's now Day 9 of my first chemo cycle, and I'm feeling really good. I had two days back at work before my day off today, and although I was still a little spacey on the first day, by yesterday I was almost completely back to my usual self. Much more energetic, coordinated and with my cognitive abilities intact! I'm still very tired in the evenings and have been getting afternoon headaches, but nothing to be worried about. Today I walked the farthest I have walked since chemo. Walking is one of my favourite things, and definitely the key to my good mental health. I love walking, and often choose to walk the hour to work, along London's canals, listening to audiobooks or podcasts, and enjoying every element of it. Since chemo I have had very little energy so walking has been crossed off the list, much to my dismay. I have tried some little local walks but am fatigued after only 15 minutes. Today I had to walk into uni to hand in a deferral form for one of my assessments (I have an essay due on Monday which Chemo Brain will not allow me to do!), which at my usual pace is a 40-minute round trip. I walked at a slower pace than usual, and stopped on two benches each way, but I made it there and back with no dramas. Hurrah! Also, the pauses were pleasant. I walk through a lovely old building to uni called Waterhouse Square, a magnificent old red brick facade with leaded windows and slate roofs, and while I paused on a bench I noticed a plaque I'd never seen before: Charles Dickens, novelist, lived here. The things you notice when you stop for a while.

The buildings in Waterhouse Square

Charles Dickens lived here

My other bench view on my journey to uni: the old trees in Lincoln's Inn Fields

Changing directions

When they say cancer is a rollercoaster, they are really not kidding. This week was definitely testament to that. On Thursday I finally met my oncologist, Dr S___. I instantly loved her, and I know that we are going to get on; she's my kind of lady. An older, Indian woman with a whole heap of experience, she has worked all over the world, run medical trials, presented at conferences and is a total cancer rockstar. And she has a no-nonsense, pragmatic attitude which suits me down to the ground. She talked me through some options but on Thursday they were still awaiting the results of the HER2 test which could potentially make a significant difference to my treatment plan.

As an aside, each time I visit anyone for a consultation at St Bart's, they write up the consultation outcomes and send them to my GP. I get a letter in the mail (yes, snailmail) which is a 'cc' of the letter which goes to my GP. The last one, from my surgeon, Miss L___, had contained a worrying line. It said 'I think cosmetically she would benefit from neoadjuvant chemotherapy'. Cosmetically? This is not high on my list of concerns! I care more about getting the best treatment and ridding my body of cancer than what my cleavage will look like post-surgery! Neoadjuvant means to receive treatment such as chemo before surgery rather than afterwards (which is called 'adjuvant'). I had googled this (of course) and read that chemo has the same effectiveness whether it's given before or after surgery, but it can make a difference to the surgical outcomes (for example, make the tumour smaller so less of my boob is removed).

Anyway, when I mentioned to Dr S___ that I really wasn't concerned about any 'cosmetic' outcomes she totally stopped in her tracks. Apparently if I am HER2 negative, I could have surgery and not even need chemo at all! This stunned me. My surgeon was making assumptions about me rather than giving me options. In the same way that she assumed I would want fertility treatment, she was assuming that I was concerned about what my cleavage looks like. (In case you haven't guessed yet, this made me kind of angry.) To have made a decision about my treatment which meant that I could have unnecessary chemo was astounding to me.

Anyway, we could not make the decision until the HER2 results were in, so Dr S___ immediately stopped my consultation. She said she would chase the results but that I should consider that I may be going into surgery next week rather than chemo, as she predicted I would be HER2 negative (apparently my tumour is so receptive to oestrogen and it's rare that these types of cancers are also HER2 positive).

I then went into work rather light on my feet for the rest of the day! There is a chance I might not need chemo after all! Gosh, what a glimmer of hope.

Sadly, the glimmer was shortlived. She called around 6pm and said that I am HER2 positive and so should definitely have chemo first. Oh, and could I come back at 9.30 the next morning! So Tanai and I were back at St Bart's early this morning to get the full picture. Apparently only 10% of cancers are both HER2 positive and receptive to oestrogen, so I guess I'm rather rare. Not sure how I feel about that as I'd rather be in the statistically predictable group, but there it is. So this morning Dr S___ gave me the full low-down on chemo and I signed a consent form so that they can progress with my treatment.

She explained some of the main side effects, and some of the regular tests I'll be getting over the coming months, and why. Also, in true project manager style, I'd written down lots of questions in my blue notebook, each with a space left for the answers, so we went through those too. Tanai and I have been doing quite a bit of research: each time I get a letter with the results of the consultation we google all the acronyms and write down any questions we have, so that we can go through them in our next visit. I imagine this will become quite a routine during my treatment. So here is a bit of a summary.

I will need to have a few more tests to check certain parts of my body that can be affected by the chemo. So I have to have an 'echo' test which is to check my heart, because the drugs can impact on my heart. They will keep checking this every 3 months and if my 'ejection fraction' goes down by more than 10% they will either reduce the dosage or pause/stop treatment. I also need a CT scan and a full body bone scan. The drugs I will be on can affect my bones, my liver, my kidneys, my blood, in rare cases chemo can cause cancer (ah, the irony!), nerve damage and, to top it all, it will probably bring on early menopause. Thank goodness it will also nuke my breast cancer, otherwise this is a ridiculous thing to sign up to by choice.

The more 'regular' side effects are that I will feel nauseous (Dr S___ prescribed me some kick-arse anti-nausea medication), tired, I will be more susceptible to catching viruses, I will probably lose my hair and I will probably lose my sense of taste (this makes me very sad, but thankfully it's only during treatment, not forever). For my birthday, the wonderful Rosser family in Sydney bought Tanai and I 'high tea' at the Ritz, so I've decided to save this as my treat when I'm all done with chemo and get my taste buds back. It's great to have something wonderful like that to look forward to.

When I told her that I was planning to continue going to work all the way through my treatment she was very pleased. She said she encourages all her patients to continue working, and she said if I feel as though I have the energy, I should continue to cycle into work too! She advised that if I do want to take the tube, I should avoid the rush hour, as it's likely I will catch any germs going around.

So, once we were all done, I trotted off to get my bloods done, got my appointments booked in for my CT and bone scans, and headed into work.

All in all, I'm quite glad we're still doing it this way round. Having chemo first does mean that the surgery is likely to be less invasive, as the tumour will be smaller. Also it means I get to have Pertuzumab, which has only been licenced since December 2016 and has fantastic effects. It increases the effectiveness of the other drugs and dramatically reduces the chances of the cancer returning. But this drug is only available to patients having chemo before surgery, not afterwards, so I'm very lucky to be having this.

Tomorrow I'm going shopping with a couple of girlfriends to buy some headscarves, and we are going to work out how to tie them somewhat stylishly by studying youtube videos, as I really want to be prepared for this. Should be fun!