General update

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

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

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

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

Celebrating another milestone with St John's donuts

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

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

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

The finished blanket!

Cancer survivorship course and lymphedema clinic

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

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

New earrings!

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

Joining the class

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

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

Chemo delays

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

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

 Becky's amazing granola

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

Wonderful medicinal papaya

Medicinal fruits

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

Administering my GCSF injection

My ever-expanding diagnosis list in medical lingo

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

Chemo begins (again!)

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

Fearless girls

Receiving my infusion

Crafting during chemo

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

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

The Bart's quad and fountain

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

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

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

Pathology results and a plan

Bit of an update this one, brace yourselves. Last week I saw someone from my surgeon's team at the Royal London Hospital for my post-op pathology results (my surgeon was on holiday so I saw someone new). I received great news, they didn't find anything dodgy in any of the organs, glands and other stuff they removed during my major surgery on 2 April. So the tubo-ovarian cancer that they found was limited to just a 1.7mm sized tumour in only one of my fallopian tubes, which they had already removed at the end of February. This is good news on a number of levels. It means they got it all, so there's none left to remove or nuke, but the surgery was not in vain either. As I carry the BRCA1 mutation, this increases the likelihood of it coming back. But now they've removed pretty much everything it could possibly come back in, so I'm giving myself the best possible chance of remaining cancer-free after all of this and getting on with my life. The surgeon said that in their MDM (Multi-Disciplinary Meeting) they had argued about whether or not I even needed to have chemotherapy! Medicine is not an exact science, they just have to go on studies of people with similar cancer situations to mine; their own experience; and a bit of instinct. And as they were completely divided as a group, patient opinion also forms a part of it. Tanai and I have been reading studies about ovarian cancer, and in instances where the cancer was contained as mine was, patients who have the complete surgery I had, followed by a course of chemotherapy, have the best outcomes. For me it's a no-brainer -- if I didn't have chemo and it came back in the future, I would never forgive myself for not giving myself the best possible chance. So we opted 'yes' for chemo.

So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.

Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.

So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!

I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.

I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.

Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.

Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!

Lessons and revelations from chemotherapy

Today marks the official end of my chemotherapy treatment. It's been three weeks since my last dose, but unlike before, there is no top-up today of the poison which is also saving my life. My body can continue to recover and rebuild, and I'm busy regaining strength and energy in time for my surgery on 24 October.

So long, farewell, chemo. It's been... well, shit, to be honest, and I'm bloody glad to see the back of it! Now, I know I've been putting on a brave face (literally, in the case of drawing on eyebrows), but I feel as though I should at least write one candid post about the effects and lessons of my six months of chemotherapy. You'll laugh (I'm kidding myself if I think 'with' me, you'll laugh 'at' me), you'll cry, you'll wince, and you'll hope you never have to go through it yourself. And I hope you don't, I really do, although if you do, I'll hold your hand every step of the way. It's shit, yes, but I survived it, and thousands do, but we develop a sick sense of humour and lose all dignity in the process.

One of the words most commonly used to describe chemo by people who have been through it themselves is 'doable'. As in: 'it's awful, but it's doable'. This has always intrigued me, what does 'doable' even mean? It's such an insipid, unassuming word. It has no sense of the horror of chemo, but it's factually correct. I suppose chemo is indeed 'doable', but hiding behind that word is a whole storage locker of pain and indignity. Strangely enough, I will probably find myself using that word to describe it in future. I did it, it's doable, I'm still here to tell the tale.

I've learned a few lessons over the last six months, valuable lessons about myself and my relationships, and I've experienced things I never want to experience again. So here are the fruits of my chemo education.

A little caveat: everyone's response to chemo is completely different, regardless of their regimen. I've learnt this through many online conversations in my support groups and with women I've been put in touch with, so there's no rulebook (and there appears to be no logic either) but here is my honest and frank experience.

As I've mentioned before, having chemo is like spraying your entire garden with bog-standard weed killer because some pesky weeds killed your rosebush. You don't know how far the weed seeds or roots may have spread, but you don't want the weeds to kill anything else in your wonderful garden, so you take no chances, and you blast the whole thing with strong weed killer. It's not very targeted, but it's certainly effective.

Side effects of chemotherapy:

So let's start with the obvious: hair loss. I've been rocking the headscarves for a few months, so it's clear I've lost the hair on my head. But hey, I also learned that hair is not just an aesthetic thing, it's also actually kind of useful. Eyelashes and eyebrows have functions. Not only does my face look weird without them, but I keep getting things in my eyes these days, and they are constantly watering. The loss of my nose hair is super annoying, as I now have a permanent drip from the end of my nose. It drips on my notebook, or into my dinner, totally unannounced. And, TMI, hair 'down there' is also useful. Why on earth people pay to have it removed in its entirety is beyond me. I want it back please! Sadly, the leg hair is persistent, no silver lining there.

Then there's the fatigue. It's very hard to describe but I've never experienced anything like it before. And it has different stages. Usually for the first few days after I've had chemo, I have immense fatigue, I feel tired all the time and usually don't leave the house for at least a few days. When I do try to go for little walks I can barely make it round the block before I have to sit down on a bench. And I have a fog behind the eyes, and need to nap lots (gotta love naps!). I don't have the strength to open the coffee pot in the morning, I'm dizzy and often can't walk without holding onto the walls. I take baths instead of showers because I can't trust myself to have enough balance to stand in the shower. I slowly regain energy and strength as the days go by, but never to anything remotely like even 50% of my 'usual' energy. I practice energy conservation (lifts not stairs) and have to make tough decisions about what I spend my energy on (ie if I go into work, that uses up all that day's energy. Usually a walk around a gallery exhibition floors me, etc). Even having a conversation is exhausting. For someone who is used to running around doing a million things a day, the fatigue has probably been the side effect that has impacted my life more than any other. And I don't have the language to describe what it feels like ('fatigue' just doesn't cut it). I find myself saying 'I'm exhausted' to people and they just nod and say 'mmmm' and I know that they have absolutely NO IDEA what I'm talking about. 

The dehydration is intense. When I first started chemo, there were women in my support groups sharing tips on how to make water taste interesting. I laughed them off, thinking, 'I love water! I drink loads of it already, I'll be fine'. Not so. When you have to drink litres and litres of it each day it starts to get incredibly boring. No, more than that, I'm bloody sick of it! It makes me gag. So I had to try everything to make it taste interesting: diluted fresh orange juice, elderflower cordial, a plethora of interesting teas. And my skin is completely dry all the time, I've never moisturised so much in all my life. I've invested in a stash of 'Moo Goo' products, which are lovely and completely natural, free of nasties such as parabens etc. I'm obsessively moisturising my hands a million times a day, and my lip balm addiction has intensified. I put a spoonful of coconut oil in my bath. I'm applying nail oil to my nails and cuticles a few times a week, because, oh yes, my nails are getting dry and brittle, and are slowly peeling off.

On that note, I lost my first toenail last week. Yes! They're just coming right off. Fun times.

Everything takes a million years to heal. I have some mosquito bites on my leg which have been there for almost three months. If I accidentally cut myself, my blood just doesn't clot properly, and the wound takes weeks and weeks to heal. I put this down partly to my low neutrophils and white blood cells, as my body doesn't really have the mechanism to heal itself well. Interestingly, I was warned that this would make me more susceptible to catching infections, but ironically my own worst enemy has been my own body. The main things that have knocked me down are things which regularly exist happily and silently on my own body but have been able to make me ill because my immunity is compromised (such as the staphylococcus aureus I got all over my skin). If I so much as walk down the street I get blisters on the soles of my feet, and woe betide my hands if I don't wear rubber gloves while washing up.

My digestive system has been shot to pieces, every aspect of it. My tastebuds have changed, my eating habits affected, my tolerance to spices severely reduced and my cravings for beige food dramatically increased. And don't get me started on the other end of the digestive system. Let's just say I have 7 different types of laxatives in my medical cupboard now. Yes, seven.

Changed eating habits and lack of energy have led me to put on 6 kilos over chemo. I feel sluggish and most of my clothes no longer fit me. I'm looking forward to getting fit and healthy again. I am, however, grateful that I've been able to keep eating and feeding my body to give it the best possible chance to maintain energy and nutrition. Many people get such sore mouths and heaps of mouth ulcers during chemo so they lose weight due to lack of ability to eat. I'm very happy that it's been the other way round for me.

I get random nosebleeds all the time and there's nothing I can do about them. They won't clot, my nose remains dry and sore and I can't predict when they will happen. A couple of times they've happened in pretty embarrassing situations but I've always got tissues on me so I've escaped any major dramas.

Chemo brain is real. Yes, the cognitive impairment has been strange for me, especially as someone who prides herself on being articulate and decisive. At its worst it has been crippling: forgetting the words for things, forgetting how to use the oven, struggling to string a sentence together. I've developed coping mechanisms and workarounds, but this is one they say can linger, and I'm not looking forward to that.

Menopausal symptoms, the main one being hot flushes, have given me a new-found empathy for women going through the menopause. Hot flushes just come upon you suddenly, your entire body temperature soars and you're sweating all over, then a few minutes later you're shivering with cold. As this is happening regularly through the night as well as the daytime you can imagine how this is affecting my sleep. And when your body is trying to heal itself, sleep is something it really needs.

Then there are the side effects from the drugs they give you to prevent the chemo side effects. I kid you not! Each round I had to take steroids to make sure my organs kept working and to combat nausea. These prevented me from sleeping and gave me severe 'roid rage', turning me into a monster on day 4 or 5 of every cycle! The GCSF injections which Tanai administered daily after chemo were meant to encourage my bone marrow to produce white blood cells, thus preventing me from becoming neutropenic. Well these had the delightful knock-on effect of making all my bones ache like hell. A good dose of Epsom salts in the bath eased the pain.

There are more, but these are the 'highlights'. And I suspect that each one alone would be manageable. Many of them are not in themselves debilitating. But combined all together, when you're attempting to still function in society, they have been extremely challenging. I hope I've managed to demystify some of this experience without grossing you out too much.

On the plus side, the chemo has been busy NUKING THE CANCER, yeah. Let's face it that's the primary plus factor. Also most (but sadly not all) of the side effects are temporary. My hair will grow back (perhaps curly, who knows?), the fatigue will ease, I'll lose the chemo weight. But now I will continue to take Herceptin for a year (in injections every three weeks) and Tamoxifen for 10 years (a little tablet each morning), which bring their own side effects. There is also the likelihood that my treatment will bring on early menopause, eliciting a whole heap of other wonderful side effects. What treats I have in store!

There are other positives to this experience, though. There are so many organisations out there geared up to help. For example, Macmillan sent me a small plastic card for my wallet which requests that the person I show it to allows me to use their toilet in an emergency because of my cancer treatment. Useful when out and about! And Transport For London sent me a badge which passive-aggressively asks people to give up their seat for me.


And here are some of the things I've learned while going through chemo:

1) I can walk to my local city-centre Waitrose in tracksuit pants, no undies, flip flops, a baggy t-shirt and a headscarf and shop amongst the 'suits' at 5pm and not lose a shred of dignity.

2) It's actually possible to have both constipation and diarrhoea at the same time. It's like some kind of hideous pooping miracle!

3) Tanai loves me even when I am bald, have tonnes of coldsores, chronic constipation and I'm cranky from the steroids. The only way is up!

4) If I get to the end of the day and the only thing I've achieved is to stay alive, that's not a day wasted. Yes, I've definitely learned the art of slowing down and putting less pressure on myself. Long may it last.

I have to give a huge shout-out to those wonderful people in my life who have helped me get through this tough first phase of treatment. To the amazing friends who have sent or given me thoughtful cards and gifts after researching chemo side effects: nail oil, hand cream, headscarves, ginger sweets and tea, the biggest bucket of Epsom salts I've ever seen, a chilly towel all the way from Australia, homemade cheesy bikkies, gorgeous earrings to help me rock the hairless look, and so much more. To everyone who has popped over to our little flat to visit, some driving almost 6 hours for the privilege, others coming all the way from Australia, many bringing food and lolz. To everyone who has texted me jokes, messaged me support, reminded me they're thinking of me. These things have meant a great deal when you feel as isolated as I have felt at times. To my patient, supportive, caring colleagues, who put up with my regular TMI, have sanitised the heck out of the office, and who go and work in another part of the building when they've got a slightly sore throat. Our daily interactions at work have most definitely kept me sane through this. To the four incredible people who accompanied me to rounds of chemo and gave Tanai a break: Martin, Dom, Caroline and Siobhan. That really was above and beyond and I will be forever grateful. To mum for batch cooking and filling my freezer with delicious food, and dad for sending Tanai presents and reminding him he's awesome. To my uncles Paul and Paddy and their families, for providing Tanai and I with weekend respite before and during chemo. Getting away from the eye of the chemo storm was hugely important for our mental wellbeing, so thank you. I won't go on, partly because there is much more treatment to come, and I'm sure I'll be reaching out for further help and support, or grateful when it's offered unasked.

I've already had a couple of 'helpful' naysayers question my decision to proceed with this treatment, especially as I'm known for my holistic approach to health and my love of natural supplements and therapies. Aside from the fact that it's 100% my own decision how I proceed with tackling cancer, there's also the not so small matter of science. Eating kale does not get rid of cancer. Chemo does. End of.

If you've made it to the end of this post, well done! It was epic, I know, but the last six months have also been epic, and, like childbirth, I suspect that if I don't write about the experience, I'll forget the horror of it all. Onwards and upwards to the next stage of kicking cancer's arse!

Final chemo

A week ago I had my final session of chemotherapy. Hurrah! Almost 6 months after my first session I am finally done with what is largely accepted to be the worst part of this experience. Although I still have lots of treatment to come, this feels like a hugely significant milestone, and I am understandably very happy to see the back of it!

Hooked up for the final time!

Of course I'm not really fully finished with chemo until it's out of my system and I'm through the side effects, but I'm feeling a little better each day already, and psychologically it feels brilliant to know that I won't be knocked down again in a couple of weeks, just as I'm starting to feel well again. I'm starting to look forward to having some more energy, to getting fit again after 6 months of relative inactivity, and to venture out into the social world once more.

The side effects haven't been too bad this time, perhaps it's a case of positive mind over matter, and I've been working from home over the last week. Each day I've tried to venture out at least once, for a little walk, to keep as active as possible, and I'm trying to sleep as well as I can. I've been eating nutritious, healthy food and taking Epsom salt baths most days to ease the bone pain.

My favourite bakery, Konditor and Cook, ran a competition this week on their instagram account, where they asked 'who do you think deserves a cake and why?'. I commented that my amazing husband Tanai deserved a cake for looking after me during chemo, and that it would be a great way to celebrate having the final round this week. Well, to my surprise, they agreed! So this weekend we picked up a delicious hazelnut and chocolate cake from their Waterloo bakery.

A lovely way to celebrate the end of 6 challenging months.

I'm preparing a long, candid and hopefully funny post about my chemo experiences, which I'll publish later this week. Next up for me is an appointment this Friday with my surgeon, when hopefully I'll get a date for my surgery and a plan for what will happen. They are going to remove what's left of the tumour and also take out a 'sentinel' lymph node from my armpit to check that the cancer hasn't made it into my lymph nodes (this is how the cancer spreads to other parts of the body). Hopefully it shouldn't be too invasive an operation, and I will recover in a couple of weeks. After that I will have a course of radiotherapy, and then some more tests to check that all the cancer has gone. I'm also going back to the chemo ward every three weeks to have a Herceptin injection in my leg, for the next year. In the meantime I'm taking tentative steps into the world of 'having a life' again, by starting a painting class this evening. I used to love painting when I was at school, but haven't really done any since then, so I'm going to see where my inspiration leads me and learn a new skill. Looking forward to it!

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!

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

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!

How do chemo drugs work?

I've been doing some research into the drugs I'm having administered in the hospital, and how they're each working to attack the cancer cells in my body. Having chemotherapy is a bit like finding some weeds under a beautiful rose bush, and deciding to spray hardcore weedkiller on the entire garden, just in case the seeds from these weeds have blown anywhere else. In other words, it's not always hugely targeted, but it can be very effective. Cancer cells (as with many other healthy cells) grow by going through what is called the cell cycle, in which a cell divides into two identical cells with their own set of DNA. Chemotherapy drugs interfere with various parts of this cycle so that the cells can't divide or repair themselves if damaged. Normal, non-cancerous cells have a better ability to repair themselves. There are over 20 different combinations of chemo drugs and the exact combo is down to the type of cancer you have, the most up to date research available and the experience and opinion of your oncology team. My cancer is ER+ (Oestrogen receptor positive), HER2+ (Human Epidermal Growth Factor Receptor 2 positive) and Progesterone + so I've been given the following regime of drugs.

The first four cycles I had were called AC, or Doxorubicin (A) and Cyclophosphomide (C). These are both first generation chemotherapy drugs, which mean they've been used for many years and are fairly standard. Doxorubicin (aka 'the red devil') is the red one I was given by hand in the syringe, and it's a type of chemo drug called an anthracycline. It slows or stops the growth of cancer cells by blocking an enzyme which they need to divide and grow. Cyclophosphomide belongs to a group of drugs called alkylating agents. It works by sticking to one of the cancer's DNA strands, which controls everything the cancer cell does. The cell cannot then divide into two new cells.

As we have seen, my 4 x AC cycles have been pretty effective, although I'm glad to see the back of the side effects on those drugs!

My next four cycles are TPH, or Taxotere (the brand name for Docetaxel), Pertuzumab (also called Perjeta) and Herceptin (the brand name for Trastuzumab). I've already had one cycle of this combo and will have three more. All of these are administered via a drip into the hand. The only one of these which is an actual chemotherapy drug is Docetaxel, which is nicknamed 'tax'. It's a third generation chemo drug, which means it's more effective than the first generation of chemo drugs, but brings with it an increased risk of infection. Docetaxel works by disrupting the microtubular network in cells, which is essential for cell division and other normal cellular functions. Docetaxel interferes with the function of microtubules, resulting in inactive microtubule bundles, causing cells to die.

Herceptin and Pertuzumab are actually not chemo drugs, they are monoclonal antibodies, but they are administered with chemo drugs because trials have shown that the effectiveness of both chemo drugs and monoclonal antibodies is dramatically increased if they are given together. Pertuzumab is a relatively recent drug to be licenced for use (December 2016) and at the moment it's only available if you have neo-adjuvant chemotherapy (ie chemo before rather than after surgery). Herceptin is also a relatively new drug and apparently there's a 2008 film called Living Proof starring Harry Connick Jr about Dr. Slamon's discovery of Herceptin. (Fun fact!) I will continue to receive Herceptin for a year through injections every 3 weeks, as well as these four cycles intravenously.

Both of these drugs are immune targeted therapies, which work by targeting specific proteins (receptors) on the surface of cells. Some cancers have too much of the protein HER2 on the surface of their cells (hence are HER2+). The extra HER2 receptors stimulate the cancer cells to divide and grow. Pertuzumab and Herceptin work by locking onto HER2 proteins. Each drug locks on to a different part of the protein. This blocks the receptors and stops the cells dividing and growing.

Here's a handy drawing from a book I have which shows how Herceptin works.

Also, here is a great animated video which really simply and clearly explains how monoclonal antibodies work.

It's incredible what advances in medical technology are being made every day, and I also know women who are taking part in medical trials for even more new drugs, each one potentially more effective than the last.

So I'm currently recouperating from the first TPH cycle which I had last week, and although there are lots of nasty side-effects from the AC which I'm thankfully not experiencing any more, instead they have been replaced by new ones! So no more nausea, constipation or fog-headedness, but hello bone pain, nosebleeds and chronic indigestion. I'm also having terrible sleepless nights which is not aiding my ability to heal. I'm feeling as though I'm operating on the final fumes of petrol in the tank, and I'm not sure where I will get the energy from for the last three rounds.

My neutrophils were incredibly low when I had my bloods done last Monday (they were 0.9 and they won't administer chemo unless they are at 1). Luckily they took my bloods again on the morning of chemo and they'd made it to the required level, but if you see this graph of my neutrophil counts that Tanai drew...

... if they carry on along this trajectory, it's looking unlikely that they will be at the required level by my next scheduled chemo, number 6. It's interesting to see how much they have reduced by each time. I'm trying to think if there's anything I did differently between rounds 4 and 5 which ensured they only reduced by 0.5, but all I can think of is our wonderful restorative weekend at Paddy and Lorraine's. Perhaps the extra relaxation helped! It certainly raised our spirits, so thanks for having us over.

Anyway, I know this post was rather dry and technical but if you got this far, well done for sticking with it, and I hope it was informative!

Half way through chemo

This week I had my fourth round of chemo, which means I'm officially half way through! Cue: celebratory bells, klaxons and all you can think of. It's kind of hard for me to get too excited as it's not over yet, and it's still an uphill battle, but it is definitely a good milestone.

At the half way mark they give you a scan to see how well the chemo is working, so today I popped back to St Bart's for another ultrasound. Although I'm not supposed to get the results immediately (they go to my oncologist, who discusses them at the weekly Multi-Disciplinary Meeting before my appointment with her) I cheekily asked the sonographer if she could let me have a peek at the screen, and if she was allowed to share the measurements with me. Luckily she obliged (I threw in the 'I'm going through so much crap with this chemo business, it would be good to know it's actually working' line) and it was good news. The tumour has shrunk by 60%, meaning it's less than half the size it originally was back in February. It's still there, but the chemo is definitely doing its job.

The news has given me a little resolve. Although chemo is really tough, it's working, and is nuking the cancer, so I need to persevere. I'm also moving onto a different drug regimen. My four rounds of AC are over with (bye bye to the 'red devil' Doxyrubicin) and my next four rounds are 'TPH', or Docetaxol, Herceptin and Pertuzumab. I've been researching these as they have different side effects, and Tanai and I will be purchasing some supplies to get me through these new drugs. For my next chemo session, I have to be in hospital for the full day, from 10am, as they need to keep me under observation for 6 hours following the administration of Herceptin, to check that I don't have an allergic reaction. The Docetaxol (or 'the tax') is the one I've heard lots about. It's the one that can make your fingernails fall off, and it makes your bones ache. I'm not looking forward to that one, but with today's news I will hopefully find some inner strength to keep going for the next four rounds.

My friend Dominic accompanied me to chemo this time, and I got a window seat in the ward, on what ended up being the hottest June day since 1976. We spent a lovely 5 hours putting the world to rights, and I am writing another blog post about some of the interesting things we discussed, around resilience and self-compassion. Dom works for a prostate cancer charity so really I was doing him a favour, allowing him to join me on a chemo ward for 'research' purposes. But joking aside, once again I count myself incredibly privileged to have the kinds of amazing friends who would do something such as accompany me to chemo. Again and again I am blown away by your generosity and compassion, and I know that's what continues to sustain me as this journey gets tougher and tougher.

Neutropenia and immunocompromise

The few friends and colleagues I've explained this to have suggested I spread the news more widely, so here's a little post about one of the biggest risks I face over the coming months while I'm going through chemotherapy. As I mentioned in my last post, the chemo drugs attack rapidly dividing cells (such as cancer cells) and while the cancer cells can't repair themselves very well, the healthy cells in your body (which also take a battering from the chemo) use the three weeks between treatments to rebuild themselves and recover as much as possible. As well as the hair follicles, the cells in my bone marrow and blood are also being attacked. As the chemotherapy medicines damage the bone marrow, the marrow is less able to produce red blood cells, white blood cells and platelets. The most significant impact is on my white blood cells, or neutrophils, which are your body's first line of defence against germs, viruses and infections. Because the chemo is attacking my body's own defence system, I am what is known as 'immunocompromised' during treatment, which means I have a suppressed immune system.

But this doesn't just mean I may have the inconvenience of catching a cold or cough. This is actually a potentially life-threatening situation. If my neutrophil count goes below a certain critical level, I have what is called neutropenia, or neutropenic sepsis; I will not be able to fight off a virus or infection, and will require urgent treatment should I be unlucky enough to catch something. I have been told that if this happens, I need to immediately go to A&E and will be put on intravenous antibiotics, and probably also have a blood transfusion. Not only that, but I have a special card that I have to carry around at all times, kind of like an A&E Platinum card, which enables me to bypass the queue for treatment should I be unlucky enough to end up in the emergency room.

Many of the women I have chatted to in my various support groups have ended up with neutropenic sepsis at least once during chemo, some being hospitalised for a few days. So I've been bracing myself for it to happen at some stage during treatment. As treatment progresses, it becomes more likely, because the chemo is cumulative, so my neutrophil count is getting lower and lower as I go along.

Each chemo cycle I have my blood tested a couple of days before I go in for treatment, and they will only proceed if my counts are good enough. If they are too low, I will either get a lower dose of chemo drugs, or they will delay. My first bloods (back in mid-April) were:

Neutrophils: 4.4
White Blood Cells: 7.1

My second lot in early June were:

Neutrophils: 3.7
White Blood Cells: 6.1

And my third tests just before the last chemo were:

Neutrophils: 2.6
White Blood Cells: 4.5

As you can see, the neutrophils and white blood cell counts are slowly getting lower and lower each time. Immediately after chemo they are very low: in the 5-8 days following chemo I am at much greater risk of neutropenic sepsis, and then as I eat well, sleep well, look after myself and my body heals itself, the counts start to climb again and stabilise as much as possible before I have my next treatment. If my neutrophils go below 1 it means I am at a critical level, and if they are lower than 0.5 I basically need to have a stay in A&E.

Now I've always had a great immune system, I rarely get ill and I am quite cavalier in my approach to infection. I mean, I'm clean and hygienic, but I'm not obsessed or anything. Until now. Things are now very different. I am being very careful about what I touch and keeping everything very sanitary. As soon as I get in to work or home I wash my hands, and I'm carrying hand sanitiser everywhere. I am avoiding eating out, and if I do, I'm eating very 'safe' things (things cooked very thoroughly on a high heat, avoiding prepared salads etc). I'm making my own lunch for work every day, using my own crockery and cutlery, using my own water bottle all day, and avoiding food prepared by others. My colleagues are being amazing, they have had a 'spring clean' of their desks, they are all making sure the windows are open to let in air circulation and if any of them feel at all unwell they are staying at home, to avoid me catching anything. I've changed my contact lenses to dailies so that I don't have to put the same lenses back in my eyes each day, thus reducing the risk of infection. I never eat in public or put my hands or fingers in my eyes or mouth (it's amazing how much I used to do that!) and I never touch anything on the tube. I'm so much more conscious of small things now, such as other people on the tube coughing or sneezing, the wonders of a dishwasher for making sure things are really clean, the cleanliness of chopping boards and the joys of contactless payment for reducing my need to handle germy cash.

I'm also avoiding small children (aka germ factories) as they are some of the biggest risks as I go through treatment. When Tanai had a cold last week he was quarantined on the couch and I wouldn't let him prepare any food (and no kisses for a week, torture!). Basically, I'm being very conscious of all the things I can do to reduce risk, and hoping that those around me are doing the same on my behalf. So thank you for avoiding me if you have a cold, and thanks for being understanding by keeping your kids away until I am no longer immunocompromised. Auntie Carmel will be back in service in a few months.

In other news, I'm on the mend after Chemo #3, and have been back at work for a couple of days this week. It was a tough round, this round, I had severe nausea and fatigue, yet couldn't sleep at all for about 4 nights, which made it very difficult. I was listless and had a fog behind my eyes for days, and the cognitive impairment lasted almost a week, until I felt I had a clear head again. Still, I'm over a third of the way there, and after my next chemo I get to have another ultrasound to see how much the lump has shrunk.

Back at the beginning of treatment I found out that a friend of a friend had named her lump 'Donald' and Tanai jokingly suggested I should name mine 'Theresa'. At the time, I was convinced she'd win this week's election by a landslide and therefore jinx my ability to get rid of my lump, so I declined. How wrong I was! Theresa was perhaps a more apt name for my lump than I had anticipated. Her strength is certain vastly reduced, how delightful.

Anniversary

Last Sunday, 14 May, was a year since Tanai and I snuck off to the Wee Kirk o' the Heather in Las Vegas and tied the knot. We had a whirlwind romance, and that was such a wonderful, giddy, boundlessly happy time, it's hard to think it was only a year ago. Of course I didn't expect to spend our one year anniversary with such a huge chemo hangover, but that's how it panned out.

Getting ready for the wedding, larking in our hotel room

Just married! Having a burger and beer after getting hitched

I really wanted to treat Tanai for our anniversary, as we've been dealt such a crap hand of late, and he's been such a legend looking after me and being supportive and loving through these difficult times. I had anticipated feeling well-ish by Sunday, with it being 7 days after my chemo, so I booked for us to have a lovely afternoon tea in the Barbican Conservatory, a wonderful green-filled space only a short walk from our house. Tanai is a photosynthesist and so of course loves plants, in particular flowers, so I knew he'd love the setting. And it felt like something that would be do-able even if I felt tired.

Despite starting out well this cycle, by Thursday I felt like I'd been hit by a truck. I was completely shattered and feeling very unwell. It's perhaps a little TMI but one of the side effects of the anti-nausea meds is constipation, which I had with a vengeance by Thursday. So of course I panicked and took 6 different types of laxatives, which meant I had diarrhoea by Friday. Ah chemo, the gift that keeps on giving! Consequently, although I was hugely fatigued, I couldn't sleep properly at all, waking every 1-2 hours, preventing me from getting any real deep sleep. By Sunday I was completely exhausted and only made it out of bed with enough time to get ready and head out for the lunch. Simply stringing a sentence together uses up all of my energy on days like that!

The conservatory was delightful, sun-filled and an absolute hit with Tanai, especially some of the fabulous flowers in the cactus house. We sat down for our little sandwiches and cakes, all of which contained ingredients grown in the conservatory. A myriad of charming, intricate flavours accompanied by a glass of champagne; it was a lovely afternoon tea. With my new found taste-buds I would have preferred more savoury to sweet, but my usual self would not have had that quibble. Tanai then surprised me with a Barbican membership as my anniversary present! So I will no doubt enjoy plenty of cultural experiences here over the coming year, just a short walk from our flat. Can't wait.

My handsome hubby

Some loon with an incredible afternoon tea!

Cactus flowers

We then headed home and within 5 minutes I was back in bed for a nap. What a nanna! Not quite the anniversary I would have expected but we still had a charming afternoon and hopefully we can make up for it next year by doing something fun. And of course, we have each other and are still ridiculously in love, which is all you really need. My fabulous friend Nick who was popping in on his way from Australia to Cannes cooked us a yummy dinner that evening and entertained us with his charming company. I'm hoping he's forgiven me for leaving him off my list of bald style icons.

Dinner round our breakfast bar!

So today (Tuesday) I went back into work and I feel as though I'm back on the mend after round 2. I'm still very tired and no doubt will be in bed by 8.30pm tonight, but I can feel my energy levels rise and I'm sleeping better. Once again I'm so grateful to have work to keep me occupied -- I don't know what I'd do without it! I really enjoyed plugging back in to projects today and spending time with my colleagues. I think this week has brought home the realisation of just how long a slog the chemotherapy course really will be. But I'm a quarter of the way there now, and need to keep strong and positive until the end. Thanks again everyone for your kind words and messages, they are definitely keeping me going.

In the sunny Barbican Conservatory. 
My beautiful peacock-adorned headscarf is a vintage 1950s scarf from my friend Bree.