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Sunday, 6 August 2017

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!

Monday, 24 July 2017

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.

Saturday, 22 July 2017

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!

Saturday, 15 July 2017

Stitching your parachute

My wonderful friend Dom accompanied me to my fourth round of chemo last month and while we were having a 5-hour natter about various things (we're both very good at talking!) he reminded me of the concept of 'stitching your parachute before you need it'. He couldn't remember if it was my advice in the first place or our mutual friend Caitlin's, but either way, it rang a bell for me and it's something I've been very aware of as I've researched the concept of resilience in light of my diagnosis. I suppose in very simple terms it refers to taking time to do the work of building your own personal and emotional resilience before you hit a crisis point. If you stitch up any holes in your parachute when you're happy and resting on the ground, it's ready for whenever you need it. If you leave it until you're in the tumbling aeroplane, it's too late, and it won't be adequate to save you.

As part of my own work looking after my mental health over the last few months, I've been pleased to discover that I'm already quite good at regularly stitching my parachute, and although I may not have had the vocabulary to describe it, self-care has always been something I've practiced. Whether it's something as simple as taking a Sunday evening bath, dropping some essential oils into the water and popping the Wittertainment podcast playing on my phone while I soak, or something as concerted as signing up to the Headspace app and resolving to practice 20 minutes of mindfulness each day, I've always taken time out for myself. I find walking incredibly restorative for my mental health, and would often walk the hour to and from work, pacing briskly and listening to a podcast or audio book, enjoying the changing seasons over the weeks. Cooking is another way I wind down and I usually cook my meals from scratch, enjoying the time it takes to prepare food, the creativity involved and the delicious rewards at the end. I often take myself round museums and galleries on my own, and enjoy 'me time' amongst the art or stories from other times and peoples. All these things are little ways over the years I've practiced self-care, taken some time for myself and shored up my mental health reserves.

Being resilient is not about being hard and impervious to the knocks and stresses life places upon you. It's about being flexible and able to cope in the face of adversity, to draw on internal strengths and those of the networks you've built around you. It means that when you suffer stress or trauma, you have the ability to adapt, to bend and stretch in the face of it, and to somewhat 'bounce back'. Importantly, however, it's not about being hard or unfeeling, or trying not to be affected by life's events; it's more about allowing the stress or trauma to take you in an unexpected new direction and allowing yourself to go with it, and not try to force your life, or yourself, to be a certain way.

With wonderful serendipity, just after my diagnosis my employer teamed up with the mental health charity, Mind, and decided to roll out some Emotional Resilience training for all staff in the organisation. We had an interesting presentation and were given time to think about what was in our 'resilience toolbox'. We discussed the pillars of resilience, and how we can cultivate emotional resilience in our lives and more effectively manage stress. There were some really useful tips in the presentation and it definitely made me think about this whole thing in a different way. Interestingly, it advocated writing as a way to step back from negative thoughts and get some distance. The presentation summarised the five ways to wellbeing thus:

Give: your time, your words, your presence
Keep learning: embrace new experiences, see opportunities, surprise yourself
Be active: do what you can, enjoy what you do, move your mood
Connect: talk and listen, be there, feel connected
Take notice: remember the simple things that give you joy

I think these are all small things that can contribute to positive mental health, and a stock of resilience for when life gets touch. They are great ways of stitching up one's parachute in preparation.

Another thing I've started to read about is post-traumatic growth, and positive psychology. These are theories about things you can put in place to ensure you grow from adversity, rather than being beaten down by it and suffering post-traumatic stress disorder. The theories acknowledge that post-traumatic stress is inevitable, following something as traumatic as a cancer diagnosis, but that there are measures we can put in place to deal with this stress, to go with it, and to emerge at the end with increased strength, wellbeing, and a practical pathway to positive change. It all sounds rather pop-psych but I do think there's some truth in it all, and I'm interested in reading more. One book I read summarised five dimensions of post-traumatic growth:

Recognise and use personal strengths
Nurture closer relationships
Enjoy a greater appreciation of life
Search out and embrace new possibilities
Deepen spiritual development

Again, all great advice, which according to Aristotle, can lead to a form of happiness called Eudaimonic wellbeing, which is particularly flourishing and fulfilled. Well, we'll see about that, at this stage I'm just grateful to be engaging in these thoughts, to continue to function at work and at home, and to cultivate hope and optimism while I'm going through this. With chemo side-effects robbing me of many of my usual forms of self-care (no energy to walk, changed tastebuds affecting my enjoyment of food, lack of sleep etc) it's taking most of my strength just to get through each day. I'll save the real rebuilding work until I'm done with active treatment.

A running theme through a lot of the things I've been reading around this topic is the importance of building strong networks around you. I've always had a huge capacity for friendship and have cultivated relationships with people all over the world throughout the years. This is undoubtedly a huge source of strength for me at the moment, as I receive messages, gifts, thoughtful cards and offers of assistance from many of you, my global team of cheerleaders as I navigate this particularly tricky time. Even when I have a wobble, you've got my back, so thanks everyone. You're the best tool in my resilience toolkit. (Naw!)

Monday, 26 June 2017

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.

Sunday, 18 June 2017

Younger Women Together

This Friday and Saturday I went on a two-day retreat run by Breast Cancer Care called 'Younger Women Together', an annual event they run for women under the age of 45 with a breast cancer diagnosis. They run these events in 5 different parts of the country so of course I signed up for the 'London' edition, only to discover that it was held only 20 minutes' walk from our flat. It felt a bit silly staying in a hotel so close to where we live but I really wanted to take this time out to meet other young women going through the same thing, and to get the most out of the event.

The schedule was packed, with guest speakers including a brilliant medical oncologist who gave us a whistle-stop tour of cancer, prognoses and treatments, as well as new studies and the future of cancer treatment; a presentation by a nutritionist about diet, nutrition and cancer; and a fab session on exercise and its importance in fighting cancer and preventing it from returning, as well as keeping my energy levels up while going through treatment and fatigue. There were also smaller break-out sessions on menopause symptoms (yes, I will have the joys of hot flushes etc so needed some tips and tricks); intimacy and sexuality (that discussion definitely stays within those four walls); and a 'laughter yoga' session (quite bizarre but strangely energising). Did you know that laughter is proven to release hormones in the body which actually help to boost your immune system and fight depression? I think I'll be booking more tickets to comedy events in the future. The chap leading the session also talked about how life isn't black and white, in that tears don't always = sadness and laughter doesn't always = happiness. There is awkward laughter, you can laugh with relief, confusion, or with empathy. And there are tears of joy, you can be moved to tears by something beautiful, you can cry with empathy and relief, and sometimes tears are a release. It sounds obvious, but it was good to be reminded of this simple fact.

Without doubt, the best thing about the event was meeting 39 other phenomenal women, from all different walks of life across the South of England, at various stages of their treatment, and feeling like I could speak freely about what I'm going through and take strength and advice from their experiences. There was plenty of over-sharing, a fat dollop of black humour, tears, hugs and a lot of laughter. There were bald women, women with one boob, flat-chested women, women with fluffy post-chemo hair growth, other women in headscarves, women a couple of years post-treatment who had run marathons and swum Lake Windermere to raise money for cancer charities. Every single one of these women is phenomenal, strong, a warrior woman. I took something from every encounter, I was inspired by their stories, I got plenty of tips for dealing with what the future holds, and I made new friends. I'm relatively early on my cancer journey, and there's a long way to go, but I feel less scared and alone knowing these women are by my side.

My favourite talk of the event was the closing one, by an amazing woman called Kelly who was diagnosed with breast cancer in 2006, just as she'd quit her job and was about to embark on a round-the-world trip with her fiance. She took us through her journey with all its good times and dark days, which included a mastectomy, chemo, appearing with Gok Wan on 'How to Look Good Naked', her wedding, cancer recurrence four years later, more chemo, a new calling as an underwear model and training department store ladies how to help post-surgery women find lingerie, etc. She found new reserves of inner strength, and confronted her biggest fears. I found myself crying throughout her talk, but not simple tears of sadness. I felt recognition, I saw into my future a little, I was inspired by her attitude, by her honesty, by her fragility and her strength all at once. I really hope that when I am no longer receiving treatment and with luck when I am well, that I will be able to help and inspire other women earlier than I on their journeys.

So now I'm back home, and I have a few days off as the wonderful Rosser family are visiting from Australia so I'm enjoying spending a few days with them. It's so lovely having my Australian family finally meet Tanai! And then I head off for my fourth chemo on Wednesday, after which I will finally be half way through chemo. I met a woman at the BCC event who had a similar diagnosis to me, except that her tumour was twice the size. She had what's called a 'complete pathalogical response', which means that by the end of her chemo, when they carried out scans and biopsies before her surgery, they could no longer find any cancer in her breast. They still did some small surgery, to excise the margins around where her tumour was, but it prevented her from needing a mastectomy. Fingers crossed the same thing happens for me!

Here are some recent headscarf photos for those of you not on instagram. I've had some wonderful gifts of fabric and scarves, and I'm really enjoying trying even more new styles. Although in this recent heat, I may have to rock the bald look!


Top left: a gorgeous scarf from my Auntie Siobhan who bought it while on holiday in Morocco. Top right: two scarves tied with a 'double halo' style as demonstrated by Yassmin Abdel-Magied. Bottom left: some gorgeous Marimekko fabric from the Rossers which I finally got hemmed. Bottom right: my scarf from Knots UK, tied in a unicorn style.

Saturday, 10 June 2017

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.