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.

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!

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!)