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.

On becoming aware of my own mortality

Ralph Waldo Emerson once said, 'When I read a good book I wish that my life were three thousand years long'. As many of you know, I'm an avid reader (I'm on Goodreads here) so one of my random thoughts over the last couple of weeks has been: 'Gosh, I need to become more selective about what I choose to read, as time may be short, and there are so many books still unread'. I think that was my slightly circuitous way of expressing a new awareness of my own mortality.

Until now, my mortality has been a fairly abstract thought. Of course, it's not a new idea: we all know that we will die someday, but it's not until this moment that I believe I've truly understood the concept. Perhaps this sounds a little cliched, but once you stare death in the face, the world appears completely different. Even if I had ever tried to intellectualise it before, I could not grasp its true meaning.

And it manifests itself in different ways. This weekend, we are heading to Heidelberg for a short break, to visit some of my family who live there. Over breakfast I was explaining to Tanai that my uncle Paul retired last year, and I'm looking forward to finding out more about how he is enjoying his retirement. Last time I visited Heidelberg he was just about to finish his job and was planning to pursue all sorts of interests with his new-found free time. Tanai ruminated on the subject of retirement, and concluded that he, too, is looking forward to retiring, and the freedom it will bring. Suddenly I paused, and thought: 'I hope I'm still around when you retire so that we can enjoy it together'. This feels quite shocking for me: I've never been maudlin, or thought extensively about my own death, and to experience these reactions is new to me. When I shared my thoughts with Tanai he confessed he'd also felt similar things recently. Often, we will talk over breakfast or dinner about our plans or dreams for the future. And yet, recently, we have both (consciously or subconsciously) avoided discussing too many dreams far into the future. We cannot say for certainty what our dreams or plans are for when we are old, as we no longer know we will be old together. 

This is not to say I've suddenly become morose or convinced I will die soon. I remain pragmatic and optimistic and keen to overcome this new setback, but it's still an interesting revelation. I suppose I'm now aware of a potentially changed timetable; a sense of urgency where before I felt I had plenty of time left to do the things I want to do, and for Tanai and I to have all the adventures we wish to have together. I suspect it will lead to a reassessment of my priorities. I understand now why many people who have beaten cancer have a renewed sense of vigour, and often completely change their direction in life. Therefore, it has brought about a time of contemplation in me. I have been reflecting on where I am in my life, and how I feel about my life choices.

Happily, I think there is very little I would change. I'm feeling fulfilled in my job, my studies, my relationship and (for the little time left over for it) my social life. I have a huge capacity for friendship and cherish my friendships with people all over the world. Of course I'd love to have more time and money to see more of my friends more often, but I do as well as I can. I'm glad I took a gap year a couple of years ago and fed my soul with some solo travel. And I'm finding my masters degree incredibly rewarding. I don't have regrets and can't point to something significant that I wish to change. I suspect the impact of this growing awareness will be more subtle, and perhaps more fundamental.

Essentially, life feels to me more precious, more fragile than it did before. Moments are imbued with more value, and I do not wish to waste any of them. Therefore, I don’t want to spend my waking moments scrolling through a litany of Trump’s latest imbecilic actions, or frittering away evenings on things I’m only half-hearted about: instead I wish to use the days of my life wisely. Yes, I wish to read good books; to be absorbed in great art and culture; to travel to new places; to spend time researching things that interest me, seeking new knowledge, wrapping my brain around concepts and discovering great writers and thinkers. I wish to spend delightful weekends experimenting in the kitchen with my favourite sous-chef. To enjoy long, languorous evenings drinking wine and talking shit with my wonderful friends. 

Life is a series of choices, and suddenly I’ve become a lot more selective about what I shall choose.