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.

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.