I’ve not updated, or at least not properly, since I was admitted to hospital on Sunday with neutropenic sepsis. I’ve been taking my time processing the experience. It made the whole situation feel very real, and is actually the first time it hit home that I might actually die from all of this.
It began at about 7am when, as usual, I had been up and pottering around for a couple of hours (thanks to Prednisolone) and was feeling a little under the weather – a bit shivery and with this ongoing cough, but nothing massively disconcerting. I performed my hourly temperature check and looked at the result in horror; 38.4C.
As a chemo patient there is one thing drilled into your mind again and again by the medical team; if you have a temperature of 38°C or above, whether you feel unwell or not, it is an emergency. Thanks to chemo, temperature is pretty much the only way of telling whether your body has a life-threatening infection or not. 38°C is ‘get your ass to A&E’ time.
So that’s what we did.
After calling ahead, and then showing my chemo book ‘letter’ (which addresses unfamiliar medical staff and tells them that as a chemo patient I need to be prioritised and in isolation – handy. Wonder if I can use it at busy restaurants…?) I was rushed through to the High Care Unit in A&E at the Royal United Hospital and put in an isolated cubicle.
I had a cannula inserted (UGHHHH) because they weren’t comfortable with the PICC line and were worried it might be the infection site, and they tried to persuade me to have a catheter – but, thanks to Tracie’s backing, we were able to convince them that it was an unnecessary medical procedure and that keeping track of my urine would be, heh, a piece of piss.
Results came back quickly, and showed that I had a) neutropenia and b) had neutropenic sepsis.
Having neutropenia means “that there aren’t enough neutrophils (a type of white blood cell) in your blood. White blood cells are important in fighting infections. Many people with lymphoma – and other cancers – are affected by neutropenia at some point during their illness and treatment” (from Lymphoma Action).
As for neutropenic sepsis, it’s not great fun. According to Lymphoma Action, sepsis is a “serious, whole-body reaction triggered by an infection. In people with neutropenia, who are less able to fight infection, it can develop much more quickly than normal. This is called ‘neutropenic sepsis’ or ‘febrile neutropenia’. It can be life-threatening and it must be treated urgently“.
I was started on a bucket load of antibiotics to kick the ass of whatever this infection was, as long as it was bacterial. If viral, then you sort of have to wait it out unless the worst comes to the worst, in which case they give anti-virals.
No beds were available for me in any other ward, and so we camped out in the High Care Unit for a while. As usual with all things cancer, all we could do was wait.
It turns out that A&E, and the High Care Unit in particular, is a deeply unsettling and humbling place to spend any length of time, let alone hours on end. I’m genuinely in awe of the amazing staff who are present day in and day out.
The intensity of everything happening around you, regardless of your own situation, is startling. Fear, love, anger, grief, panic, relief; A&E plays host to the rawest of human emotions and there’s little privacy available. Curtains are drawn on each bay, but there’s nothing anyone can do to stifle the sounds of other people’s situations. It’s crushing.
I’ll admit that I was scared. Really scared. Although I knew I was in the best place for my condition to be treated, it was wholly uncharted territory for me and my family.
I’d been patting myself on the back for getting through the first round of chemo largely unscathed by side effects, yet suddenly here we were. It wasn’t something I could prep for, and I couldn’t make it easier with a well-organised ‘to do’ list. I had no control over the situation. I didn’t even understand the situation.
Six hours after arriving, a bed became available for me in another ward (where I was to spend the next three days – but that’s a whole other blog post) and I was finally removed from the High Care Unit. Big shout out to my parents and partner for staying with me through the hours of waiting.
I’m not really sure how to finish this post. I feel like I should be able to say something profound and helpful for anyone reading this who might be worried about going through a similar experience, but I’m struggling to find the words.
What I will say is that it apparently becomes far less scary each time (yes, it’s expected to happen a couple of times during my kind of treatment) – the first is the worst because it’s fear of the unknown. I can also say that, once I was clear of A&E, everything was a lot less intense and frightening – in fact I ended up having quite a nice little ‘staycation’!
That’s all for now folks, but do drop me a comment or message. It’d be nice to hear from some readers.