After two nights and three days on ward 71, I escaped home on Friday. First ever hospital stay done. Packed full of antibiotics, feeling miles better and in awe of the superheroes that work in our hospitals (again!).
I was feeling pretty low over the weekend and into the start of the week - see the last blog post! But I woke up on Tuesday feeling very unwell; shivery, sore throat, temp of 37.7, so we called the Cancer Treatment Helpline for me, for the first time.
The Cancer Treatment Helpline is the equivalent of NHS 24 for cancer patients in Scotland. The staff who man the phones are trained in oncology triage and they work through a list of questions based on your treatment plan to help establish what’s going on.
Two things happen if you call: an Oncology nurse will chat to you and give you some advice if you clear the Q&A, or you will be referred to your nearest Cancer Assessment Unit (CAU) to be checked over.
For us, CAU is the Western General and only 10 minutes away. We’re really lucky it’s so close by. We frequently meet and chat with people who travel much further; from Perthshire, Fife, the Borders, I can imagine a long drive is the last thing you want when you’re feeling utterly pants.
Neutropenic Sepsis is not something you want
At 10am we arrived on CAU, essentially cancer A&E. We spent a lot of time here with Keith, so we know it well, and it turned out two of the team recognised us too. This has happened a couple of times now chatting to both nurses and clinical staff who looked after and recognise Keith, and it’s so friendly and oddly reassuring when we do.
On arrival we were met with the very reassuring assessment team. I was given a large seat in bay 6, a jug of iced water, all of my obs were taken and my hands and arms were checked for signs of cuts, grazes, cannula site problems. Any possible reason I might have an infection. Bloods were taken, a new cannula placed for any drugs I might require, and my obs were monitored hourly.
My temperature was 37.7 and I felt rubbish, but was told I still looked well which was a reasonably good sign - probably the fake tan and tattooed brows, every little helps!
Despite looking well, my Doctor returned to tell me my neutrophil count was 0.67 - not none, but sitting in the ‘very low’ category - and all of my infection markers were high. I had a diagnosis of neutropenic sepsis and was going to be admitted. Gutted.
Neutrophils are white blood cells and they’re the ones responsible for fighting infection. Chemo obliterates them as it works to kill the cancer cells. 10-14 days after chemo they’re at their very lowest and then they begin to bounce back as your incredible body works out you’ve lost something fairly key.
The normal neutrophil range for a healthy person is between 2 billion and 7 billion neutrophils per litre of blood, but for simplicity, Doctors refer to them in a single figure: ‘Your neutrophil count is 3’, for example.
You don’t want only 0.67, ideally.
Around 7.30pm I was transferred over to my ward and my bed for the night.
Ward 8, Haematology, is where I was to be transferred but they’ve shipped out to Ward 71, a Geriatric Medicine ward within the new Royal Victoria Building whilst Oncology is given a much needed face lift. To say this hospital is another world is an understatement. We knew the Oncology building was old, but the comparison when you walk onto a brand new ward, is bananas.
The Western General is in the middle of a big Oncology overhaul. Wards 2, 3 and 4 are all being improved or moved, Ward 1 is being extended and Haematology is being completely remodelled to provide single room accommodation only. It’s much needed and the difference in the hospital experience between new and old is staggering.
Keith was slightly indignant that my first hospital stay would be in a private en-suite room. Most of his hospital stays were on a ward of 8 people sharing one bathroom and shower (see, much needed overhaul!) - but sorry not sorry, I was delighted!
Bugs and drugs
The most effective treatment for sepsis is to find the source of the infection. We covered everything possible; cuts, cannula issues, ear infection, throat infection, UTI, viruses. Chemo caused a lot of mouth ulcers and one on my tongue had been white and unhappy looking for a couple of days.
In the end, my mouth ulcer had burst, let in some bacteria, set up an infection and put me in hospital.
Despite our fanatical stay-away-if-you're-sick rhetoric, constant hand sanitising and cleanliness, a mouth ulcer gave me sepsis.
Unfortunately, your mouth is the dirtiest part of your body. It’s full of good and bad bacteria. Your saliva has strong enzymes in it which kick-start the digestion process. Despite the usual teeth brushing, mouthwashes and care, it will never be completely clean, and there’s nothing you can do about it!
I was given 10 rounds of super strength IV antibiotics in total. After a full 24 hours of antibiotics my neutrophils were coming back up but my infection markers hadn’t changed. It was only by the end of day 2 that my infection started to come down.
Never take antibiotics for a virus. Never expect or ask for them from a doctor if you’re feeling unwell. Only take them when you need them because one day you need those babies to really bloody work!
To help my saggy white count I'll now also take injections for 10 days after every chemo to help them bounce back, plus some tailored antibiotics to try and mitigate the mouth ulcer risk around the 10 day mark.
Hoorah for magical medicine and all of those who work in it.
Side note - If you’re shivery at 2am and your temp is 37.9, don’t get back into bed or face the wrath of a lot of your medical team! You’re probably not warm because you were sleeping under too many blankets. I was told off by no fewer than 4 doctors and nurses.
If your medical team suspect you of having sepsis you must be on antibiotics within an hour not back under blankets… Lesson learned.