Neutropenic Sepsis: Definitely ‘Not Great Fun’

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.

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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.

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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.

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You can tell by my expression in this candid shot that I was petrified. Mum only showed it to me afterwards.

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.

10 thoughts on “Neutropenic Sepsis: Definitely ‘Not Great Fun’

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  1. You’re a badass, cancer-fighting, foxy-loving ball of wonderful. Keep on fighting, Ceri. We’re with you all the way xox

    On Fri, 26 Oct 2018 at 16:08, The [Other] C Word wrote:

    > Cerian Jenkins posted: “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 whole experience. It made the whole situation > feel very real, and is actually the first time it hit hom” >

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  2. You are doing brilliantly, fear is only natural given what you are going through but consider this another challenge beaten.

    I’ve had low neuts for 10 years as part of my MDS(they are now around 0.6 so not scary low) but have been lucky to avoid the sepsis that they predicted. I hope you avoid getting it again.

    Your blog is fantastic, really honest and brave. Feel better soon. Ally

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  3. I feel for you. I had two episodes with temperatures 40.5 and 41.5 – The first one was when I was just about to start my chemo, like you, fast pass to A&E, isolated and a couple of days on Haematology ward with iv antibiotics, fluids, blood transfusion and platelets. The second time was on Brighton Pride day, I dropped my partner down to the park to perform at the Cabaret Tent, I couldn’t go as I was on my bad week when my bloods were at their lowest. I came home, felt a bit chilly, closed windows, had a bath, had a snooze. Went and picked my partner up about 7pm, felt tired so I said I would have a nana nap for an hour, temperature normal, I then woke up an hour later, sweating and my temperature had hit 41.5! So again it was a trip to A&E, where I began to have the uncontrollable shakes (Rigor), bloods rock bottom, 0.8 neutrophils, signs of infection somewhere but no obvious site. IV antibiotics again, blood transfusion, platelets. It took nearly 12 hours until my temperature came down. Heart rate going mad. And one final Rigor attack that was the worst, I was isolated in a side room which was great, but it was roasting, no air con, just a fan circulating old warm air. And I stayed there from 9pm until 11am then following day before being found a bed on Haematology. We then found the infection and it was a abscess, which after treatment finally got me discharged.
    It was a very scary time, but knowing I was in the best place with the best care I could have gave us so much reassurance. And after the first episode, the second one I was more prepared for what was going on.
    I was HL stage 4, I had ABVD chemo for 6 months and finished in January this year, on the 5th June I had the all clear. No more CANCER. Whoop! So know I have my 3 monthly check ups and all is good.
    In those days of uncertainty the greatest thing that got me and my partner through was the love and support of family, friends and my facebook family and friends. We shared everything on facebook and was taken aback by the messages of love and support and thanks for highlighting something that is hard to talk about, but also getting the message out there about Cancer. I had so many messages from people who had the same diagnosis, or their parents or partner had and each one came with the great news that they were now cancer free. It gave me so much hope and gave me the strength to fight.
    You will have good days and bad, and I hope that you will have more good than bad. But take that love and support from everyone and run with it.
    Sending you much love. x

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  4. It strikes me that your partner & family are some of the most supportive people one can wish for and they’ll be part of your personal weapons to fight this damn cancer and beat it. I can only imagine, from seing my grandad and his mom at hospital, each with their own cancers, and the scares I had, how you as the patient must have been in the heat of this horrendous alarmimng crisis, from which you came out by your quick response and this massive support, as well as medical team’s cares.

    I think you found all your words really well, so don’t worry about that part, you’re so gifted with them that they flow in this raw and genuine sharing of yourself, each step of the way.

    When you’d posted about this on twitter, I had to look up all the terms because I wasn’t familiar and so as I get educated I can also better understand what you are going through and to support you a tad better than not understanding any of it.

    As I’m sick at the moment, I’ll amend my usual offer for being there for you, to whenever I’m able, as I’ve been getting up at noon the past few days. But, any of your messages shall be promptly responded, asap.

    Once more, I love oyu my friend

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  5. You are obviously very comfortable using social media and it is great that you are using it both to help other cancer patients and to get strength from others. I was ill in the days before social media, I didn’t even have a mobile phone. When I was low I was able to draw strength from the 100 or so get well cards stuck up on the wardrobe door.
    It may not always feel like it but you are doing great and it is your strength and positivity that will see you through. virtual hugs

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  6. Hi Ceri,

    You don’t know me from adam – I went to school with one of your friends and you popped up on my tv timeline when you had your head shaved in prep – I don’t know how or why, but I was sort of intrigued about your situation and started reading your blog. My grandma had both breast and bowel cancer in her life (she was a tough cookie and beat them both) but I don’t know anything about it as I was too young at the time. Reading your blogs has been great and really informative about what you are going through and how it works, which has helped me understand cancer and it’s impacts better.

    You’ve got an amazing attitude and an incredible family around you. I wish you all the best and I think you are a tough cookie too. X

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