I spent most of last week in hospital.
In the early hours of last Tuesday morning, I woke up feeling rubbish. I took my temperature as I was feeling decidedly 'eye-ey' (an expression of my Mum's which she used when we were growing up, for that 'hot behind the eyeballs', glazed thing which goes on when you have a fever) and it was 38.5C (101F in old money) half a degree over the "call the emergency number immediately" temperature.
So I called the Emergency number.
This wasn't the first time I had called the out of hours Charing Cross Chemo number. On the first round at about day 9 I'd been feeling weird (hardly surprising!) but a kind of total, all over, inside and out weariness just took me over. So I took my temperature.
I was advised, before the chemotherapy began to get myself an accurate, digital thermometer. This is because a high or very low temperature is an indication of neutropenic sepsis - a condition of the blood where the white blood cells (specifically the infection fighting, neutrophils which make up about 70% of the white blood cells) drop to a dangerously low level. This leaves the body with a much lower defence against any disease. And a much higher risk of death from a simple infection.
In chemotherapy patients the decrease is caused by the chemo drug stopping the bone marrow from producing enough new fighting cells to go around.
When I phoned the first time it was because my temperature was low (below 36C) at 34.8, the sleepy sounding Doctor on the line suggested I retake it an hour later and see if it had recovered at all. I never did because I fell asleep and in the morning it was back up to the 36 mark.
The second time I called was when the poor old veins in my right arm decided to pack up. That time (it was about four in the morning) the sleepy advice was to go to A&E in the morning. So I was able to go to Charing Cross Hospital A&E.
Last week I'd started to feel rubbish on the Sunday (Remembrance Sunday) but recovered slightly on Monday afternoon, so went to get my flu jab (which is safe for chemo patients as it's a 'dead' vaccine. When abouts I had it in the cycle was relevant but I don't remember anyone telling me that! Chemo brain?). I had tried, half heartedly and on several occasions to get through to both the out of hours number on Sunday and office hours number on Monday but with no specific symptoms and my temperature only a little bit on the warmish side, I gave up.
When I was told, at 2am on Tues morning to go to A&E immediately, I went into a bit of an internal strop. I wanted to go to Charing Cross A&E as that's where I'm being cared for (in every sense of the word - they really are brilliant) but there was no way of getting there easily at that time in the morning. But I live only five minutes walk (on a healthy day) from Ealing Hospital.
I don't like Ealing Hospital.
I have my reasons (most of them are rational and based on a number of previous, distressing encounters and experiences I've had at the place). But, after I'd woken Mike (husband) and we'd tried a couple of neighbours to no avail (we couldn't leave our two sons alone at night for what would've been over an hour, if Mike had driven me to Hammersmith). I resigned myself to my fate and agreed to go to Ealing.
They were (almost without exception) brilliant.
The building is still horrible and not perhaps quite as clean as it could be. But the staff were great. Eventually I was moved up to the 8th floor (where the views are fantastic!) and because my immunity whilst luckily not neutropenic, was at a low ebb, I was given my own room. I can't say it was pleasant - it took until Wednesday evening to get my temperature down to 'normal' and I was hooked up to a drip (on my poor old right arm again because Ealing don't normally use portacaths (of this more another day).
To say I was at a low point, both physically and emotionally is a bit of an understatement. I felt needy and hopeless and SO fed up with the enforced inertia. I became inert. I stopped writing this blog after a couple of paragraphs. I dozed off at all hours of the day. I had to wait for people to bring me my meals (which were surprisingly good for hospital food - the macaroni cheese was a particular success as was the cauliflower & broccoli cheese (cheesy sauces are obviously a speciality of the chef!)). I couldn't leave the ward. But wandered round as much as possible after I started to feel better, just to get out of bed.
I'm not good at being looked after. Looking after others, I can do that but letting people look after me is really hard. And I don't like lying around all day, it seems like such a waste of life. Last week I had to. I got a bit needy on social media too (which is where I came up with the title of this blog - it'll be going into a poem at some point!) but my friends on Facebook (both local and further afield) were amazing (and though much fewer in number, no less so on Twitter too). With kind words, messages of love and support, chatty PM/DMs, funny photos and jokes, (and a couple of very welcome visits in person with delicious things) they all rallied round and helped to lift me out of the pit I was sinking into. Facebook and it's ilk may be the scourge of modern life in some people's view, but I know I wouldn't be in such a healthy mental state without it. Weird huh?!
Leaving you with the poem I wrote on Friday night when I couldn't sleep (despite finally coming home at seven that evening and lying in my own bed, I was on so much anti-this & anti-that I was totally wired!)
The straining of a spring in a watch wound too tight
The wild wind in the tall trees nagging me at night
The World weary tallship heaving t'ward harbour home
The bird with broken white wing, dying all alone.
I am all of these in part
But these aren't all that I am
I am me - I am a human with a beating heart
So I will carefully consult the chart
And place my feet upon the ground
I will walk to my rhythm and I will revel in the sound
(News of stand-up gig next time...)