Chapter 19 - So Far So Good

Am I the only one who sees this as funny?

I hate to tempt fate, and I am taking every day as it comes but looking back to the equivalent days of Chemo #1 back in October, I was not starting from the same playing field as this time. By now I had a temperature, a blood clot, a very swollen arm, was on antibiotics, was quite sick and feeling decidedly unwell. To date - and I am touching wood and crossing fingers whilst I write (excuse the typos) - I seem to have got away largely unscathed. But there's time yet, as I have only just gained neutropenic status (I have inserted a link here because several people have asked what nuetrapenic means) which means I am extremely vulnerable to infection for the next few days until the chemo is out of the system and my blood cells, especially neutrophils (white cells responsible for fighting infection) and platelets are on the rise again.

Time to Think
So for the past week, in between chemo treatments, I have been feeling relatively 'normal'. I know that because I have felt the onset of tedium creeping on and without the distractions of physical problems I have had time to think, listen and absorb what has been going on around me on this open ward. I have to say that I must consider myself extremely lucky inasmuch as my prognosis is good (with the caveat ringing in my ears "if you can survive the treatment you can survive the cancer").

Horace and friend in full flow this week.

The turnover of patients on this ward is very high and often transient; I see people I saw weeks ago, coming in for another planned batch of chemo or radiotherapy; others who are on their way home for palliative care, having exhausted all other avenues (of these some hoping for the best, others simply out of it on morphine and other stuff); others who appear to be completely healthy but obviously aren't. Some arrive for a day, others a few days, others weeks (although like me they probably spend some time in a sideroom). All of them have to wait forever for their take home medications and discharge papers if lucky enough to be released into the world.

The thinking is largely positive; not a case of if I get well again, but how quickly. At other times, as someone described it to me, it is difficult not to think about a day in the future when that 'icy hold might touch your shoulder'. This is not being negative, it is being human; realistic rather than pessimistic.

Even my meds are festive - thanks Photoshop and Hazel!

Another World
Being in hospital is like being in another world; a world regimented by routine, procedures, frustration and bureaucracy, missed communication mixed with the most excellent of clinical care. Nothing/everything is easy, and things can happen annoyingly slowly - even the simplest of things. Everything is done to  the clock unless the staff happen to be busy in which case time will slip.

For the most part you are treated as a real human being; at times, by a few (often temporary or agency staff) you become a number (eg 'the bloke in Bay 1, Bed 3') and a series of squiggles in your medical records. Ask for access to those records, or a status of your state of health in a particular area, and sometimes it's like you were asking to see state secrets. Very much a need to know basis. I constantly battle with ensuring that the staff know that I am a human being, with a life outside of here that I came from and will go back to. If I didn't I might easily become as institutionalised as some of the other inmates here. Which probably explains my obsession with getting home for the odd day or so now and then. This pensiveness has on occasion been interpreted as my 'morale being low' and the appearance of a sudden prescription for anti-depressives. No! It is just the human brain reacting to an alien environment.

It all comes back for the need to have an identity; ask a retired solicitor what he 'does' and he will more than likely reply "I'm a retired solicitor", not just "I'm retired". He naturally wishes to retain his 'badge/label and purpose in life. And it's the same in hospital: however ill you might be, you are someone, not just a patient.

Oh, it's beginning to look a lot like Christmas
And it is, by golly. Nurses singing carols and wearing reindeer antlers and Father Christmas hats, a flashing Christmas tree, tinsel above the doorways and even the most irreverent but innocent decoration of a a pair of red baubles hung above the entrance to the male ward, like the parade of heads at Traitor's Gate at the Tower in Henry Tudor's time. Funnily enough, only Sally and I saw the funny side to this - for which we naturally were accused of having smutty minds.

Apparently the nurses go to a lot of trouble to make Christmas Day as bearable and enjoyable as possible on the ward for those can't get home. This must be terribly difficult as I guess no-one, patients or staff, would prefer to be here than at home with their loved ones. I know where I would rather be and that is, hopefully exactly where I will be. My neutrophils may be on the way down but my optimism is most certainly going in the other direction.

The roller coaster continues

It could be the chemo, it could be lack of blood cells, platelets or whatever but as stated above, my emotions can swing high and low quite quickly and dramatically. One minute you're going along a straight bit then all of a sudden you drop off the edge. This happened to me last evening when, surrounded my hacking coughs, moaning and zombies, plus the prospect of not seeing anyone - especially Sally - for a few days whilst I 'recover' I just came over rather tearful. I have to say that, quick observation and thinking by the nurses, plus the availability of a spare sideroom, meant that I was whisked away from the open ward and put back in the privacy of my own room once more. My 11th bed move and seventh sideroom in seven weeks, and probably one of the most welcome. A small thing but worth its weight in anti-depressants.

Not sure about the fan? What's that for?

Well connected

Following my Yellow Peril chemo I am now connected to Horace for two/three days whilst they flush it all out again - meaning the inevitable weight gain (5.5kgs of fluids in 24 hours!), many trips to the loo, having to remember that I am hooked up whenever/whatever I do, and the constant whirr/clatter of the pump. In addition in goes the three hourly antidote and sleep becomes rather haphazard. But so far, so good - says he touching wood and crossing those fingers and toes.