I'm a 52 year old husband and father. Another privileged white bloke, but one who realised just how blessed I am during aggressive cancer treatment in 2009 (that I later learnt nearly killed me). In June 2016 I had a second diagnosis and surgery to remove and replace part of my tongue.
We lost the whole of Tuesday. I woke on Wednesday in Marsden's ICU. Still high on whatever they had pumped into me!
Andy asked ‘how do you feel’?
July 5, 2016
I’m not sure how much detail he’s after!
He asked on Friday, my fourth day in hospital. Friday I felt invaded, bathed in discomfort and focused on one single thing: getting out! My medical team seemed happy to connive with me in my hare brained scheme and broke me out after only 103 hours of incarceration! I am in awe of anyone like my sister in law who can spend long periods in hospital. I'm sure I could, because you just do. But I'm just not sure how. The medical team probably shared my view that recovery would progress a pace if I could sleep for more that the occasional 30 minutes and eat food prepared to my exacting standards. I don’t want to slag off anyone at the Royal Marsden because they are professional, committed, empathetic and generally seemingly far better individuals than I encounter in other walks of life. But just on food, they can't give you the sort of one to one attention on stuff like food that I want! Attempting their scrambled egg was genuinely far worse and far more of an emotional down than any medical procedure inflicted on me (while I was conscious at least!)
Getting food right is quite important because I currently have a tongue that feels like a misshapen piece of arm matter far bigger than my mouth and over which I have little control. I’ve just had a Mister Whippy ice cream. It was fabulous. But imagine eating one without using your tongue, just your lips and suction. Oh and my little finger to scoop it out of the cornet when it got that low (sorry).
Before moving away from the Marsden and it's sainted staff, a word or two on Intensive Care. I'm guessing that heaps of people don't get to go there. In 2009 I missed it, I had the briefings about all the lines that they would put in etc, but I deteriorated too quickly to be moved and they had to bring ICU to me in my room! Basically in ICU you're in hospital and you have a nurse (or sometimes two when it was Emma and Rosie together) sitting at the end of your bed all day and all night. It feels a bit disconcerting at first, but they are very good at it. Obviously I cried at the end of each shift - because they had been so great. Which by the way I managed to continue back on the ward - so good were the people there too! How many of us put in a shift at work and leave with positive feedback of that sort?
Also something really struck me about ICU process. I'm someone who thinks about how workplaces work and they have worked out who the most important person is in the ICU and everyone else works around that person. It's the cleaner. Twice a day the cleaner deep cleans your half of the room. Following a set process. And while they do that everyone else, whatever their status, moves to the appropriate part of the room to continue their highly important musings/discussions etc. Imagine that happening in the 'Carry On Matron' hospitals we all grew up with.
Today, Tuesday (and one week after my ‘lost day’ of operation) I feel freed of all lines, drains and other impediments. I feel a bit weak and like I’ve got a sore throat. There’s bruising in some very strange places - what they are calling my donor sites. But above all I feel normal, far more normal than I expected. Except that is for the first time in my (adult) life I’m completely isolated from world events. I couldn’t face the whole Brexit thing - so I haven’t! Instead I’ve sealed myself off. Dealing with one thing at a time is what blokes do best isn’t it? I’ve purposely heard no news or had any conversations about any of it. Lying awake last night my mind wandered there and it was just too horrible - still!!
Up to the Marsden tomorrow (if Southern Trains can manage that!) Let’s see if they have any big news for us.