Home time (post dated)

Checking out

After 13 nights, (a day early),  finally time to leave the Harley Street Clinic and head home – ironic given i now have the look of a homeless about me!

It would be easy to wax lyrical here about how wonderful all the staff/treatment was and how in a way I’m sad to leave the safety of the coccoon that’s got me through the last 2 weeks. Boll@cks to that, I can’t wait to get out of the place. Don’t get me wrong, what my surgeons were able to do was incredible, some of the nursing was great and the speech therapy/dietician/ physio teams have been  instrumental in preparing me for getting home.

It’s all about getting home though. By all means cheer and clap me in hospital when I manage to sip water without inhaling it to my lungs, eating a whole yoghurt, or when I manage 3 stairs on crutches with 2 physios on either side of me. Initially I felt I was being patronised ( which would have been more inspiring in fact) but it simply turns out that they’re very easily pleased. Personally I would have preferred to have been pushed harder. Come cheer me when I’ve made it all the way to the pub this weekend, drank 4 pints and not had to press a red button for someone to come help me to the bathroom.

The last few days in hospital were spent having swords, needles, drains, stitches and painkillers removed whilst having fluids, puréed foods and tedious exercises introduced. The removals hurt a lot more than expected whilst the introductions proved much harder to overcome. There was also a lot of discussion about the importance of suction and the benefits of swallowing versus spitting in the recovery process. I was very mature in these discussions – honest. (Turns out swallowing is much more effective -who knew!)

Status Report

Now back at home, it’s probably worth summarising where I’m up to in terms of recovery:

• The replacement of my jaw with my fibula was a success – often it can ” not take” for any variety of reasons. In my case it has taken very well it seems.
• In effect I have a broken leg, so will be on crutches for another 4 weeks or so. (Funny how they glossed over telling me about this bit initially.)
• I still have a hole in my throat/chest from the trachythingymagig. This is starting to heal slowly but I can probably still do darth Vader / phone sex pest impressions for another week or so.
• I have lost almost 10kg in weight. This is despite permanent feeding of high calorie/protein supplements directly to my stomach.
• Histology/pathology reports on tumour due by the end of the week. This should dictate the extent of radio/chemo therapy needed.
• Whilst there’s still some significant swelling, this has finally started to reduce (both inside and out).
• I have limited sensitivity in my lips and tongue. I either need to learn to compensate for this quickly or buy a bib!
• The nerve damage caused to my hands during surgery is a pain in the arse, especially now I need said hands for the crutches. I’m due a further mri scan and nerve test next week to determine the extent of the damage but they mostly think it’s only a short term thing. It bloody better be, I only have about 40 % functionality/ strength in my hands right now. (Still no idea how it happened, maybe they dropped something on me or knocked me off the operating table.)

Pain management

Generally I’m not a fan of masking pain via painkillers etc – pain is a warning mechanism for your body after all and a false sense of security can be dangerous. (I am happy to contradict myself massively by using alcohol for this purpose instead.)

Whilst it felt like a good achievement getting off all the painkillers this week and going home on just the odd paracetamol, I now realise this is a hollow victory. My face, neck, leg and hand hands are still bloody fragile but I need to focus on eating, drinking,getting my strength back and working towards normality again. Ergo, let’s get dosed up on pills otherwise this process could take ages.

Patience

Those who know me well will appreciate this is not one of my strengths. If I’m honest, i don’t think I’m about to change so apologies in advance for any sulky behaviour related to not being 100% fit asap. That said, I’ve given up trying to compare day by day improvements. There’s so much going on in my body right now that it’s impossible to have improvements every day and often things will get worse before they get better. I’m comparing week by week instead now – far more motivational!

No place like home

Having been back home for almost 48 hours now, I’ve managed to enjoy a number of things for the first time in 2 weeks:

• More than 3 hours’ sleep in a row. ( 7 in total last night – hospitals are crap places to try and sleep).
• Fresh air.
• Beer – in beer garden – in the sunshine, happiness is!
• going 5 minutes without someone checking my blood pressure, temperature, pulse or asking for my date of birth.

The next week will be spent focusing on box sets, enjoying the sunshine, euro championships and trying to make mashed up food more interesting and the odd checkup with the docs no doubt.

The hardest bit, ( or at least the bit I was dreading the most), is over now and all seems to be mostly going to plan. Here’s a couple of photos ( taken 11 days ago and yesterday

to remind myself as much as anything to try and be patient. At the same time, they show how quickly things can improve if you don’t piss about feeling sorry for yourself:

If that isn’t positive enough, consider this comment from Jo yesterday:

“do you know, you’re the first person I’ve ever visited in hospital who’s made it out alive!”