The Toxic Twins

We arrived at the Churchill at our appointed time on Sunday to be told there was no bed on the ward for me! Not the start I wanted on what was already an emotional and stressful day. ½ hour of waiting produced a bed, albeit on a different ward, needs must. I was eventually settled in and visited by my surgeon who produced the consent form for me to sign. She ran through the form in great detail, what was going to happen, when it would happen and maybe it wouldn’t happen (??). Then she got to the part about the risks. This seemed to cover every eventuality from a slightly sore throat all the way through to death! Didn’t seem a lot of point in not signing it when she put it like that. I was given a nicely curled up ham sandwich at about 5pm and then another at 8pm, that was the total of my sustenance and my last solid food for some considerable time.

The night’s sleep didn’t really pan out as the one other person on the ward snored like Snorey McSnore Face, so it as a combination of listening to my iPod and reading my Kindle that eventually bought a couple hours of sleep.

I was “Nil by Mouth” from 6am on Monday morning, but wasn’t actually taken into theatre until nearly 8am, patched, worried, scared and alone.

My next vague memory is waking up around 7pm on ITU and feeling like crap! Carol and Max were there, but I don’t really recall seeing them. Apparently I had another reaction to the GA, so the team called RBH who commented, “Don’t worry, he always does that”…… I also vaguely remember shivering so hard that I think I was wrapped up in a heat blanket until I’d settled down.

My time on ITU wasn’t overly pleasant I’m afraid. Very little information was given to me and whilst being treated to a bed bath by two (I think) Thai nurses, they insisted in talking to each other in their native language after they’d finished washing me down, this really upset me and obviously I wasn’t able to ask them to please speak in English. No happy ending for me.

At around midday on Tuesday I was eventually moved to my home for the next couple of weeks, Blenheim Ward. I’m in a cubicle with another chap who’s had a similar treatment to me, but he seems to love using the Nurse Call button, preferably every 30 minutes or so during my first night in his company. He also thought it a bright idea to boot up his laptop and play a film on Netflix, without headphones, at 5am!!! Luckily the nurses got to him before I could tie a knot in his catheter tube.

I looked in the mirror for the first time on Tuesday morning, hmmmmm…… not sure exactly what I expected, but by god that’s one hell of a scar. 

I had the first new characters for a while, I was going to call them the Toxic Twins, in a manner of admiration rather than anything else. There are a pair of nurses on the ward who make a great double act and were looking after me for a couple of days. The original Toxic Twins are Steven Tyler and Joe Perry of Aerosmith, they earnt their nickname by snorting most of Columbia as far as I can gather. However after having roughly three hours sleep on Wednesday night due to my roommate being rather ill I’m not going to give nurses any glib names at all. The chap has had roughly the same surgery as me, but isn’t coping as well. He uses the nurse call button at a drop of a hat, in fact once I called them for him as he was banging on his bed in frustration having lost his call button. The nurses treated him with all the care and respect you’d expect, even when faced with a degree of (limited) aggression on his part. They sat down, they talked to him, they calmed him down, they made sure he was in as comfortable position as possible. All in a nights work, there’s no way these people are Toxic, they’re bloody brilliant and deserve much, much more than they’re currently getting. However the title remains, it’s a good excuse to post a pic of Tyler and Perry in their pomp.

Hopefully “Roomie” will be moved to a single room later on during his stay, he needs it more than I do, and whilst I’d quite like the peace and quiet, my turn will come later in my stay.

I thought I’d give you an idea of how interesting it is being stuck in hospital, here’s the first few messages / questions I wrote down on my pad to show the nurses or Carol :

·         Am I breathing without help? (Nurse) Answer – “Yes!”

·         Feel Knackered (Carol)

·         Neck stiff, and need to use my hand to lift my head (Carol)

·         Can I stand up? (Nurse) Answer – “If you could stand before the Op. you can stand now!”

·         Sorry, just a bit emotional (Nurse, when I started crying for no other reason than I can!)

·         Can you bring in my laptop please (Carol)

·         Do you know if they’ve got rid of all the cancer? (Nurse) Answer – “The bits have been sent to the lab, we’ll know in 14 days.”

·         Do I get wine with dinner? (Nurse) Answer – “Funny man” (Well I think that’s what she said, it could have been prat!)

·         Any idiot can pass an exam, competency is FAR more important (to one of the nurses who’s a student and a bloody good one at that!)

So you can see my first couple of days have been fun packed and stimulating. At least the free WiFi is pretty good.

Thursday, despite the lack of sleep seemed to start off quite well. I saw my surgeon who was very happy with the progress I’ve made so far. She removed the stiches from my throat tube and took it out it I was able to see what they’d done. It was quite emotional seeing up and down into my throat, and a couple of tears escaped again. Then things went a bit downhill for the morning. My nurse showed me how to replace the stoma and make sure its fitted correctly. It was a really strange feeling and made me cough quite badly, bringing up rather unpleasant “lumps”, let’s leave it at that. The rest of the morning was spent trying to settle my chest down and making sure I didn’t cover the stoma with my fetching gown, you suffocate if you do that! Eventually I seem to have got the hang of it, it’s not overly unpleasant after a while, maybe I’ll stick a Youtube video up demonstrating how to insert a stoma where the sun don’t shine.

The physio has been to see me and once my neck drains are removed I’ll be given some exercises to strengthen the muscles, at the moment if I want to lift my head when I’m lying down I physically need to lift it up. She’s also shown me the “Route” which is a lap around the first floor of the hospital, takes about 10 minutes and I should be trying to do it at least 3 or 4 times a day. When am I supposed to catch up on Netflix?

As always I’ve been amazed at the interaction I’ve been getting via Facebook, 99% of it is really appreciated. It’s especially rewarding to get messages from total strangers who’ve picked up on this blog. A few folk from different time zones are following the posts now, so it’s great to know when I’m struggling to sleep in the wee small hours, there’s someone over in NZ or Aus who’s wide awake and happy to chat for a while. The world is becoming a much smaller place.

Carol is being an absolute trooper as you’d expect. She’s dragged over everyday so far to sit with me when I can’t communicate unless I write. I can see she’s upset at times, but she puts such a brave face on things. Me? I just blub! I suspect that Carol is getting a massive amount of support from the Errant Son and Number One Daughter, oh and her other close friends Malbec and Merlot. Anna is back down from Leeds until Saturday, so she came over for a couple of hours with Carol on Thursday afternoon. It was good to see her and to hear that her new job is going well, she’ll be buying a flat cap and a whippet next……

Thursday night wasn’t too bad, my errant roomie was given a sedative around 10pm and seemed to drift off into a coma within minutes. I struggled a bit, but got about 3 hours uninterrupted sleep, then cat napped until roomie decided to boot up his laptop at 6am again. If you can’t beat them…..

I’ve managed to clean my breathing tube twice in the night, much to my delight. Once the nurses are confident I can look after myself there’s more chance of me being moved to a different bay. The breathing tube is now known as Larry, and I like Larry as Larry keeps me alive! – 

I thought as I’ve been in five days now I’d give you a feel of what an average day looks like on Blenheim Ward. The ward tends to burst into life around 6am when the night staff do their rounds dishing out drugs to the lucky patients. I tend to get a dose of paracetamol just to help with any pain. Then there will be the usual blood pressure, temperature and pulse rate checks. The next couple of hours you’re left to your own devices whilst the day shift come on and before the Dr’s do their daily rounds. They tend to wander in around 8.30am and have spent a few minutes with me each morning just checking up on my progress. All going swimmingly apparently. I’ll spend the remainder of the morning alternating between watching Netflix, writing this blog and trying to do a few laps of the hospital as exercise. Carol tends to come in mid to late afternoon, it’s a bit easier to park then I guess. We’ll spend a couple of hours either chatting, or just reading together. Obviously the chatting is a tad one sided at the moment, well after 35 years I suppose it’s about time I let her have her say. After shes left for the day I'll probably try and read for a bit whilst listening to my iPod on shuffle, before the task of trying to get back to sleep comes round again. By this time the night staff will be back on duty and coming round with the injections into my stomach, no idea what they're for, but it seems to keep the staff happy! 

I’ve told a couple of the nurses on the ward that I publish this blog on a weekly basis, and foolishly gave them the web address, so ladies, all of the above is entirely made up and never happened…… and that bit you mentioned about your colleague………… 😊

After 18 months of writing this blog I’ve just about leant to keep a balance between the truth, entertainment and discretion I hope. Scary has read it, but she seemed fine with what I’d written. I really will have to come up with some names for this new lot though as I feel a few of them will become regulars in the next couple of blogs.

Before I published this update I had a brief flip through the last few blogs from when I was told the cancer was back for another battle. So far I think things have planned out roughly as I had expected. In fact, I’d say I’m probably ahead of the game. I’m in little actual pain or discomfort other than from the stoma. My body hasn’t reacted badly to any of the drugs (yet) unlike when I was on chemo and RT last year. The place is pleasant enough and the staff on Blenheim are without exception, wonderful. (I need to remind Carol to bring some cakes in next week, sure they’ll go down well).

This morning my Surgeon, Dr Friendly, as she’ll now be known gave me some good news. One of the drains that I’d got in my neck was removed today, the other will probably come out on Monday. It was a slightly strange experience having about a foot of tube pulled out of your neck, not painful, but a bit weird. The next major milestone will be Thursday 6^th July when I’ll have a swallow test. This ensures that the throat stitching has healed correctly and fluids go to the right place. If this is successful I can then start on proper liquids and hopefully have the feeding tube removed. We’ve set a target date to be home by 11^th July, two days before Carol and I will have been married for 32 years. In sickness and in health, well let’s try a bit of this health lark for a change.

I also had a visit from my CNS Nurse Yun on Friday morning, a great ½ hour chat with her helped ease my mind somewhat. I showed her the blog, the book and other bits and pieces I’ve done since the original diagnosis in 2015, she seemed quite impressed that I’m managing to keep busy and that I’m channelling my energies towards positive goals. She’s mentioned that perhaps when I’m well on the road to recovery that I could share some of what I’ve been up to with the wider Head and Neck community, I’d be more than happy to oblige. As she was leaving she whispered to me, "It's ok to cry"

I’ve warned Dr Friendly that if we don’t keep to the dates above that I’ll have no option but to start digging the tunnel. I’ve already spotted a couple of loose floor tiles on my laps of the floor, I reckon if someone could smuggle me in a pickaxe I could be out of here in a couple of nights, especially if I bribe “Roomie” to play up for the night to distract the guards!! (Opp’s, meant nurses!)

As always, thanks so much for reading.

To be continued……..

#Shoulder2Shoulder