Welcome to the Hotel California.

This will probably be the longest update I’ve written for some considerable time. Sorry, but I’ve sod all else to do at the moment other than watch Netflix or write the blog. There have been a few lows this week, but far more highs. So for once I may be losing on the swings, but I’m winning on the roundabouts….. I am struggling somewhat with names for the people who’ve been so good to me, part of me would like to use their real names, the other part wants to protect their identity and that’s the part I’ve gone through. I hope they know who they are, and I hope they know how much we appreciate all the help we’ve been given.

Saturday 1^st / Sunday 2^nd

Finally a half decent nights sleep with around 5 hours of uninterrupted kip, the most in one go for ages. It was a strange night, all the staff were new to me and it took a while to warm to them, but a few very kind words and a bit of advice from a Polish nurse turned my night around from a weepy wreck to a more positive outlook. She suggested that I asked the Dr’s to move rooms as she could see I wasn’t getting enough sleep and that I was becoming emotional about the issue. So, I wrote a long note, passed it to the Dr. who was on the morning round and he agreed that it would be in my best interests to be moved to a single room. The only downside being that there possibly wasn’t one available until the beginning of the week. So I settled down resigned to spending a couple more nights with Roomie and after the Dr’s rounds had finished I managed to tune into the Lions 2^nd Test down in NZ, catching the last few minutes of the first half and all of the nail biting second period. What I would give to be able to get out for a couple of hours next Saturday to watch the deciding test back at OBR……. Maybe, just maybe I’ll ask if it’s possible once I’ve had my swallow test on Thursday.

Both Anna and Max came over to see me early on Saturday. Anna on her way back up to Leeds and Max giving Carol a well needed day off from the drag to Oxford. We managed to go downstairs to the coffee shop and I sneaked outside for a couple of minutes, oh the feel of fresh air on my face, it was wonderful. We were only off the ward for probably 10 minutes, I needed to get back to give “Larry” a clear, but it was a start, a start to getting back to normality perhaps. 

At around 5pm I was lying on my bed dozing, when in walked another of the wonderful Polish nurses, with the best news of the day. I was moving, there and then to a single room further down the corridor. It was almost like moving house as I settled into my new abode, making it as homely as possible. It’s quiet, it’s away from the nurses station, it’s actually better than some hotels I’ve stayed in too!

The final piece of good news for the day came via a FB message from someone who’s been following this blog via a mutual friend. It turns out that her father had RT and Chemo, then a Larry fitter about 3 years ago. I picked and picked at her brain for how he’s coping, can he eat, drink, talk? The answers are basically yes to all those questions. She was kind enough to pass on his email address to me, so when I’m out I’m going to drop him a line and see if we can meet up for a chat. Apparently there is a monthly meeting of “Larry” wearers organised via H&NC RBH, I get the feeling I’ll be making a guest appearance. I wonder if it’s like AA. Do you arrive and say,  “Hello, my name is Paul, I’ve got a Larry?”…… I wonder what the collective noun for a group of Larry’s is? Perhaps a flock, or how about a Grayson?

The difference is having a single room is amazing, I settled down to sleep around 9.30 on Sunday evening, woke at 10.30 for an injection, again at 1am to clear Larry and then slept straight through until 5.30am. Waking up for the first time in a week feeling vaguely refreshed was superb. A full strip wash and total change of clothes set me up for the day. One side effect of the Op. is that I’ve temporarily lost my sense of smell, so I’ve probably been rather “High” despite my best efforts to keep clean, it’s a challenge when I can’t have a shower or bath yet as I’ve still got a drain in.

The Dr. I saw on Sunday morning is probably a rival for Cool Dude back at RBH, a very personable chap who was quite happy to answer any of my stupid questions. My question on Sunday was could I have the drain removed yet? His answer was “No”. Oh well….. He did warn me that the four days running up to the swallow test on Thursday will be very boring for me. Other than getting the drain removed, and hopefully the staples in my neck too, there’s not a lot else they can do with me. There’s only a certain number of episodes of House of Cards you can watch in one day, only a certain number of book chapters you can read, only a certain number of songs you can listen to on an iPod, before boredom sets in big time. So it’s been a case of trying to keep as busy as possible in as many different ways as possible.

A pleasant and relaxing afternoon was spent with Carol. We managed to get outside for a few minutes which was great, albeit a tad hot and I’d imagine getting the stoma burnt would be a pretty stupid thing to do this early on in. Later in the afternoon two friends we originally met from rugby popped in, they’re currently walking the Thames, all the way from London to its source. This weekend was the Oxford leg of the trek. I’m not entirely sure if they meant to visit me, or actually needed to go to A&E as they were both limping from their walking. Their names are, and I kid you not, Peter and Jane (That’ll mean more to some of the blog followers who’ve come via a certain FB page).

Monday 3^rd

Another half decent night’s sleep overnight on Sunday, only interrupted when the resident Italian Male Nurse crashed through the door to my room, missing his footing and making a rather spectacular entrance, I woke up quite quickly at this point. Sergio has been great with me so far, the patience of a saint in front of my silly questions, and really calls a spade a spade which is what you want. There’s no point in having false expectations of what could happen, you need to know what will happen. “Promise Long, deliver short” as my old Sub Manager at Lloyds Bank would have said. Sergio has been on the ward for about 5 of the 7 days to date that I’ve been an inmate. Getting to know the nursing staff is important to a patient, it allows trust to build up. 

One of the many key indicators that I’m able to go home will be how many times a day I have to clean Larry out. A healthy person (Not sure how healthy you are if you’ve had your voice box removed, but hey ho!) will probably change the filter between 3 to 5 times. On Sunday I had to change my filter 7 times, so a way to go yet, but encouragingly, for the first time I didn’t need to replace it overnight. Luckily (??) I’ll now get free prescriptions for the rest of my life due to the stoma. I’ve no idea what the cost of the filters is, but I doubt they’re cheap. I was reading up on the interwebby that it’s possible to buy special filters to use on the beach so that sand can’t get into the lungs, so I’ll be looking into that in more detail when I escape. Carol needs another holiday, and who am I to deny her that right?

My mind is in a better place as the week begins. At the time of writing I’m not half way through my stay yet, but the back is well and truly broken. If I can keep my emotions in check and look to the positives I’ll be fine. I don’t want to start looking too far ahead. I’ve small targets…

·         Get through the swallow test.

·         Have some solid(ish) food.

·         Have a cup of tea with two sugars (I don’t normally take sugar)

·         Get the feeding tube removed.

·         Get home.

·         Celebrate 32 years of being married to Carol.

·         Get up to FB7s for even a short time.

These targets spread over the next 10 days or so, I’m not going to look any further ahead.

A fairly long meeting with the Dr’s on Monday morning was all positive. He agreed that the final drain can now be removed which will help with my mobility. The staples in my neck will be removed on Thursday. Normally they’d come out after a week, but as I’ve had RT in the past the healing process can take a bit longer. So Thursday was going to be a full on day with Staple removal and Swallow test. I also had visits from the Dietician who’s going to up my daily calories to 2,500 and add in some fat content. She’s concerned that the weight is still dropping off me. She also appears to hold one of the keys to me getting out of here, so I’ll do whatever is needed. The final official visitor of the day was the Physio, she’s given me a course of 12 exercises to do to get my neck and shoulder movement back into some sort of order. Having had the muscles cut away means that at the moment it’s very painful to move my neck either up and down or side to side. The exercises are supposed to be done three times a day, I completed four sets of reps on Tuesday and really felt it, so I think I’ll stick to the advised three from now on in. My right shoulder has dropped slightly, again from the surgery, so I’ll need to make sure I work hard on that to get it back level. It’s damn sore when I walk for some reason. Unfortunately the Physio’s aren’t on the ward everyday so I’ll just have to wait until I see her again to get some specific exercises for the shoulder.

As usual Carol came over for a couple of hours in the afternoon, we chatted, read, listened to Wimbledon and I slept for a while. I was then a total and utter ass and I hated myself.

Another visitor from the world of Redingensians arrived later on Monday afternoon. Chris was quite happy to give me an all over bed bath, and after the Dr. making a total pigs ear of putting a new cannula in I could probably have done with one, but I gallantly declined. It was good of him to take the time to get over to Oxford and spend an hour or so trying to work out what the heck I was trying to say 😊 Chris is one of those sort of people who’s more than happy to put himself out for the benefit of others. Over the last couple of years I’ve grown to really trust Chris, he seems to have an inner feeling as to when things aren’t going great, and then saying just the right thing at just the right time.

Tuesday 4^th

I really struggled to sleep overnight, it was a warm one and for the first time since my Op I was feeling very thirsty in my mouth. I must have been up 4 or 5 times just to wash my mouth out with water, it was so tempting to take a quick swallow to quench the thirst. I discussed with Sergio last night as to whether I can have a shower today. It’s been a while since my last one and I must be starting to smell a bit by now despite my efforts with wet wipe strip washes. He’s agreed that it should be ok and briefed the day staff at handover. I had to wear a special bib so no water went down my stoma and into my lungs, but as I’ll need to do that for the rest of my life anyway, it was good to get used to it before going home. The shower was bliss…… better than sex, and it lasted longer 😉

My nurses on Tuesday were the original sister who I didn’t take to on day one as I was a moody bugger who just wanted things done. I should know by the age of 53 that my first impressions are usually rubbish! On Tuesday she spent a fair amount of time with me checking up on my progress, making sure I’m as independent as possible, and getting me ready to go home as quickly as possible.  She commented on how much better I looked than the last time she saw me, and to be honest, apart from some swelling around my jaw line, and a sodding big hole in my throat I don’t look too bad. Carol has bought in some polo tops, so when I’m not on the feeding machine I can wear roughly what I want so long as I keep Larry open to the elements. It’s amazing how good it feels to be wearing your own clothes and not hospital issued Jim Jams. Another step closer to normality, another step closer to going home. The other nurse is the student who seems to have worked every day or night since I was admitted. I’m not sure how much longer she has to complete her degree, but she’s going to make a darn good nurse. Little things like checking that the hospital issue pyjamas have buttons on them (most don’t) make the patient feel like a human being, rather than just an admission number. Making a point of putting a head round a door and saying hello…… Life skills that can’t be taught.

I’m beginning to get somewhat obsessed with what my first proper meal is going to be. I don’t mean whatever slush is pushed down my throat if I pass the swallow test. I mean the first meal I can cook myself when I’m home. At the moment I’m tossing up between either a fish pie or a quickly knocked up lasagne. Max gave me a small chalk board for Fathers Day, I was originally going to use it for communicating but thought it might get a bit messy having to wipe it down after each message. So it’s now sitting above my bed in the hospital acting as a menu board of the food I’d like the staff to bring me. So far we’ve had…… Bacon, Eggs and Black Pudding, Lasagne, Toad in the Hole, Liver and Bacon, Steak and Kidney Pie, Roast Pork and crackling…….

Wednesday 5^th

Sleep just wouldn’t play ball overnight, I’ve far too much on my mind ahead of Thursday and the “Swallow” Test. Sergio spent a while on Tuesday evening going through my discharge plan with me. Again, whilst the CNS Nurses have the final say, if I can pre-plan slightly I may get ahead of the game. It was good of him to do that for me. That’s two nurses now who’ve started to look at the escape plan with me, perhaps they just don’t want to feature in the blog that much.

It was a pretty quiet day all in all. Almost like Christmas Eve, waiting for the big day tomorrow. One “Amusing” episode was when I was visited by a young Dr. I’ve not seen before, he was about 4 foot tall so when he asked me to stand up so he could look at my neck……. He then asked how I was getting on with eating, despite a feeding tube sticking out of my nose! I felt a bit like they’d sent in a student to see how he’d interact with a real live patient, not sure he’s passed that module I’m afraid. He culminated his visit by poking the drain holes and asking if they were sore……

The afternoon, I’m afraid, isn’t worth describing in any detail here. I wasn’t in a great mood, the treatment I received wasn’t what I’ve come to expect, mistakes from all parties. Thursday was waiting on the horizon.

The highlight of a very low day was getting a text from Anna confirming she’s got a 2-1 in her degree from Lincoln Uni. She’s the first Clark to ever complete a University Degree. Carol, Max and I couldn’t be more proud of her. She’s worked so hard to achieve her goals and has turned into a very confident, capable and lovely young lady. (She was a horrible baby) 

Thursday 6^th

Two acts of kindness and my first ever go with a sleeping tablet meant that I woke up on Thursday morning in a far more positive frame of mind than when I left Wednesday. A decent shower, fresh clothes and I was ready for whatever the swallow test was going to throw at me.

Prior to the test though one of the young Dr’s who’s been on the ward rounds each morning I’ve been in asked if the Rams shirt I was wearing was from a local club. Turned out he’d played for Oxford Quins for a couple of seasons prior to packing in due to injury. The conversation turned to the Lions and my plan to escape for a couple of hours on Saturday to watch the match. He reckoned it was a good idea and would pass on the plan to Dr Fraser, my surgeon. Dr Fraser arrived by my bed within about 20 minutes, and confirmed that if I’ve passed the swallow test then she would be more than happy for me to have “Day Release” on Saturday – OBR here I come 😊

I was booked to have the swallow test at 2pm, by 2.20pm I was still on the ward and getting stressed to say the least. Eventually we made our way down to the x-ray Dept. where I was asked to stand on a shelf like thing which reminded me of the ramp Virgil used to get to Thunderbirds 2. Three different angles were taken whilst I swallowed a disgusting liquid. The outcome is that I’m water tight!! I was escorted down to the depths of the hospital for the test by a porter and an Aussie nurse from the ward. It was only when we were finished that we realised we might not know our way back to the ward. I was happy enough to just wing it, what’s the worst that could happen. However the x-ray technician gallantly offered to guide us back to safety, I have the feeling that he’d taken a shine to Sheila 😊

When Carol and Max arrived we took the trip down to the coffee shop where I sipped slowly on a bottle of Buxton, it tasted like nectar. The next step will be to progress to hot liquids, namely a cup of tea with two sugars! Due to the delay in going to have the test done it’s meant that I’ve missed seeing the Speech Therapist today, which means the tube stays in for another night. Oh well, C’est La Vie. 

However there were two final bits of good news to finish the day off. The cannula has now been removed once and for all, and all the staples are out and my head hasn’t fallen off. There were close on 50 staples in the neck, 49 of them came out with no problems, all I could feel was a very slight tug on the skin. The 50^th wasn’t going to come out at all, it liked my neck, it felt at home, so why on earth should it move. The poor nurse who’d done such a wonderful job on the first 49 was struggling against this little bastard. After a good 15 minutes of pulling, prodding, poking, sniping and swearing (by me) the sod finally gave up the ghost and popped out like George Michael on Hampstead Heath. The scaring looks much better than I expected and so long as I continue to make sure I look after it I don’t think it’s going to be quite as obvious as I first envisaged.

A friendly nurse (Is there any other sort?)  was looking after me on Thursday evening, she confirmed that the wheels were being put in motion for me to go for good. The District Nurse will be asked to visit once to make sure I’m coping. The Ambulance Service will be advised that I’ve got a Larry. My GP will be told and asked to put on bulk prescription all the everyday stuff I’m going to need to survive. God bless the NHS.

Friday 7^th

My days tend to start around 6am most mornings. I sit and write part of this blog whilst listening to the radio, usually BBC 5Live. This morning they were asking for reasons to feel confident ahead of the Lions test tomorrow, so I texted in that the Surgeon had agreed I could escape for a while, that’s got to be a good omen. Apparently the text was read out, but by that time I was on my House of Cards daily fix.

If today was sponsored by a brewery it would be a Carlsberg day. My surgeon came to see me first thing in the morning. She was very pleased with the way the swallow test had gone and was now looking at me to start eating. She then threw in the most beautiful curve ball. The pathology results are back. They confirm that the cancer had started to eat away at the cartilage in my neck, much more than was shown on the scan, so the Op. was totally necessary to save my life. The pathology results also show that she got ALL OF THE BASTARD OUT  - I’m cancer free.

The speech therapist swiftly followed, so I was still pretty emotional when we started on the next stage of recovery. She produced a rather unattractive looking fruit puree for me to try and surprisingly enough I could taste it. Ok, I didn’t really like it, but I could taste. Next up was the process of starting to learn how to speak, a few tweaks to Larry and I’ve managed a few proper croaks, steps in the right direction, but this is going to be a tough one. By late afternoon I’d managed “Hello”, “Bye bye” and “Of feck” – not sure I need much more in my vocabulary.

My room was beginning to be like Piccadilly Circus at rush hour. My very kind Polish nurse had noticed I was a tad emotional and called in the nurse who’s probably looked after me more than anyone else so far, before I had a chance to explain that my tears were of happiness in walked Yun the CNS Nurse…… blimey, can a man get no peace and quiet? 😊 at this point I hadn’t even had a shower and was still dressed just in my Rams shorts and a smile.

My lunch duly arrived spot on midday, my dietician has said if I can eat all lunch and dinner then the feeding tube might be removed this evening. Well, lunch was a large bowl of mushroom soup, heated to roughly the same heat as the earth’s core. Main course was supposedly fish pie, but I wasn’t convinced. Pudding of crème caramel and ice cream. All at portion sizes that you’d expect a healthy bloke to eat. I reckon I got about ¾ of the way through the lot of it before having to admit defeat. Hospital food has improved since my last long stay when I was 19, but it still isn’t the most appetising.

Yun reappeared in the afternoon, she’s like a stealth nurse, I never hear her coming. We ran through loads of safety related stuff, all very common sense but necessary to know. I’ve various forms to fill in when I get home, but it will be when I get home. I just want to stick my feet up and relax for the rest of the afternoon with TMS playing in the background.  

I know that this week’s writing has been “All about me” but there’s so much more to it than just me. Carol has been over every day and has put up with me being in a shoite mood at times. Max has been supporting his mum big time, and had to see me at some pretty low points. Kids shouldn’t have to see their parents in pain. Anna is 150 miles away, and isn’t able to be hands on, but she’s speaking to Carol daily and sending me links to fluffy cat videos on FB to cheer me up. They are my family and I couldn’t ask for a better bunch to be on my side.

As always, thank you so much for reading this blog. I really do appreciate all the comments that come in either via the blog or by FB.

To be continued……..

#Shoulder2Shoulder

PS – To my friends Graeme, Claire, Shaun, Eileen and Craig who are down in NZ. Please scream until you sound like me for that one final win 😊