It's Saul Goodman 

The image at the opening of this blog is the first to show the stoma without a base plate or HME, only taken 12 month to post. Max took the picture for me and I edited it on Lightroom.

Ok, I know I said I wouldn’t be posting another blog and was passing the baton over to Penny, Neville and Hendricks Pinkman to continue writing. There was a slight flaw in my cunning plan, in that Penny, Neville and Hendrick Pinkman are workshy lazy slackers who’d rather just doze in the sun than sweat away at the keyboard. I’ve also missed writing. 

Let’s get the obvious “Health” issues out of the way, I’m fine. I’m nowhere near 100% but I’m 100% better than I was this time last year.

It’s the first anniversary of me getting the snip, Facebook Memories remind me each morning about just how tough it was in late June, early July 2018. There are days I wake up and feel low and in a bit of pain, then I look back at the memories and realise just how far I’ve recovered in the last 12 months. One of the simple ways that I can manage my recovery is in my monthly order to Countrywide for my medical supplies. In the early days I’d use probably four or five HME filters in a day and usually two base plates. Now an HME lasts a whole day, sometimes a day and a half, whilst base plates are going for two days without being changed. There is still the odd day of blowing a base plate or having to change the HME a couple of times in the day, but these are rare. The stoma is still looking pretty good and takes little looking after other than regular cleaning. My monthly bill to the NHS has probably halved in 12 months.

We’ve had quite a busy time of things since the last update. We dragged Nev up the M1 to see No.1 Daughter Anna in her house in Leeds. It was a good couple of days, an awfully long time since I’d been back up to my old birth county, I’m pleased to say that Electricity and WiFi seems to be widely available. Seriously, it was nice to see Anna and Tom settling in to domestic bliss and getting on with their lives. Neville enjoyed seeing them both again and took to the Yorkshire countryside really well, he struggled slightly understanding the locals though. 

Whilst the 15 a side rugby season is on the summer break, the 7s season is well underway. Max is playing for the Badger 7s again this season, and I was proud to be one of the shirt sponsors for their new kit under the S2S Photography guise.

A busy three weeks on consecutive festivals started with Milton Keynes where the Badgers probably were a bit rusty, moved on to Newquay which was sublime and finished in Abingdon, a week too far perhaps? Milton Keynes was a fun festival, played at a club I hadn’t visited before. The Badgers played well in three of their four pool matches before losing to a very well drilled side. I took my leave at that point and drove home as I was feeling a tad jaded.

Carol and I took the chance to have a long weekend down in Porthcothan to coincide with the Newquay 7s. The idea of camping in a tent didn’t really appeal so we hired a caravan at Canevas, our usual stopping point. We traveled down on the Friday morning, to arrive at Porthcothan on a truly stunning lunchtime, not a cloud in the sky, 23 degrees, total heaven. We’d arranged to meet Sidney and his assistants on the beach that evening so that he and Neville could get to know each other on neutral territory. When they’d meet previously in March it had been at Sidney’s house and he was unsurprisingly a bit territorial. This time however, after a couple of “I’m still older than you Neville m’lad” type grunts, they got on really well. Neville following Sidney all over the beach and generally learning from the master. A quick pint turned into two hours in the pub above the beach chatting away whilst the dogs played together. It was one of the nicest days we’ve had for a long time. For any new readers to the blog Sidney is Neville’s elder brother from the same father. He's the one on the right in the photo below. 

Carol dropped me off at the Newquay 7s the next morning as supposedly dogs weren’t allowed on the school grounds. One of the first things I saw were two couples walking their dogs through what in effect was public land! A mental note was made to give Carol a ring and get her to bring Neville over later in the afternoon. The Badgers had been “bumped” into the Elite group of teams which meant they had to face three invitational teams. Shredded Ducks, Wooden Spoon Marauders, and Doom Platoon are made up of players specifically invited to play for the teams and are generally of a pretty high standard. This was born out all too well on the Badgers who took stiff beatings from both the Ducks and Marauders before meeting The Doom Bar team. Doom Bar were probably the dirtiest, most undisciplined bunch of thugs that I’ve ever had the misfortune of watching play 7s. They were more interested in putting cheap shots in rather than playing rugby. It was no surprise at all when the first of their two red cards appeared in their stuffing by the Badgers, a late and uncalled for sliding tackle on a player who was already on the ground. The Badgers went on to win all their remaining fixtures on the day, meaning they ended up as the winners of the Bowl.

 

The Senior Badger players then nominated their Badger of the Festival, it was Max J I’ve watched him play 7s now for the past three summers, this was by far his strongest performance to date, it also happened to be his 20^th birthday on the Saturday.  I’m not sure how much, or we even what he drank on the Saturday night, but when we picked him up on the Sunday morning to go to the beach and then an early lunch he didn’t look overly alive J It was a good three day break, helped by the weather being glorious. I know I’ve said it before, but if you could guarantee the weather I’d go to North Cornwall every year for my main holiday. Neville loved it too!

As a footnote, the Newquay 7s were sponsored by Doombar (The St Austell’s brewery brew), but there was no bar on site, and probably the worst burger I’ve ever tasted on sale too. The players love the festival due to its location, not sure I’d bother going as a spectator if it wasn’t so close to Porthcothan though.

The final of the three in a row was held at Abingdon RFC, another club I’ve not visited before, despite only being 40 minutes from home. What a lovely club it was too. Lush green pitches, despite the heatwave, friendly bar staff (It had a bar!!!!) and an edible and enjoyable burger, just what the average rugby supported wants. The Badgers were a tad short of players and an early injury to the expectant father meant they were in need of some subs. Luckily Max, who’d given this one a miss, was only up the road in Oxford with Laura looking at Uni’s. A quick phone call, a taxi journey which seemed to take in most of Oxfordshire and he’d arrived to take to the field. The Badgers played some outstanding rugby, losing a close match to the eventual winner, The Royal Navy 7s and going down to another very good invitational side in the Semi Final of the plate. I got the impression that players who’d played all three weeks on the bounce were looking forward to a break before the Fat Boy 7s at Abbey RFC. The Rams ladies side, the Sirens also took part at Abingdon, I ended up shooting between the two pitches the Badgers ans Sirens were playing on, over 800 shots taken in the day. 

One of the downsides of the three consecutive weeks of taking photos was the damage it had done to me knees. I was once told by a photographer who I really respect that you can’t be a good sports photographer if your knees are clean. I tend to kneel either on one knee, or more often than not, on both knees so that I’m shooting low to high to get the best image. By the time I’d finished at Abingdon I could hardly walk and the next few nights were agony with a burning sensation inside the knee joints. I mentioned this to Sian the Physio who’s been treating my shoulder and she’s given me some exercises to try and strengthen the joints and suggest I use Ibrofen gel to ease the pain. I think though that the years on abuse my knees have suffered are finally catching up with me.

Now to the part of the blog that I reckon most people want to read. How is the one, the only, the hairy, the Neville getting on? The simple answer is he’s having a ball. Still very much his own dog, and still a puppy, but the training and obedience are coming along pretty well and he’ll usually come back when called…………. Eventually! He’s had his first train ride, a short hop from Tilehurst to Pangbourne 

which seemed go well. His first visit to the groomers, hardly any blood spilled and his first real play with Penny the cat…………. Ok, when I say play, what I really mean is Neville, tail a wagging, trying to play with Penny and Penny, hissing for England, trying to scar Nev’s face for life, but believe me, it was progress. Regular sufferers will know that the Kromis breed is pretty rare in the UK, there’s only 50 of them in the whole Country. In September it’s likely that up to 10 of them will be meeting down in Kent, including the whole litter Neville was breed from, that’ll be 20% of the entire countries population of a breed meeting up at one point. I’d hazard a guess that no other breed is able to say that. We’ve got two months to persuade Nev not to behave like a teenage delinquent in front of his extended family, we’re doomed I tell you, doomed!

Work is trundling along. I’ve taken on a bigger case load following one the team being transferred to another Dept. This means I’m back up to the levels of cases to manage that I was at prior to December 2015, it keeps me off the streets, but I do worry about the customer interaction, especially with face to face meetings. To date I haven’t had an incident of the valve blocking or a base plate blowing whilst I’ve been with a customer, it will happen at some point, and frankly I’m dreading it. The whole interaction with the public or even my friends is beginning to hang over me.

Recently I’ve left social meetings early as if there’s lots of background noise, say music or loud talking, I have real problems in making myself heard, this in turn makes me really frustrated. It’s easier to make my excuses and go home, rather than standing around looking like a prized plumb. I can’t think of a solution to this challenge as my voice won’t get any stronger than it already is. I seem to be ok if we’re out in the open air, it’s confined spaces that cause the problems. I’m due to see the Consultant next month so will perhaps as to see the SALT Team and see if they have any ideas to help the volume.

I’ve never been the biggest football fan in the world, but I’ve really enjoyed the majority of the games I’ve watched from Russia. I started to post Instagram pics of Neville watching the matches with me, with quirky little captions, such as “Neville refuses to support Nigeria until the Prince sends him his promised £s”, you get the picture. I do have to be careful what I post though, as after Germany were knocked out I posted Aug Wiedersehen Pet……….. only to get messages from friends in Germany asking if Nev had died…….. Opp’s J  England performed well above my expectations, to make the last 4 was amazing. They perhaps could have been two or three goals up by half time against Croatia, but it was not to be. Really looking forward to the 3^rd / 4^th place playoff match on Saturday, said no one, ever.

For those who’ve read my blogs in the past you may remember Gill Sims and her Peter and Jane blog on Facebook. Gill published her second book yesterday, it’s called Why Mummy Swears  I’m sure it’s just as funny as the first one, but don’t know whether smoothies will make another guest appearance. 

Today is 33 years since Bob Geldof urged us all to stay in, not go to the pub and give him the f**cking money, it’s also 33 years since Carol and I were married. Max is taking his girlfriend Laura up to Leeds to visit Anna and Tom, so Carol and I are off for a romantic meal for two at Nino’s. Nev and Penny are under strict instructions to behave whilst we’re out.

No idea when I’ll blog again, but as always, thanks for reading.

Just passed 160,000 words J

#Shoulder2Shoulder

& then it was over, we said our farewells

Our week on Fuerteventura is now becoming a distant memory and the tan is fading quickly. It was another good break, albeit this time the weather was a bit changeable and genuinely cold at night, especially in the wind. It was a bit of a shock to open the curtains in the morning to be welcomed by a bank of clouds.

Out of our seven days six were bright and warm by 11am. I doubt if the temperature got above 25 degrees at any time, but that was fine for us. I know I call our airline of choice “SleazyJet” but I shouldn’t really complain. They took off on time and landed on time for both legs of the trip. On board was fine, both times having a spare seat so we could spread out a bit, more on the return flight later on in the blog. When we arrived at Fuerteventura airport we were due to be met by transport from the hotel which I’d pre-booked, however there was no sign of anyone holding up a “Welcome Mr Clark” board. After hanging around for 10 minutes of so I emailed the hotel to get an immediate reply saying transport would be with is within 10 minutes. 20 minutes later and I was becoming more and more angry. We were just on the verge of jumping into a taxi and giving the bill to the hotel when are driver eventually turned up, full of apologies as apparently there had been a mix up with the bookings. We mentioned this episode when we checked in with the hotel manager, three hours later a knock on the door brought a bottle of Cava and a plate of fruit with the compliments of the hotel.

By this point Carol had knocked by two Hendricks on the plane, a large glass of white wine whilst waiting for our room to be ready and was now faced with a bottle of fizz to demolish. She stood up well to the task…. A game old bird.

Our days were spent cycling to the dunes, soaking up some rays, cycle back for lunch. Carol would then go off and use the hotel Spa facilities whilst I explored a bit more of the immediate vicinity of the island on my bike. There was a convenient bar at roughly half way house where I stopped most days. Well, when I say bar, it was more like a hut next to the harbour, but it sold nice cold beer. The woman that ran it reminded me a bit of the old wench from the Blackadder series, she certainly looked well worn, however despite the fact that she spoke no English and my Spanish is pretty poor we managed to communicate. She’s got an old plastic shopping basket next to the hut, in which sat a pigeon. By the power of sign language and nods I worked out that she was nursing it back to health, no idea why as there were hundreds of perfectly healthy ones around she could have chosen from J I stopped at her hut I think five times in total and each time there was a welcoming smile. That’s possibly another advantage of having a Lary, it makes you recognisable. I’d hazard a guess that on the island that week I was probably the only Lary wearer. It was the same in the bars and restaurants we frequented, once we’d been in the once we were remembered. Not sure that’s a good thing or not J I enjoyed my cycling exploits however I had to stop fairly often as the filter wasn’t letting enough air through to my lungs when I was trying to breath hard. When I got back home I mentioned this to SALT Caroline who’s given my some special filters to try out that are designed to let more air through if you’re exercising. Regular readers of this blog may remember that when we went to Gran Canaria last year I suffered from the fine sand getting into the filters and finding its way into my stoma, I’m pleased to say, that with one exception, that didn’t happen this year, maybe the sand on Fuerteventura isn’t quite as fine as that on Gran Canaria?

Corralejo has the usual tourist type bars and restaurants as well as the more traditional Spanish ones. The area around the harbour, with the wonderful views across to Lobos and Lanzarote are the most popular with tourists, but also the most pricey. We had one meal in an Italian restaurant of the harbour which was probably the worst service I’ve had in a number of years. Rude, disinterested, and generally crap. I can’t remember the last time a waiter didn’t ask if we’d like to taste the wine before pouring the glasses. This one didn’t even bother pouring, she just opened the bottle, plonked it down on the table and disappeared. In and out in 35 minutes, zero tip left and a 1* Trip Advisor review written when I got home. I reviewed all the places we ate in and this was the only 1*. In contrast at the back of the town there was a tapas bar called Oscars that we’d used in previous visits. This became our restaurant of choice for evening meals. It was always busy, generally with Spanish voices which seemed to suggest it was authentic. The food was based largely on fish which was fine by us, but with the added bonus of some goat dishes. Now I’d never eaten goat before, but the slow roasted goat I had was sublime and served with a degree of theatre too. Oscars didn’t have a wine list, they just recommended which ever local wine they felt went with your order. We were never ripped off on the bill from what I could see, with bottles ranging from €10 to €17. I think I could probably eat tapas as my food of choice for the rest of my life, being able to order small and varied dishes works perfectly with my current eating abilities. I just need to make sure I check what’s actually coming out as a couple of times we ordered dishes which arrived with Canarian potatoes when we’d also ordered them as a side dish, carb overloads! We’d planned on eating at Oscars on our last night and had even delayed having seafood paella, however we should have checked. Along with a lot of the more traditional places Oscars was closed when we arrived on Sunday evening. Luckily we found another decent place to finish off our food journey with a decent paella. 

We tended to finish our evenings at the Rock Island Bar, a very small venue which hosted various acoustic artists. It’s got a very laid back vibe and is the perfect way to wind down from a hectic day of sunbathing, eating and drinking. We saw the same artist on two nights, Daryl Kirkland, who was pretty entertaining. His party piece was to play the two best songs about London (In his opinion) the first was Waterloo sunset by the Kinks, and the second………………………….. Feed the birds, from Mary Poppins, an inspired choice, but I guess you had to be there to really appreciate it.

The main act we’d hoped to see whilst we were on the island were Gary and Dave. Gary is co-owner of the bar and Dave is Dave. They were supposed to be playing on Friday night, but when we arrived we were met with the sad news that Dave had the squits and couldn’t perform. This is the sort of music Dave and Gary usually played - Dave 'n Gary   The replacement act was a chap called Andy, who was frankly a disgrace. His “Jokes” bordered on the offensive, he couldn’t sing and seemed pissed. We left after 10 minutes. The next time we met Andy was on the 10.50am flight from Fuerteventura to Gatwick. He arrived on board pretty late, staggering to his seat in 3F, ie the window seat in the row we were sat in. He announced in a loud and slurred voice that he was desperate for a wee! The flight crew let him use the facilities whilst others were still boarding as it was obvious he was going to be a pain in the bum. His wife, who was a caricature of a fading rock stars long suffering wife……… cheap gold bangles, badly dyed blonde hair, tight jeans, plastered makeup, you get the picture, commented that whoever he was sitting next to would have a fun flight as he was already pissed. He emerged from the toilet, swayed down the aisle and asked me if he could sit in my aisle seat as he might need to use to toilet quite often, I declined and told him to sit down, in his seat, shut up and not to annoy me. Luckily the aircrew ID’d him as a total twat quite quickly and moved him and mutton further back in the plane to an empty row of seats, much to my appreciation and those sat around us. I had the last laugh as he’s put luggage up in the overhead lockers before being moved. On landing I refused to move to let him have access to his baggage before we disembarked, he was huffing and puffing to his full height of five foot fuck all and trying to push pass those in front of him so he could get to "His Seat"! A nasty piece of work all round.

One of the challenges for the holiday was to give Mr Fox No. 19 a new name that suited his character. Carol had booked herself in for a full body massage and facial at the hotel spa, so I took foxy off for a cycle around the town and down towards the windmills.  We stopped off for the necessary beers and discussed the matter in great depth, before we came up with the new name of Hendricks Pinkman, or HP for short.

We felt that as Carol had been doing her best to put Hendricks Gin into the FTSE 100 by her consumption and that I’d just finished watching Breaking Bad (Again!) that the name fitted perfectly, ie the fox was a gin soaked meth’s cook! 

All too quickly the week was over and it was time to head back home to Max and Neville. The welcome from Neville when we got back home had to be seen to be believed, - ..... and it's hello from Neville Penny of course was nowhere to be seen and unlike her she was still not back inside by 10pm, we were starting to get a bit concerned. Carol opened the front door about 10.30pm and in stoated Penny, head held high in that “Oh, you’re back are you?” pose. Nev was licking and jumping and almost wee’ing himself.

The week back was a mixture of work and hospital appointments. I went to see Sian at the Physio Dept. Again my movement had improved, despite not doing the prescribed exercises on holiday. Sian reckoned that the cycling may have helped as its putting pressure through the shoulder via the arms. Another new set of exercises prescribed to work on the scatula muscle in my right shoulder, hopefully a few more degrees of movement will be seen prior to my next appointment.

Thursday saw me rocking up at ENT Dept for my regular appointment. It was 12 months to the day that Cool Dude had told me that “It” was back and I’d need to have surgery to remove the bastard once and for all. Nowadays I turn up with no real qualms. I know the appointment will probably run late, I know I’ll be in and out in five minutes flat, I know that so long as there is no CNS Nurse sitting with the Consultant that I’m still ok, I know that the NHS won’t let me down. As per usual I arrived about 10 minutes before my appointment, the receptionist knows me well by now and never asks me to check in, it’s just a case of “Hello Paul, take a seat” – Another example of the Lary being recognised perhaps? I was called in to be weighed after five minutes, 86.7kg, my heaviest ever, perhaps time to start curtailing the carbs? About 20 minutes after my appointment was due I was shown in to see Mr More Scary the Scary, he commented on how well I was looking and how strong my voice was sounding. He reckoned on a scale of 1 to 10 my voice was an 11 (I think he’s a secret Spinal Tap fan!) No “Up to nose and down the throat” this time, just a quick look at my stoma, which apparently is looking good. He’s asked me to get a blood test to see what my thyroid is up to (Having a party I’d imagine) as it can be damaged by the surgery and RT, this could be a reason behind my lethargy, other than that he’s now happy to see me every three months unless I feel the need to be seen beforehand. This is the first time since December 2015 that I’ve gone onto Quarterly Reviews and is a major step forwards for me. I left feeling pleased.

Friday night was the annual Rams End of Season Ball, held at a hotel in Reading instead of the Old Bath Road ground as it’s become so popular. There was a lot to celebrate this season, and celebrate we did! It’s a Black Tie and Ball Gown affair, in the past I’ve always struggled to get my bow tie done up properly, for obvious reason I didn’t have to fret about that this year. As always, it was a cracking evening, however I struggled with my voice. My friends know that I haven’t really got a volume control anymore and in a noisy atmosphere it’s difficult to make myself heard. The evening’s presentations and prize giving ended about 10pm, not long after that Carol and I made our excuses and left the debauchery to start in our absence. I was a bit upset to be leaving so early, but I knew I just wouldn’t have coped for much longer. Congratulations to all the winners of awards, all massively deserved, especially Andy and Janette for being awarded their Honours Caps. I was awarded mine back in 2013, one of my proudest days, I even went to bed wearing it, much to Carol’s disgust.  

& it's Goodbye Redingensians, hello Rams J

Another blog comes to the end, the 101^st since I started publishing in January 2016, and as far as the current format is concerned this is the final one I’ll be writing for a while. However, Penny, Neville and Hendricks Pinkman will be adding their thoughts on everything from which tastes better, fox poo or manure? To how many times Nev can poke Penny in the bottom before his nose is scared for life!

It’s been a blast and I’d like to thank everyone who’s supported the Clark family through the last couple of years.

As always, thanks for reading.

#Shoulder2Shoulder 

You Spin Me Round.

The work laptop is switched off, out of office is switched on. The work phone is also switched off for the next ten days. I’m publishing this blog a couple of nights before Carol and I get up way before the Sparrow cracks his first fart, to make our way to Gatwick Airport and our early morning flight to Fuerteventura. Hopefully a week of sun, sand, cycling, vat loads of gin, the odd rioja and a pile of tapas awaits. We both need this holiday. In the last two plus years Carol has put up with a whole shed load of crap, I’ve rarely seen her cry, she’s been stoic to the extreme. This holiday will be about pampering her, supplying her with drinks on demand and sending her to the spa each afternoon. It’s roughly 1 year ago that I was told that cancer was back and that the only option was to cut out my throat. I can still speak and I’m still learning that every day will bring a challenge. It hasn’t been easy for any of us. There are times when trying to speak is just too much effort, so I stay quiet. There has been the challenges of valves leaking like sieves which have made me feel very depressed. I’ve learnt that taking my HME out, and blowing a large amount of gunk into a tissue may not be pleasant, but it is necessary. I’ve learnt to ignore the stares on the train, in the café, walking around town.

I’m still alive.

Not a huge amount has happened since my last update which I guess is good. Rams finished their season in third place, their highest ever league position. Their final match was against local rivals Henley RFC, a side that have featured in this blog in the past. Henley titled the game as the Battle of the Thames. No idea why as they were languishing down in ninth place in the league. A comprehensive 51-0 victory to the Rams followed, and frankly Henley were lucky to get 0. Rams scored two of the best tries I’ve witnessed in the 15 years or so of watching the 1^st XV, Conor and Scuba proving that we’re not just a lumpy forwards pack. This try was voted as National League Rugby try of the week  Try of the season!   

The Mighty Cents finished on a high with four wins out of their last four matches, the first time they’ve done that. Bernie and Rob will be missed next season, but as you’d expect with a club like Rams, their replacements are in place and raring to go. Max was welcomed into the Cents family two seasons ago, and has developed well as a player and young man under the team’s tutorage. Next season he’ll be off at Uni in Portsmouth, however I reckon he’ll be looking up the train timetables to see if he can get back for a few of the Cents matches if needed. 

The wonderful, mad, talented and un-shockable Sirens managed to complete their Half Marathon challenge on the final day of the season. Snow had forced the cancellation of the Reading Half Marathon when the ladies were going to be running to raise funds for the RFU Injured Player Foundation in support of their team mate Dani #DoingitforDani – They decided to run their own half marathon, leaving Old Bath Road at 11am, running the 21km distance, and finishing up back at OBR in time for the 1^st XV kick off. (Any rumours that they actually ran to the local pub, drank cocktails for two hours and then staggered back to the club are apparently false). (Any rumours that Amy Parsons broke her self inflicted booze ban after the run was finished and got wasted are apparently true) What they didn’t know was that Dani would be at OBR, STANDING to cheer them in as they finished. There was not a dry eye in the house, the following photo was taken with tears rolling down my cheeks whilst I tried to focus and hit the shutter release.

I was lucky enough to be asked to photograph the Rams Mini’s End of Season Presentations. The age groups were joined by England player, Natasha “Mo” Hunt who handed out the trophies to the Player of the Year and the Club Person of the Year. It’s always a great day to see all the smiling faces of the players and parents, and the smiling faces of the coaches and managers who know they’ve got a few months off before the mayhem starts again. Probably the biggest smiles are reserved for the wives and husbands of the managers and coaches who believe they may know get their partners back on a Sunday, and that perhaps that shelf may be put up……………. They’ll learn J 

Mark Pett-Ridge has done an amazing job running the Mini section at the club for the past few years, it was entirely fitting that his son Theo won the Hayden Jones Shield. I also think this was the first season that the girls rugby at Rams had been celebrated at the end of season bash, how appropriate that the players had someone they could really look up to presenting their trophies. 

Health wise things are still on an upward curve. I have bad days, but they’re outweighed by the good ones. The massages on my neck have helped immensely with the lumps, the downside is that the lumps were hiding the scars which are now more visible and far more tender. We’re working on that. The Physio has seen amazing results. In the four weeks since I’d last seen Sian I’d been working hard on the exercises she’d given me. Lateral movement increased from 80 degrees to 130 degrees. Frontal movement from 90 degrees to 130 degrees. There’s still a long way to go, but Sian is happy with my progress and a new set of exercises has been diagnosed for my pain and pleasure. The latest ones involve large rubber bands…….. what could possibly go wrong? I enjoy my meeting with Sian, it doesn’t feel like I’m seeing a health care professional, it’s more like having a chat with a friend. It takes me back to the original days when we were meeting CNS Jo on a weekly basis. We were discussing my voice at the last meeting and I commented that whilst I’m eternally grateful to still have a voice I’m very aware that I now sound like a cross between Daffy Duck and Darth Vader. I’d been on a call to a solicitor for my day job the morning I saw Sian and he kept commenting on how strange my voice sounded. It knocked my confidence quite badly for the rest of the week when I had to speak to people on a professional level, Sian understood entirely and instead of trying to placate me she stated the bleeding obvious, which was exactly what I needed. Would I rather have no voice at all?

Just over a week ago I had my valve changed again. It was only leaking slightly, but as it was 2mm bigger than the normal one it was spinning around like Linda Blair’s head when I was cleaning it. This also meant that I was producing more mucus than normal (sorry if you’re eating) and thus having to clean the valve more often, a vicious circle. The last thing I wanted whilst being abroad was to have to visit a hospital and try to explain what was going on. (Despite downloading an idiots guide to being a Lary translated into Spanish). It was quite an interesting session with the SALT Team. I’d been asked beforehand if I’d agree to having the process photographed for use in the training of A&E staff who very rarely see a Lary. Normally I hate being on the other side of the lens, but as this wouldn’t involve my face and was for a good cause I agreed, I even waived my usual modelling fee as a gesture of goodwill. The room the procedure was carried out in was quite crowded, as well as Caroline (SALT) there was a new SALT who’s name I didn’t catch and who’d never seen a valve change before. Then there was the medical photographer who looked quite shocked when I removed the base place and HME to reveal a raw hole in my neck. The procedure took quite a bit longer than normal due to me having to pose for various shots. Valve in, valve out, dilator in, new valve in, base plate on, base plate on with HME in. Now I know how those Vogue models feel after a shoot. I was due to attend the monthly Lary Club meeting after the valve change, but it was running late and I really needed to get home to do some work.

Whilst we’re away we’re leaving Neville in the capable hands of Max. It will be interesting to see who is the most pleased to see us return, my money is on Neville. As well as the usual #Stalker posts from our trip I’ll be posting updates from Mr Fox No.19 who’ll be joining us. It’s about time he was formally named so we thought that by taking him away for a week, without the distraction of Neville, we’d get a good chance to get to know him and come up with a suitable name. The shortlist at the moment consists of Jimi Hendricks, Gordon Moron, or Pinkman (I’ve been re-watching Breaking Bad), all three have a certain Gin connection and as I’d imagine #Stalker will be trying to drink her own body weight of the stuff before we land back at Gatwick, it might be an appropriate connection. 

Whilst I’m talking about body weight I think I’m going to have to think about looking closely at mine when we get back from holiday. I’m now tipping the scales at 87kg (13.7 stone in old money). This is probably the heaviest I’ve been since my original diagnosis in December 2015. After I’d got the “All clear” in May 2016 I bought a new suit, I had to travel up to London this week on business and putting the suit on this morning involved a bit of breathing in. I’m now up to 34” waist again, and back in my old Levi’s 501s, but perhaps breakfast of porridge, mid-morning snack, lunch of a pie, afternoon snack and then dinner may need to be curtailed unless I’m planning of hitting a 36” waist by July! The trip up to London that coincided with my realisation that I’m getting porkier went ok. I’ve found that in the morning my stoma is a bit on the “fluid” side, so a packed train and tube aren’t that much fun, especially for the poor folk sat next to me. But by mid-morning it’s usually settled down and I managed to go through a four hour meeting without having to clear out, or disappear to the loo for a blow. I was with two colleagues running through a new IT system at our Head Office in Triton Square, near Euston station. Meeting rooms are at a real premium, so we congregated around a table in an area known at The Street, not open to the public, but very busy with fellow employees walking around getting lunch or a coffee. I was doing the majority of the talking as it was my Laptop we were using for the testing. My two colleagues are used to my voice, or lack of it by now, but I was conscious of getting a few strange looks from people sat around us or walking past when I was ranting that the sodding thing was working as it should!! (The IT Test, not my valve for a change!). I was quite surprised that I didn’t get upset about being stared at, but I think that as I was in a professional situation, where I was confident, it didn’t bother me.

The train journey home was fairly painless for a change. Max met me at the station and Nev bounced around the house like a mini Tigger when I got home, apparently he’d been going into my office all day trying to work out where I was.

Neville’s getting on quite well with being a puppy, he’s learning every day and becoming much more of a personality. He’s even stopped chasing Penny the cat around, however she still wants to give him a smack on the nose every time he gets anywhere near her. His lead walking now is pretty good, not pulling too much. It’s just when he’s walking slightly behind me and stops without warning to sniff something. At that point my shoulder exercises are tested to the full. We’re slowly but surely increasing the lengths of his walks, and the variety of places he goes to. I suspect now that the rugby season is over that weekend walks could well be planned around a pub to stop at as a halfway house.

I’ll probably do some sort of blog update once we’re back from holiday, if nothing else there will be #Stalker pics to post. Then I think that the writing may go on the back burner for a while. I was checking out some facts on the blog a couple of days ago. To date it’s had somewhere just shy of 94,000 hits, been read in 32 different countries, and has just under 160,000 words. Not bad for something I thought might last four or five months at the most.

As always, thanks for reading.

To be continued……………?

#Shoulder2Shoulder

This is what I’m hoping to be doing for the next few mornings whilst Snorey McSnoreface has her beauty sleep

A Feast of Consequences

Weren't the old adds for cigarettes brilliantly incorrect, read on............. 

It’s been a fairly quiet time since the last real update, I’m not including the interlopers Neville and Penny, who by the way seem to think they should have a regular guest spot, or indeed their own blogs. Hmmm……. We’ll see.

I’ve been ably cared for by the lymphoedema team at the Duchess of Kent Hospice. I’m getting regular work outs with the physio on my shoulder, she’s really happy with the progress I’m making and was very complimentary of the work that Vicky had done on it back in August of last year. Slowly but surely the movement is getting better in the shoulder, but I’ve been advised it’ll be a long journey. Luckily most of the exercises I’ve been given I can do happily at my desk whilst working. The second specialist I’m seeing is for MLD Massage (Manual lymphatic drainage). I get to spend an hour lying down on a couch whilst the lumpy bits in my neck are expertly massaged to attempt to move the build-up of fluid so it can drain properly. Following the removal of around 35 lymph nodes under the knife last year I’ve had solid lumps below my chin, which aren’t painful, but over time they could cause problems. The scars are also being massaged as they are fairly sensitive. I’ve got to say that out of all the treatments I’ve had over the last couple of years, the MLD Massage is one of the best at producing immediate results. Over a fairly short period of time the difference has been amazing, the lumps are shifting, the scars are feeling better and I get to have an hour’s kip whilst it’s being done. The only procedure that I’ve dropped is reflexology. I was recommended to try it as my sleep pattern is still so poor. After three sessions I’d noticed no improvement, in fact I had once of the worst nights sleep in living memory immediately after one of the sessions. Whilst it was quite pleasant having my feet massaged for an hour I can’t really afford the time out for work along with the other treatments where I am seeing a benefit. I had a meeting this week with the person who’s been coordinating my treatments at the hospice, she’s happy that I’m responding positively and the treatments will continue when Carol and I get back from holiday in mid May. All of this is above and beyond the normal NHS treatment and is partly funded by the Sue Ryder charity.

I first came across the Sue Ryder charity when I was working for Lloyds Bank in Bracknell, many, many years ago. They are linked via marriage to the Leonard Cheshire homes. Now to digress for a few lines. Leonard Cheshire VC was a hero of mine. I’ve had a fascination with 617 Squadron since I was about 10 and first read the Paul Brickhill book “The Dambusters” which told the story of the RAF raid on the great Rhur damns during the World War II. That raid was led by Guy Gibson VC and it’s debatable as to the actual success of the raid when you also balance out the aircrew who were lost completing their mission. Gibson didn’t fly with 617 squadron again. Cheshire was instrumental in pioneering the “Master Bomber” role for the squadron when he flew a Mosquito at stupidly low heights to “Mark” the target, relying on the speed of the plane to out run the gunners. He was very much a thinking man and soon after the end of the war he set up the first of his hospices. He had no money, but he had a very strong faith. There’s a story that one day he had a deadline to pay a bill, with no funds in the bank, that morning a cheque arrived from an anonymous donor with enough money to cover the bill and a little bit to tide them over for a few more days. He and his second wife, Sue Ryder, went on to dedicate their lives to charitable work in the care of the terminally ill. He was a man who had his critics and wasn’t what you’d call conservative in his beliefs, but he worked for the betterment of others.

I briefly mentioned that Carol and I are off on holiday again soon. It’s been a whole 5 months since our last sunshine break so we’ve booked a 7 night stay at the Barcelo Hotel in Corralejo. We’ve stayed there a couple of times before and loved it. Our plan is to cycle out to the dunes in the morning, back for a late lunch then Carol can spend time in the hotel spa whilst I do a bit more cycling. As I’m now up to 87kg I reckon I’ll need to do some exercise to counter the meals and drinking my own body weight in gin on a daily basis.

And now for another step back in time……

Let’s look back at 30^th December 1978, I was 16. Some of the readers of this blog probably weren’t born, or even thought about. That night I was with my best mate, Rob Day, at a party in Wokingham. Dressed in my best Levi’s, cowboy boots and UFO T-Shirt, I was ready to party like it was 1999, albeit 21 years early. The party was held by Claire Porter who’d persuaded her parents that having a bunch of mates round between Christmas and New Year could only be a good idea. The evening was memorable for three reasons.

1/. As per usual I didn’t pull.

2/. Rob managed to back his mums Austin 1100 into a stationary gate post, giving it a large dent. (the car, not the gate post!).

3/. I smoked my first ever cigarette.

At this point in my life I was a bit of a “Jock”, not the Scottish type, more the sporty type (those at the back who are giggling please stop it, and that means you Parsons!) I played for all the teams at school, was still playing for Berkshire at badminton and considered myself to be a pretty fit young man.  (Parsons, this is your final warning!). Both of my parents had smoked for as long as I could remember, but I’d always said I’d never do it as I knew the nasty consequences of being a long term smoker. I vividly remember the disappointment on the face of the Head of PE at Forest School when he saw me smoking a fag at one of the school discos in the 6^th Form. He was a massive anti-smoking person who lectured us on a daily basis as to the long term effects of smoking the evil weed, but we knew better, we were invincible, we’d live forever.

Over the next 35 years I’d have numerous attempts at quitting. When Carol agreed to become the current Mrs C. I said I’d give up, I failed. When the current Mrs C. fell pregnant with Anna and then Max I said I’ve quit, I failed. God knows how much money went up in smoke over those years. I did eventually go to a “Quit Smoking” clinic which seemed to work for around 8 months until a fairly major event caused me to revert back to the drug. The next five years or so were spent saying “Next week I’ll quit”, but “Next week” never seemed to arrive, until that fateful day in December 2015 when the doctor gave me the news that I’d probably be expecting for a number of years.

Since that Thursday afternoon in the ENT Dept. at the Royal Berkshire Hospital I’ve seen consultants, surgeons, CNS specialists, SALT team, radiographers, chemotherapist nurses, anaesthetists, head and neck specialists, nurses who earn sod all but give everything, specialist treatment nurses, GP’s, practise nurses. Not one of them have said, and they could have done, “Mr Clark, you’ve brought this on yourself by being a smoker”, they’ve treated me with the upmost respect and dignity, they haven’t judged me, they haven’t lectured me, they’ve kept me alive.

When I took that first puff of a Silk Cut I wasn’t thinking that 40 years down the line I’d have my voice box cut out because I was being a prat, I knew it wasn’t going to do me any good, but I still had a suck. There is no one else to blame for me getting cancer, I’m the first in my family to be hit be the bastard, so it isn’t hereditary, it isn’t in my genes. I got cancer because I was a smoker, I’m facing the consequences of my actions without blaming others. I’m thankful that the people keeping me alive aren’t judging me, they’re treating me. I’m thankful that we’ve got a “Free at the point of treatment NHS” regardless of its short falls.

In other news, the rugby season is coming to a close in the next few weeks. Rams will finish either 3^rd or 4^th in their league, their highest ever position. The Mighty Cents, the team that Max is playing for, will also probably finish in 4^th place to match this league position of last season. One of the highlights of the season took place last weekend with the Rams Mini Festival. Last year it was played in temperatures in the high 20’s, this year it was a mud bath, but as always there were happy and smiling faces at the end.

Neville is still being a puppy, even though he’s now a couple of nuts short of a Waldorf. He’s signed up for another set of lessons with Tails of Tilehurst to improve on his recall. He’s pretty good now at loose lead walking and is learning to sit and wait pretty well at the curb, but he can be a real pain when it comes to being recalled in the park. He never strays far away, but likes to come back in his own good time when he’s finished sniffing whatever it is that he likes to sniff. I’ve heard it said by various people that “Dogs know things.” Neville seems to sense if I’m not feeling great and will often come and sit next to me quietly for a while, it’s his therapy dog trick. Ok, 20 minutes later he’ll be barking at the cat flap for no apparent reason, but he’s still a puppy and that’s what I need to remember. 

 

Max is going to look after Neville whilst we’re away, what could possibly go wrong? J

That’s about it for this post, I’m not sure when the next blog will be, probably just before I take the #Stalker away to the sunshine.

As always, thanks for reading.

To be continued………………

#Shoulder2Shoulder