Friday, 16 February 2018


Money


Just when you thought I’d left you alone on your Friday evenings…………………. Sorry folks, I’m back, but don’t despair, this isn’t a long post. I thought long and hard about whether to post this update or not, it probably won’t be to everyone’s taste or agreement, but hey ho.

Some time ago it was mentioned that I used a fair amount of acronyms or technical terms when I’m writing my blogs, so to start with here’s a key for what is likely to come up this week.

·         HME – Heat and Moisture Exchange – this is the filter I use to regulate the air into my lungs.
·         Stoma – The hole cut into my throat to allow me to breath.
·         SALT – Speech and Language Therapists.
·         CNS Nurse – Clinical Nurse Specialist.
·         OBR – Old Bath Road.
·         RTFM – Read the F**king Manual.
·         LUNA – A specific base plate designed for use at night.
·         LARY Club – the few poor souls who’ve undertaken a laryngectomy and who meet up to chew the cud.

In the couple of weeks since my last update I’ve been feeling pretty good as far as my health is concerned. I had my monthly consultants meeting at the hospital, which went well, albeit with a Dr. I’d never met before and who hadn’t actually got my notes to hand. I then saw Susan in the SALT team to discuss my stoma feeling a bit sore and the bone around the area feeling a bit bruised. We discussed the types of base plates I wear and how long I’m wearing then for with the HME’s. Susan’s advice was that really I should be giving my skin a rest at least twice a week and just wear a protective flap over the stoma when I sleep. Now read on and bear in mind the italicised text was written when I was feeling a bit pissed off with the way I felt I was being treated by a key supplier………….

On Thursday I was invited by the company who make the vast majority of the kit I use on a daily basis, to allow me to breath, to attend a presentation at Reading Town Hall to discuss ways of making sure your Stoma and HME are working as well as possibly during the winter. I did think that the middle of February was perhaps a bit late for the subject, but decided to attend as I’d missed their last presentation. I turned up with no real expectations, other than perhaps I’d learn some tricks of the trade to perhaps help me next winter. I’ve suffered quite badly since November, the cold air really plays havoc with my lungs, and being outdoors for any length of time in the cold weather is really to be avoided. Scarfs don’t work as when the HME is covered I really struggle to get air in properly. On entering the room in the town hall I was greeted by two other Lary users, one whom I’d met in my Lary Club meeting last September, the other I didn’t know. The only other person in the room was the Rep. from the manufacturers who looked relieved to see another willing victim of her presentation.
I’d hoped that the session would be a “Meet and Greet” type affair, a cup of coffee, chat around the water cooler and then make excuses after 30 minutes or so. I was to be disappointed. The Rep. explained that she’d be making a two hour PowerPoint presentation on the benefits of wearing some form of HME 24 hours a day, my heart sank.

The HME is a nifty bit of kit. I’ve got three different types I use. The FreeHands, which as the name suggests means I can speak without covering the filter. A normal “Push Filter” system and finally the “Luna” night filter. They all work in roughly the same manner. The filter will have salt covered foam behind it, this works in two ways. When I breath out, the filter catches heat and moisture, when I breath in the cold air is caught by the expended heat and moisture and warmed up before hitting the lungs, stop me if I’m being too technical. Basically air needs to be at around 37 degrees and 100% moisture before it hits the lungs to allow them to function properly, too cold or not enough moisture will result in a chest infection at best.

Of the three Lary users at the meeting, one was a 20 year veteran, the other over 10 years, and me at 8 months, but an educated 8 months. The first 20 minutes of the PowerPoint really was teaching your Granny to suck an egg. It was around this point that the lightbulb clicked on in my brain. The Rep. kept mentioning about how her Company spent so much on research and development and that their competitors were cash strapped so couldn’t do the same. At this point she introduced the Luna system into the conversation, almost seamlessly. If we’re wearing an HME filter then we also need to use a base plate to keep in in place, don’t worry, there will be photo’s at the end. Wearing a base plate over the Stoma all day, every day, can be a bit tiresome as it will probably irritate the skin and can cause painful sores. The Luna system is designed to keep any irritation down to a minimum by having a sort of soothing effect on the skin, it’s probably witchcraft for all I know. 

I’ve been using the Luna system since the end of October, not every night, but probably four out of seven nights. The other three nights will either be flapping free or a slightly softer base plate then the one I use daily. The Rep. was adamant that research, undertaken by her company, who supply the kit, had proven that HME’s MUST BE WORN 24 HOURS A DAY.

My Consultant, who I trusted with my life, and my CNS Nurses who’ve seen me smile, cry and all emotions in between, have both said that giving the neck and Stoma a rest from a base plate is a good thing and will cause no problems whatsoever. And as previously mentioned, my SALTs had also said the same thing the previous week. Now, who am I going to trust on this one? Someone who’s paid by a company to sell their products, or three (+) Healthcare professionals who have no financial investment in the product? I’m a cynical old Hector at times.

The Luna system is ok, but in my mind it has its flaws. The HME’s are a slightly smaller size than all others, despite the four different manufacturers agreeing to make them all a standard size. When I questioned the Rep. about this she claimed it was so that the users didn’t use them in the day time, well that’s just bollox as you can hardly speak using them so they’d be pointless, maybe they’ve been designed to be smaller so that the Lary user has no choice and has to use the bespoke HME? It’s also a pain in the backside to put on. I mentioned this to the Rep. and her initial reaction was that I must be doing it wrong, well thanks a bunch, I’ve been following your employers instructions. She gave me an example to show how I was using it, and conceded that my way of application was exactly how it should be done. She couldn’t explain why to apply this base plate you need to complete three actions, when on the other base plates you only need to do one. That cynical old Hector in me just kept coming up with the same answer “Price”.

Throughout the whole meeting she kept reiterating that the NHS / GP can’t deny us any of the kit that her company supply, we can DEMAND that it’s given to us. After about the forth or fifth time she said this my hackles started to rise. Her pitch smacked of raising as much profit for her employers as possible and sod the actual needs of the patients.

I’m on my sixth different type of valve thanks to the dedication of the SALT team who look after me, they’re not thinking of the cost / profit margin. No one is questioning the kit I have to order each month. I’m costing the NHS a bloody fortune each month, but I’m not a patsy, I’ve got a brain and I can easily see when someone is trying to play the three card trick on me.

Two of us left what was supposed to be an informative presentation, but what turned out to be a “Timeshare” sales pitch early, I suspect that neither of us will bother return for next month’s sales pitch. Throughout the 90 minutes of so I was there, the only mention of protecting the stoma from winter weather was to wear a scarf, which is pretty difficult to do when you breath through your neck.
Now this update may just appear to be me sounding off, after all I do use the companies supplies and apart from the God awful delivery problems (yes, the suppliers are owned by the manufacturers!) I’ve generally been happy with the products. What’ got my goat is the blatant way the meeting was just an excuse for a sales pitch for a new piece of kit which would have a far higher profit margin than most people’s current choice and held no relevance to the proposed subject of the meeting.


 LUNA Base Plate


Xtra Strong Base Plate


Standard Base Plate


Protective Foam Flap (To cover the stoma at night)

As I said at the beginning of this update, I’m feeling quite chipper. My weight is on the up, I’m over 83kg for the first time in over two years. My appetite is probably at an all-time high. Porridge for breakfast, cooked lunch and full dinner supplemented by snacks seems to be doing the trick. Carol and I went to Nino’s in Pangbourne earlier this week and I managed to clean the plate and have room for a pudding too, I’ll have to buy 34” jeans soon if I’m not careful. I don’t want to tempt fate, but my valve is now going into its sixth week, a record for me, with no sign of leaking. Maybe the time and effort the SALT team have put in is beginning to pay off.
In other news, Neville is getting to be a slightly calmer dog and is certainly benefitting from the puppy classes he’s been attending for the past four weeks. He’s also got an appointment at the “Doggy Dentist” for the end of next month when he’ll be losing a couple of bits and pieces, not from his mouth though.



Finally, the rugby season is beginning to come towards its conclusion. It looks like Rams will finish either third of forth in National 2 South, a superb performance for this young side and a great result for Seb Reynolds in his first season as Head Coach. Tomorrow I’m off for the long trip down to Barnstaple to watch the boys play and no doubt be on the end of another rib breaking hug from Verity.

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder

Friday, 2 February 2018

Flash Bang Wallop, What a Picture.



I mentioned in a previous post that I was asked just before Christmas to take photos of some the Rams Sirens Ladies side “Baring All” to raise funds to help their injured colleague Dani Watts. Well, better late than never, the calendar is now available to buy online from the Redingensians Rams website - Rams Sirens Calendar you do have to join the website, but that only takes a couple of minutes and is entirely painless. All profits from the calendar will helping Dani in her long road to recovery. 



I was very pleased with the final results of the calendar shot, it was the first time I’d done anything like that, but the edited shots turned out to be pretty darn good, even if I say so myself.

Anyone who has read this blog for a while will know that photography plays a large part in my life. I promised myself that when the big C came to play that I’d still take photos. I managed it more or less most of the way through my first treatment, with one spectacular failure at Old Bath Road when I left in an ambulance before the game even kicked off. The second treatment was obviously a bit more of a challenge as lying in bed in the Churchill for two weeks limited my chances with my camera, other than the iPhone which is fine for snaps or Instagram, but pants for decent photos in my opinion.  
One of the wise old owls of the Ramily reckons he can always tell when I’m feeling ok as my photo’s from the Rams matches are on point. If I’m feeling rough they’ll be ok, but nothing special. I know exactly what he means. Sometimes it’s easy to just go through the motions on a shoot and take pictures without putting too much thought into it, especially if I’m not 100%. I’ll give you an example. Last weekend Rams took on Tunbridge Judians at Old Bath Road. The weather was awful, drizzle, lowlight and cold, just the opposite you’d want for good photos. But, I was feeling good. I sussed out straight away that long lens shots weren’t going to be great as I’d pushed ISO up to a fairly high number to compensate for the light. Walking around the pitch and almost following the action produced some cracking shots. They took a bit of editing via Lightroom, and it probably took me an hour or so longer to get the results published, but I like to think the time and effort was worth it. 



I bought my first SLR camera when I was 17, it was a Russian built Zenith II with a 50mm f1.8 screw fit lens. It weighed roughly the same as a baby elephant, which had the advantage of making camera shake non existent. It was an entirely manual camera which meant I had to use the light meter, judgement and a fair deal of luck to get the correct shutter speed and aperture settings. I loved that camera, in fact, I think it’s still up in the loft somewhere. That rock solid beast of a camera saw me through to meeting and marrying Carol. One year, for Christmas, I was convinced she’d bought me a budgie and wrapped it up in a nice little box. In fact it was a 125mm lens for my Zenith, nice bit of glass, but not a budgie.

I eventually decided I needed a bit of a better camera as I was starting to get more and more keen on the hobby. So my next purchase was a Praktica BX20 twin lens outfit purchased from Station Camera’s (Long since gone) in Reading. It was quite a nice bit of kit, but prone to jamming on the manual film wind. It was also about this time that autofocus cameras really came into play. So, after a couple of years of the BX20 I upgraded to a new Canon EOS100. Still a film camera, but with autofocus, auto wind and all signing bit’s ‘n bobs. This started my journey with Canon equipment. Next followed a film EOS5, then my final film camera, an EOS3 which was a truly wonderful bit of equipment and my first foray into what would be classed as Pro Spec Kit. However, film was losing the battle against digital, so with a degree of reluctance it was bye bye to the EOS3 and hello to a Canon EOS20d. I’ve still got 5 rolls of film in the fridge in the garage, over 10 years old now and way out of date. I’d love to run one through the old Zenith and see what the results would be. The next thing to concentrate on really were the lens’, very early on I was told that the glass is just as important as the camera body, so as soon as I could afford it I went for a 70-200 f2.8 and a 17-55 f2.8, to this day they are still the lens’ I use. The 70-200 is ideal for sports photography


 and the shorter lens is perfect for portraits, landscapes, or of course Neville.



Three years ago I upgraded from the EOS20d to an EOS7d which is still the body I use to this day. One day, when the 6 numbers come up I’ll buy that EOS1ds………

Once people find out that you take your photography fairly seriously you’re bound to get the “Could you do my wedding?” questions. Stupidly, four times I’ve responded positively to that question. Three were done for gratis for friends or family, one was a paid job for a friend of a friend. The free shoots were ok, but still stressful. Asking if Auntie Joyce could possibly put down her dry sherry and join in the “Family Shot” isn’t so daunting when you know that Auntie Joyce is a game old bird. Doing the same when you don’t know who the relatives are and don’t know if they have a sense of humour is more of a challenge. The one “Paid” assignment I took on was down in Sussex, I think I left home at 7am and got back again at gone 10pm, I didn’t charge enough for my time, especially as I had to use my day job professional skills to actually get paid for the job. The highlight of the day for me was probably when I was taking a group shot fairly close up with a wide angle when some wag from the shot commented that “You’re too close, you won’t get us all in”. My response of “I don’t tell you how to clean the toilets, don’t tell me how to do my job.” Didn’t actually go down as well as I’d hoped, matey boy seemed to take objection to be called out for being an idiot J

Nowadays my photography is limited to pleasure only, rugby, Neville, and anything else that takes my fancy. I’ve done the odd shoot for friends in specific subjects but not for cash, there’s too much pressure to produce results that justify the fee, that’s not me.

I was lucky enough to get great photography advice from a Pro Photographer who had strong links to Redingensians RFC. I did a couple of days work for Gareth when in all honesty I was probably still too inexperienced to know what was expected. The 7 a side Football festival was a real eye opener, not only in the way that no one seemed to respect the players or refs, but in the way the ball pinged about all over the place. At least with rugby you’ve got a fairly good idea how the play will work out, unless of course Max is on the ball, then it’s anyone’s guess!

My advice to any budding photographer out there would be to shoot as many shots as you can, use as many different modes as possible so you can get any idea of the differences between Sutter Priority, Aperture Priority, Manual. Take the camera off Auto and play about with the settings, be brave! Finally, spend as much time as you can with whatever editing tool you use, don’t fall into the trap of publishing quickly to satisfy the demands of others, they’re your shots, show them some love before showing them to Joe Public.

This was another “Not really about Cancer” post, I’m enjoying this sort of writing. My current valve has lasted over three weeks, which is a record, I’m enjoying this sort of health. Sunday 4th February is World Cancer Day, I’m enjoying this sort of still being here to contribute. The Six Nations are about to start, I’m enjoying the annual banter.

And to close off this post about the wonderful ability to simply capture a moment in time, indulge me, here are some of my favourite photos I’ve taken in the digital age.

#1 - Steep Hill in Lincoln, aptly named - 



#2 - Max at Porthcothan Bay, learning how to use a camera - 



#3 - Red Kite flying low over the house - 



#4 - Rams winning the Championship - 



#5 - RAF Tornado at Fairford Airshow - 



As always, thanks for reading. 

To be continued……………..


#Shoulder2Shoulder

Friday, 26 January 2018

Working Nine to Five, what a way to make a living…..



I started writing this update on Thursday evening, I’d just eaten a large bowl of chilli and will probably be eating the remainder for the rest of the week as I’d forgotten that Max was off to Paris until Tuesday, but it was a rather good chilli. As am aside, Max travelled all the way down to Exeter to catch the coach to Paris with Laura. I received a text from him at about 11.30 at night to say they’d just pulled into Reading Services on the M4 J  I was knackered, but happy knackered if that makes sense? This week has been the most “Full on” week as far as work goes for probably 12 months, but I’ve survived, ok it was only Thursday, we can call bullshit our way through a Friday at work, I’ve been doing it for years. Neville was sitting on the sofa next to me, every so often looking at the screen to make sure I’d mentioned him in a good light.



As well as checking up on my writing Neville has also decided he want's to critique my glass of wine each night, he's more of a Merlot mutt than a Pinot pouch. 



I’ve decided that instead of writing my day to day activities, which let’s face it, can be quite boring, I’d write about a specific subject and publish when I’m ready. This week’s musings are about work, with a bit of Neville thrown in for light relief.

I’ve written before about what I do for a living. I’ve been in banking in one way, shape or another since I left school. At age 21 I joined an American bank in the Collections Dept. and that’s roughly where I’ve stayed for the last 34 years. When Anna was about 7 or 8 she was asked by a teacher at school what her parents did. “Mums a Nurse and Dad gets people to pay him money” was her answer……. Well I suppose that’s true in the widest sense. The way I look at it is the bank have leant you £1.00, my job is to get you to pay back £1.20.

I’ve been working for my current (& probably final) employer for the past 14 years, since I designed a Collections system for the Dutch bank I worked for which ended up with me being made redundant. I’ve also written about how supportive my employers have been to me whilst I’ve been ill. At no time have I been under pressure to return to work, or to do more than I’m feeling well enough to do. That support continues to this day.

On Monday I went to my first external customer meeting since Lary was cut into my throat. I was nervous, I was scared. The meeting was at a Care Home in Worthing, at 10am. Now Worthing is a pretty shit place to get to at the best of times, but in the rush hour on a Monday, just multiply the shit by a factor of 10. I arrived on time and was greeted by the customer as if nothing was strange about the way I looked or spoke. We were supposed to be meeting a third party who eventually arrived over an hour late, with little explanation, his first comment was “Oh, what’s that?” pointing at my stoma. His delayed arrival meant that I got to have a good look around the home. Prior to Lary I used to use the “Sniff” test when I was at a care home. Does it smell of stale cabbage? Do the carpets smell of wee? Obviously that type of test has had to go out of the window as far as I’m concerned.

I hate people who are late for meetings with no good excuse…….. 

I eventually got home after spending around five hours in the car, I was knackered, I was slightly peeved, but I’d done it. I’d done my job and hadn’t had to clear out my stoma during the meeting. My voice had behaved itself. I’d made the right decisions as far as the customer was concerned. To paraphrase Arnie “I was back”.

The rest of the week was positive, a couple more cases transferred to my portfolio, one looks like it’ll be a real humdinger to challenge my diplomacy. A challenge I’m looking forward to.

Our Head Office is based up in London, not far from Euston Station. My Laptop had been opening with the Blue Screen of Death for the past week, so on Thursday I took the train up to town to see our IT Dept. This was the first time I’d been into HQ for over a year and I wasn’t sure if my staff pass would still work. By the time I arrived my throat was playing up and my voice was rather squeaky. First challenge was overcome when my security pass got me through the barriers. Second challenge was finding the chap in IT who was going to look at my Laptop. Luckily his directions were spot on and after a quick double take when I first spoke (I’m getting used to that) he proved to be really professional and diagnosed a shagged out Laptop, promised a rebuild by Monday and provided me with a loan machine. I was in and out with 40 minutes and on my way home with no mishaps.

My work diary is begging to fill up with customer meetings, internal meetings, supplier meetings and even the odd “Corporate Entertainment” meeting, it’s been a while. This means that instead of sitting at my desk and trying to work out how to fill my day I’m now having to work out how I’m going to fit in my daily walk and play with Neville. He’ll always get the attention he needs, be it from Max or I during the day. He’s still teething quite badly and has probably an hour a day when he’s a little shit who just wants to bark, bite and run around manically, but he’s getting much better. A Kong stuffed with cream cheese, a piece of frozen carrot or a lamb bone will usually calm him down. He had his first puppy class last Wednesday. Three other pups were there and it turned out that one of them had an assistant who’s a coach of the U6s at Redingensians, what a small world. Nev was a bit overwhelmed for much of the session and just wanted to play with the other puppies, but he behaved himself and when we got home he was fine with the training drills we’d worked on, he was also totally knackered and didn’t wake up until 7.30am the next morning, bliss…….. I feel like I’m a proper dog owner now as Nev has drawn blood on my hand. It wasn’t really his fault though. We were taking our morning walk to the park when as the entrance we met 6 or 7 other dogs being walked by a couple of people. The other dogs were fine and just wanted to say hello to Nev, but he’s still very timid around other dogs and tends to hide behind my legs. I failed to notice that he’s slipped out of his harness and was no longer on his lead. So when I went to put his lead on his collar he went into a bit of a panic as the other dogs had surrounded him, he barked manically and bit quite hard into my left hand as I went to pick him up. Being still a puppy means his teeth are like little needles. Blood everywhere, very painful hand, but dog calmed down and the walk continued in a happy manner until I realised the bleeding wasn’t going to stop and we returned to home for repairs. 




Tonight will be a quiet one, yeah right! Carol and I are off to the rugby club for a Burns Night Supper, of course I won’t be able to wear my Clark tartan tie this year. I did look at buying a Clark tartan waistcoat but bulked at the £250 price tag! Last year started off as quite a tame affair, but apparently I went from being pretty well sober to totally sparko in the space of about 20 minutes, or put it another way, in the space of about ¼ bottle of decent Malt! This year I’ll behave………

As always, thanks for reading.

To be continued………….

#Shoulder2Shoulder

Friday, 19 January 2018

My Family…… and other animals.



Another week when I hadn’t planned to publish an update, but for happy and proud reasons, I found a good reason to write again this week.

Back in December 2015 when the original diagnosis of Throat Cancer arrived Carol and I were really worried about how we were going to tell the kids, what their reaction would be and how they would cope. At the time Anna was in her second year at Lincoln Uni and Max was starting his A Levels. Having a dad facing treatment for cancer, albeit with a good prognosis, wasn’t the ideal way to be preparing for exams. In their own ways Anna and Max coped, got their heads down and worked hard. Then came May 2016 when I got the news that “It” was back and I’d need surgery. This wonderful news coincided with Anna’s final exams and Max sitting his A level exams, great timing again Mr Cancer, cheers mate.

Anna and Max are very similar in some ways. They’re both kind, courteous, polite and hard working. Anna, like a lot of girls, worked very hard through school, did well in her GCSE’s and A Levels and ended up with a great degree and a job she enjoys up in Leeds.

 
Max had to work much harder. Like a lot of boy’s he found exams a bit of a struggle and had to have two attempts at his A Levels, but got the grades he wanted in the end. Both of the kids have worked at the rugby club at different times, Anna in the kitchens and Max as the cameraman for the 1st XV for a couple of seasons.  Both have worked at Explore Learning as tutors, in fact Anna is now a Manager of an Explore Centre up in Leeds. But Max has outdone his big sister. She was never named Tutor of the Year, which is an award Max received this week. A decent pay rise and a posh dinner are his rewards, as well as looking pretty damn good on his CV for future job applications.

Max has had the nickname Muppet Max for a number of years, and I’m sorry to say it was probably me who first started using the name some years ago. He was known for doing pretty daft things, usually on the rugby pitch, much to the dismay of his team mates and coaches. When he first started playing, aged 5, he very rarely made the 1st team, by the time he was in the Colts he was normally in the starting XV. Rugby, like life, is a slow burner as Graeme Cook would say.



The vast majority of the really promising players at Under 10 or Under 11 are no longer playing, but Max has shown what hard work and not giving up can do for you, in rugby and in life.

This week has, by and large, been pretty positive. My voice has been quite strong most of the time, work has been going ok and Neville has by and large been behaving himself when you consider he’s still very much a puppy. That's if we discount Wednesday night when he became petrified by the heavy wind rattling the cat flap in my office. Carol took one for the team and slept on the sofa with him from about 3am. So Thursday morning was quite a subdued affair in Clark Acres, the dog was still slightly spooked, Carol was limping (having fallen down the stairs last night) and I was pretty knackered too having slept quite badly once Carol wasn’t in bed for me to warm my feet on.  Things took a bit of an upturn around 11am when Max, who’d been up since 8.30am (????) got a text message from Portsmouth University, he’s been accepted onto his course for later this year! This is brilliant news as he’s worked so hard in the last couple of years to achieve this goal under such trying circumstances. He can fly off to Paris next weekend with Laura and enjoy himself without having to worry. Max, if you’re reading this, it’s not compulsory to propose at the top of the Eiffel Tower, as much as we love Laura………….  J It also transpires that Explore are opening a centre in Pompy later this year, so his student debt can be subsidised.

Carol and I have already discussed putting the house on the market, selling up and disappearing to the sun with Neville come September, we may even leave a forwarding address for the kids, if they’re lucky. It does feel like a case of “Job Done” and we’re both so incredibly proud of what our children have achieved to date. Somewhere along the line we must have done something right or we were lucky. I’m pretty crap at saying things out loud, but I’m not too bad at the written word. Just before I went into hospital in June it was Fathers Day, Max made me cry when he proved he’d followed in my tradition of being pretty damn good with the written word.

Finally, for this brief update I thought I’d point you in the direction of someone well worth following on Twitter if you use it. Lobke Marsden @lobke_marsden  works in Leeds on the children’s cancer ward as a Radiotherapy Play Specialist, she makes it fun for kids to be zapped. When I’d finished my RT and was given my mask I decided to decorate it in Rams colours,

 
Lobke goes way beyond that and makes the kids RT masks into works of art RT is a pretty shitty thing to go through as an adult, as a kid it must be even more awful, but, and it’s a very small but, to do it in a Batman / Superman / Spiderman mask must make you feel invincible. Wish I’d had one when I went through it. …….. #NHSCrisis?

As always, thanks for reading.

To be continued………………


#Shoulder2Shoulder. 

Friday, 12 January 2018

#NHSCrisis


Two years ago this coming week I started my first course of Chemo and RT, the above photo was when I was still innocent about all that was ahead. 

I wasn’t originally going to post an update this week, but the events on the news channels and my experiences of the brilliant service I received from the NHS changed my mind. I will warn you though, these views are my own, and will probably not meet with the approval of everyone, they’re just based on my dealings over my life to date with the NHS.

Let’s go back a few years, actually quite a few years, ok 44 years. I fell down the stairs at school, I’m still convinced that Nigel Nelmes pushed me but I can’t prove it. My ankle hurt like buggery and swelled up to about three times its normal size. When I’d eventually cycled home my dad took me to see out local GP. I can’t recall his name, but I think he was relative of Genghis Khan and had roughly the same bedside manner. I was told in no uncertain terms that it was just a sprain and to stop moaning about it. Two days later I eventually went to the A&E Dept. at Royal Berkshire Hospital for an X-Ray which showed I had broken my ankle in three places and was in plaster for the next six weeks. This was my first real interaction with the NHS, a crap bit and a good bit. The following 40 years or so were fairly quiet, I’d go to the Dr’s with the odd complaint (& I am quite odd), I’d get a prescription for drugs, I’d ignore the instructions on the prescription and life would continue in it merry little way. My main interactions with the NHS were via the dentist. I’ve chronicled before my abject fear of the dentist since reading The Marathon Man, aged about 19, so I won’t go into that again, suffice it to say, I’m still petrified of that reclining chair.

When I was in my late 40’s I was viciously attacked whilst coaching U13s rugby by a fellow coach! Giles Perry decided that whilst we were demonstrating a specific drill to the kids that he’d break a few bones in my hand, always thought he was a bully. The club physio’s thought it was nothing more than a strain, the Dr I saw at the hospital the next day confirmed it was a break of two bones in the hand and six weeks encasement in plaster of Paris was in order. The Dr. said, and I quote “Mr Clark, at your age bones take longer to heal!”

So, for the first 40+ years of my life the NHS, once you got past cocking GP’s, had treated me really well, albeit for minor bumps and bruises.

Then came the Christmas of 2014. I’d been suffering from an abyss on my groin for a few days in the run up to Christmas, but had stoically continued with the celebrations by drinking my own body weight in booze etc……. come Christmas Day I was in agony, but somehow managed to get through the opening of presents, lunch and Dr. Who before conceding defeat and asking Carol to drive me to the hospital at around 10pm. Now bear in mind, this was Christmas night, the place was heaving and I wasn’t ill as such, just in quite a bit of pain. I lay on a gurney in the A&E Dept for probably six hours before I was treated, but in that time I was seen by a member of staff once every 30 minutes or so to make sure I was ok, I was given pain killers, I was treated with respect. In the waiting area there were people of varying degrees of illness. There was one guy though who was a total and utter pain in the backside, he complained about having to wait at the top of his voice at every opportunity. He was extremely abusive to the staff, who lets not forget were working on Christmas night, he was a complete cockwomble! I was eventually moved to a ward in the very wee small hours of Boxing Day and operated on that morning. Again, the treatment, and dignity I received from all the staff I met in my 48 hours stay was exemplary.

Fast forward 12 months to December 2015, within two weeks of seeing my GP I’d been told I’d got cancer and would be joining the conveyor belt that meant the treatment I’d get would be second to none in the world and it would cost me not one iota. Again, I’m not going to go over the last 24 months, there’s been a couple of dodgy points in treatment, but 99% of it has been brilliant. Take this week as an example.  needed to make an appointment with my NHS Dentist for a check up, and bear in mind my fear of the drill wielding maniacs! Rather than phoning as my voice was pretty shagged I drove up to my local practise, and made an appointment for the next day at 8.15am, how’s that for service? ......... #NHSCrisis? 

When I showed up my dentist was her usual self, very quiet, but very concerned. I’d last seen her the week before surgery when she wished me the best for what I was about to undergo. This time it was a case of a quick scrape round, an X-Ray and a bit of cleaning. See you in six months for more of the same.

My current voice valve had been in for just under three weeks and was now leaking quite badly. I’d first noticed it leaking last week at my father’s funeral in deepest, darkest Wales. We were supposed to be having the wake in a local Tea Room in Lampeter (my sister is doing Dry January, guess that’s why we were booked into a Tea Room rather than a pub), luckily we were early so 8 of us made an excuse and nipped into the nearest pub for a quick snifter. It was whilst drinking a glass of the finest Pinot on offer in Lampeter that I started to choke as it leaked straight down into my lungs. Over the next few days the leak continued and hit a real peak on Wednesday when I was taking a glug of water which avoided my throat, went straight past “Go” didn’t collect £200 and made a bee line for my lungs again. This was probably the worst incidence of leaking I’ve had and prompted me to get hold of Carol at work and ask her to come home as I was feeling so ill. That night Penny decided she’d play some games with Neville……

……… each night we put Neville into his crate for the night and lock the door. His crate is in my office at the back of the house, it’s also got the door to the garden which has the cat flap in it. At about 4.45am on Thursday Penny decided she’d go outside for a while, I think as she was walking past Neville’s cage she probably ran her paw along the bars just to wind him up, it worked, all hell broke loose with barking and howling, leaving me with little option but to get up. A quick run around the garden for a pee and a poo (Neville, not me) seemed to settle him down and by 6am he was sitting by my feet fast asleep and snoring. Meanwhile the cat had come back in and was also having a nap on our bed, joining a fast asleep Snory McSnore Face, AKA Carol. As I’d been feeling pretty rough when I went to bed on Wednesday night I didn’t bother putting a base plate and filter on my stoma, instead I just used a medical flap to keep mice and other such nasties out of the hole. It was whilst trying to have my first coffee of the morning that I noticed my chest as damp. The coffee, instead of making its way into my stomach was leaking straight out of the stoma hole and down my chest! I may just as well have poured it straight down the toilet and cut out the middle man. So at 7am on a cold, damp and dark Thursday I emailed the Speech and Language Team, wishing them a Happy New Year and asking for yet another valve change. I’d resigned myself to a weekend of managing carefully what I drank and probably trying to manage a nasty chest infection too. Oh well, time to start the working day. At 8am my phone went “Ping” and there was an email from Caroline my Speech and Language Therapist, an appointment for 3pm the same day was made and suddenly my mood lifted. I even gave Neville a quick stroke! ……………… #NHSCrisis?

Turning up at the ENT Dept. at the hospital on Thursday afternoon was like going back in time. More Scary than Scary said hello. I bumped into a chap I’ve been chatting to online for a while as he was leaving his appointment, good to put a face to a name. I also had a brief chat with the original Scary who was interested in how I was getting on. I got to see Caroline and Susan for the valve replacement, they are a great double act, a sort of younger and slimmer version of French and Saunders. They have a great ability of putting me at my ease whilst they’re poking around my stoma with a pair of pliers trying to pull the old valve out. This time we’ve gone for a dual valve system (no idea what it is) which will hopefully last longer than three weeks. I always feel comfortable talking to Caroline and Susan so I explained that the constant leaking was making me feel quite depressed and was having an adverse effect on life in general. I’m reluctant to make plans from around 18 days into the new valve as I feel it’ll start to leak, I’ve even cancelled or rearranged both work and social commitment as I’m not confident of being watertight that day. They understood perfectly my concerns and came up with a plan of action. I’ll be getting an X-Ray done of my swallow, similar to when I was in Churchill, this will show how my throat reacts to the swallow and how it handles food and liquid. It will give the consultants a much better insight into how the valve is fitting and any underlying problems that may be causing them to fail so quickly. Susan apologised that I’d have to probably wait two weeks for the X-Ray to take place…………… #NHSCrisis?

As an extra cherry on the cake Susan also told me she’d be referring me to the team who deal with scar tissue to show me the best way to manage it and to try and get feeling back into the right side of my neck……….. #NHSCrisis?

These have been my dealings with the NHS, with an odd couple of exceptions I’ve been treated with care, dignity and speed. Over the past two years I’ve got to speak to a number of people around the world who have also been going through various different treatments for cancer, almost to a person they’ve been envious of the treatment I’ve received, especially when they realise it is free at the point of care. It was pointed out to me last night that if I was in the USA with no insurance then it’s likely I would lose my house and be made bankrupt to pay for far inferior treatment. I of course know of some cancer patients in the UK who’ve had different experiences to mine, they have felt let down, alone and worried, but I can only pass on my own thoughts.

Now the other side of the coin that I see on a day to day basis. I see Carol leaving home at 7.15am to be in work by 8am. She’s very rarely home before 7pm, usually staying on to complete (unpaid) work or to look after patients who are still waiting for transport home…………….. #NHSCrisis!

If I’m ill (not cancer related) and need to make an appointment with my GP it’s almost impossible to get past the Receptionist, “Is it urgent?”, “Are you dying?” “Can it wait?” – Yes, No and No are my usual answers, before I’m offered an appointment in 3 weeks time, on a Sunday, at 6.30am……….. #NHSCrisis!

I watch the news and see stories of people waiting in an ambulance for hours before a bed becomes available………. #NHSCrisis!

I read stories of appointments that have been planned for weeks or even months getting cancelled at the last minute due to staff shortages……………….. #NHSCrisis!

I know of at least one Dr. who’s already planning of emigrating to the far side of the world as he’s sick of working in the NHS ………….. #NHSCrisis!

Maybe, just maybe, the way to get first class treatment is to be really ill?  #DoingitforDani and I agreed last night that we’d rather get really crap service and not be ill, rather than the brillant treatment we’ve both received because of what’s wrong with us.

Finally for this week, and to inject a degree of levity, here’s an update on Neville. He’s getting on really well, now walks off the lead in the park or the woods, usually pee’s and poo’s outside, and has become much more of a character. The lady who's been coming round for his 1 - 2 - 1 training sessions is really impressed at how quickly he's learning. Now if he’d only stay in bed asleep beyond 5am!

As always, thanks for reading.

To be continued……..


#Shoulder2Shoulder

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