Gissa Job

(Out of Office on!) 

It’s pushing 10 weeks since my last blog update following our return from Corfu. As we’ve had another short holiday in the mean time I thought it about time I bored you with more snaps from our travels.

Before we get on to the fun bits I need to update you on the old cancer issues, after all that is how this Blog started back in December 2015. I’ve had some large lumps under my chin for a while which won’t drain with lymphoma massages. The nurse at the Sue Ryder Home was getting concerned so referred me back to the Royal Berks where the wonderful care I’ve had kicked back into gear. Within two weeks I’d had another MRI Scan, not as scary as I’d remembered the original one from last year, even with the scan having to be stopped half way through due to a power cut. The results were a bit non-committal, so a further ultrasound scan was arranged, again all in short order. It was then a case of waiting a week to get the results. All through this latest set of procedures I felt a bit like a fraud. I feel well enough, I’m at probably my heaviest weight due to CNS Jo telling me back in 2016 to eat as much as I could, and to eat high fat foods, she never told me to stop, so I blame her entirely. I’m probably at my fittest for a number of years due to exercising Neville twice a day. I mentioned this to my Consultant and CNS when I got my results. Firstly, everything is fine. I’ve got chronic lymphoma which I’ll have to manage for the rest of my life, but I haven’t got cancer again J Secondly, both Mr Cool Dude and Amy (CNS) confirmed that I wasn’t a fraud, and I didn’t waste anyone’s time. With my history of being pretty crap at getting better they’d always rather err on the side of caution. “See you in November, if you’ve ANY concerns then get in touch” were the parting words from Amy.

I’ve had one more visit to the hospital since the last update as my valve had begun to leak. I was due to see my usual Speech and Language Therapist, Caroline, but she was off sick. However I was told one of the Consultants “would have a go” (I kid you not). I showed up for my 2.30pm appointment to be told there was a mix up and I’d be seen at 3.30pm. No real problem as a good friend was also in clinic that day so we chatted about our various ailments until I was eventually called in. It was here that things started to unravel a bit, but in a quite amusing way. The Dr. who was going to change my valve was new to me, and it seemed like she wasn’t overly ofay with the procedure. Once the leaking valve is taken out we need to put in a puncture dilator to stop the hole from contracting. She was rushing hither and tither trying to find a dilator when I had one in my pocket as I always carry it in case of emergency. She eventually realised that me saying “Use this one” was probably a good idea. The next problem was what size valve did I usually have? Well, call me old fashioned, but I’d rather hoped that my medical notes would supply that answer. No such luck, so we had a bit of an experiment with a size 8 valve which just wouldn’t slip into the hole, before looking at the valve which had been taken out and trying a size 10 valve, which went in like a slippery oyster. It was only when I got home that I noticed the valve is sliding up and down unlike any valve I’ve had in the past. It’s also white whereas my other valves have been black. To cut a long story short, the wrong valve has been fitted, but it isn’t leaking so no major damage done and it’ll be replaced in the next week or so when a new one arrives from its European maker. This might sound like a moan but it isn’t. Despite staff sickness, my valve was replaced, it stopped the leak and I was able to drink and eat normally. And I like to think that I was a good guinea pig for the Dr. to practise her technique on. As an aside I’ve been advised that my valve is a 20 French 6mm, nope no idea what that means either. The main challenge may be that having a 10mm valve in will have expanded the hole in my throat that could mean I’ll have to be valve-less for a while whilst it contracts. All good fun.

Regular readers may remember that earlier this year I was on the Victoria Derbyshire show on BBC2 discussing my concerns regarding the possibility of shortages of my meds following a potential No Deal Brexit. With that possibility becoming more and more of a reality I was invited back onto the show to express my concerns. This time, instead of being filmed at the BBC studios, it was at College Green, opposite the Houses of Parliament. To be totally honest, I was way out of my depth. On one side I had the Dr. turned whistle blower of Operation Yellowhammer (The Govts. Plan to get medical supplies into the country). Dr. David Nichols. The other guests were a Left Wing activist who reminded me of a young Ben Elton, and a Conservative MP, Martin Vickers. Mr Left Wing Activist kept butting in, valid points, but could have shut up and let me have my say too. The MP was a disgrace, and even laughed at one point when we were discussing people who may die if they don’t get their meds. The Dr. was professional as you’d expect and Victoria was delightful. She met me before the show went live, chatted about how I was getting on and set my nerves at ease. I left feeling quite frustrated as I wasn’t able to get across a number of points I’d wished to. Once I was home I watched the recording on iPlayer and was shocked at just how poor my voice sounded. The combination of being outside and the muppets on both sides of the argument who kept chanting in the background made it very hard to understand what I was saying. My career as a media lovey is well and truly over, however I’m still available for Panto appearances, my preference would be one of the Ugly Sisters so that I don’t need to wear too much makeup. 

September is always an exciting month in the Clark household, it’s the start of the rugby season, the 17^th we’ve been involved in with Rams RFC! In those 17 seasons I’ve been a dad, a coach, a team manager, the mini manager, junior section manager, youth fixtures secretary, 1^st XV touch judge, and photographer. This season I’ve added a new title to the collection and become the manager of the Rams Sirens side. I must have been incredibly drunk when I agreed to that one. At the time of writing they’ve played two matches, winning one narrowly and losing one narrowly. They are a great bunch of ladies, and if anyone fancied trying out, we train on a Wednesday evening at 7.30pm………….. 

The Rams have started their first ever season in National 1 in dramatic style. Winning their first four matches leaves them in second place in the league, real nosebleed time. That doesn’t really tell the whole story as all four matches have gone down right to the wire. At this rate no one at OBR will have any finger nails or hair left by the end of the season. It’s a great introduction to a high level of rugby. Crowds are up, media coverage is great and the whole club is pulling together. The starting 15 so far this season has been made up of 14 players from last season and one player who was also playing at National 2 Level, so any claims that Rams have bought their success can be kicked well into touch. There is a true family (#Ramily) vibe to the club these days. The Mini's love coming down to watch their heroes on the pitch, and those heroes love the support they're getting. Club House Corner is becoming similar, if not better than Redruth's Hellfire Corner. 

I’m proud to be one of the shirt sponsors for the Mighty Cents, the Rams III’s. Max had his first introduction to adult rugby with the Cents and enjoyed two seasons before disappearing off to University. The team have the ethos of welcoming in new players and showing them how the game should be played, on and off the pitch. I’ve managed to watch one of their matches so far this season, and they’re looking good. I like to think the new kit helps J

We were lucky enough to have a week down in Cornwall in the third week of September. It’s not often you have to leave the beer garden to go inside the pub due to it being too hot at this time of year, but we were blessed with wall to wall sunshine. A week of walking on the beaches and headlands, lazy pub lunches, more beach walks, cosy dinners and early nights were just what we both needed. We managed to meet up with the one and only Sidney Thompson whilst we were away, Sidney is Neville’s half brother by another mother. Half an hour running around the beach, where Neville perfected his Oscar nomination for “Best Dead Dog” impersonation.

This was then followed by 40 minutes in a pub where the pups proceeded to charm all around them whilst they licked each other’s noses.

 It was Sidney who introduced us to the Kromi breed about five years ago, through our mutual love of the Porthcothan area of Cornwall. (I’ll admit to thinking he was a Jack Russell to start with, but he forgave me after I submitted the 500 lines of “Kromis aren’t Jack Russell’s!”) It was Sidney who let us know when Snuff (Nev’s mum) was having a litter and put us in contact with Jo. After dithering about saying yes, then no, then yes again (us, not Jo) we finally became Nev’s assistant. It’s his 2^nd Birthday today…….. a long walk in the woods with his new bestie Remy, follows by cakes, jelly and lashings of ginger beer all round! 

The last time we were down in Cornwall in March I’d booked a guided photography tour with the very talented Kate Whiston. Landscape photography had never been my forte, but three hours walking with Kate revived my interest in the genre. When I posted on FB that we were back down to Cornwall Kate messaged me to invite me on a walk from Trevose Head to the Lifeboat station to shoot the weekly practise launch from an angle not often seen. It was a great evening, albeit a tad chilly (I’m wearing shorts until October 1^st unless I need to wear a suit for work). I was really pleased with the results of the shoot, albeit I should perhaps have pulled out a bit at the launch to get the station in the shots as well as the boat. 

Cornwall in September, when the weather is good takes a lot of beating. Blue skies, blue seas, empty beaches, pubs serving great food. 

If you could guarantee the weather why would you go abroad? The pub lunches were spent at the Cornish Arms, one of Rick Steins places. We’d eaten there before and been impressed by the food, but not always by the service. This time both the food and service lived up to the expectations. The waiting staff and generally young folk and I guess are on a learning curve in the Stein empire. Two young ladies stood out for us. One was really interested in Neville as she’d never heard of a Kromis. The other introduced herself by say “Sorry, I’ve got a sore throat, so my voice isn’t great…………..” I replied “You think your voice is bad?” She laughed, which was exactly the response I’d hoped for. We didn’t go for three course meals at lunch time, just a pair of starters each with a glass of wine. Mackerel fillets, mussels, devilled kidneys, perfect for a lunch time snack. 

Evenings were spent on the beaches and back to the caravan for dinner, the fresh air meant we were pretty knackered and didn’t fancy eating out, other than the ritual trip to St Petoc’s Bistro for wonderful seafood.

One of the things that by now I should have down to a fine art is packing enough of the daily medical supplies I need to keep myself going whilst we’re away. When we fly abroad I pack two identical toilet bags with double the amount of base plates, filters, wipes etc that I need in each bag. One goes into hand luggage, the other into hold luggage, that way if the hold luggage gets lost I’ve still got enough supplies. Before traveling down to Cornwall I packed up one of the toilet bags with plenty of supplies to cover the five days. It was only when I needed to change a base plate on the Monday that I opened up the toilet bag to find I’d packed the wrong one. No base plates, no filters, no wipes, nothing of any use at all apart from a torch and a mirror. At this point I was contemplating a 10 hour round trip back home to pick up supplies to get me through the week. However, luckily I’d packed my travel camera bag which had a couple of base plates in it and a few filters, and then I remembered the bag I keep in the car which also had a couple of base plates in it. So long as I didn’t have any problems I’d have enough to get me through the week. Carol has now insisted that she’s going to check all my packing before we go away again as it turns out I’m a bit of an idiot.

When I was originally given the Cancer diagnosis way back in December 2015 I was worried about how my employers, Santander UK, would react. Throughout all the rubbish I’ve been through the past 4 years or so they have been nothing but supportive. I was made aware in the early days of Chemo and RT that a number of large companies operate a “Manage Out” policy to employees who have cancer. I have been so lucky to be working for a company who operate a “Lets support” policy. My immediate line manager and the team I work with have been understanding of my limitations, especially since I became a Lary. However, since June 2017 when my voice box was removed I have found it increasingly difficult to complete my job in a satisfactory manner. Communicating in a business or social manner is something I dread. I hate having to meet new people and to have to speak to them, be it face to face or over the phone. It is clear that I’m never going to improve on where I am at the moment, and that I’m really not fit for purpose as far as my job description is concerned. I was beginning to feel very depressed about the working week and the Sunday night dread crept back in. With that knowledge I’ve been in discussions with Santander to take a Settlement Offer. My final day with the company was today, I’m very grateful for the understanding I’ve been afforded. I’ll still need to do something to make a living, perhaps working on the fish counter at Waitrose for four hours a day (Not including weekends when I’ll be watching the Rams!). Maybe Carol and I will do a world tour of the UK in a camper van, copying Peter and Jane. Maybe I’ll write another book, or even finish the one that’s been in draft for two years. Maybe I’ll take my photography more seriously and try and earn some £’s. Maybe we’ll win the lottery and buy that house on the cliffs at Porthcothan. Maybe we’ll retire disgracefully and embarrass the children……………………… So, as the title of this blog says………….. Gissa Job.

As always, thanks for reading.

To be continued…………….

#Shoulder2Shoulder

Life as a Lary in foreign shores.

This blog update is going to focus largely on what it’s like being a “Lary” in a foreign land, plus some tales from Arillas. For those of you who may be new to reading my ramblings, a “Lary” is someone who’s had a total laryngectomy due to a reoccurrence of throat cancer and now speaks and breaths via a hole in their throat. My voice, which used to be quite deep now sounds like a rather camp Darth Vader.

In the two years that I’ve been a “Lary” we’ve been abroad three times and holidayed in the UK another three times. With the exception on getting some fine sand in my stoma when we were on Gran Canaria and having to resort to a rather fetching bandana 

 

I’ve not really had too many issues with being away from the comfort of home. Normally when flying I’ll pack three separate supplies of medical kit to cover the trip. One to go into my suitcase, one into Carols and one in my hand luggage. This should cover all issues with lost luggage. Daily I have to use filters, sticky base plates, cleaning brushes, adhesive removers, cleaning towels, skin barriers to name just a few supplies. This time I put two sets into my luggage and one incomplete set into my hand luggage!! On arrival at our apartment in Arillas I soon discovered that between the three packs of supplies I’d only packed the very bare minimum to last the 10 days. I was going to have to hope that I didn’t have many “Blow outs” and that my throat didn’t react to the heat and dryness. Whilst on the subject of packing, I’d also forgotten a couple of lightweight t-shirts, my Rams gym shorts and a second pair of swimming trunks. Razors, enough handkerchiefs. E45 cream, you name it, I forgot to pack it. Overall a bit of a Horlicks before our holiday had even started. Carol has vowed to go through my suitcase with a check list before we go away again in September. The flight out was uneventful and only about ½ full, meaning we both had room to spread out and enjoy the Hendricks and Tonics. Corfu is two hours ahead of the UK so it’s entirely acceptable to be drinking G&T’s at 7am GMT. The only problem I had on the flight was when we started the decent into Corfu airport. The change in pressure made my ears hurt like heck and as I can no longer clear by holding my nose and blowing out I was in a fair amount of pain for a good 40 minutes. Eventually it cleared, but not at all pleasant. I’d like to add how kind the stewardess was on our flight, she could see I was struggling, both with my ears and my stoma and was happy for me to visit the toilet after the lights had gone on for seatbelts to be worn for landing so that I could clear the stoma in private.

We had stayed with Anna Krasaki and her family at Anna's Studios four times, both as a family and as a couple. The apartments are always spotless and whilst not the 5* luxury of the Canaries they are more than adequate for our stay. We only really used the apartments for sleeping in to be honest. There is a lovely pool to enjoy, if you haven’t got a stoma in your throat that is of course. I don’t normally miss being able to swim, but the combination of 30+degree heat and a couple of small glasses of Corfu Brewery IPA had me making my way down the steps of the pool and sitting on a handy ledge. Carol was keeping a close eye on me, knowing my ability to be a bit of a dick at times, but I was happy as Lary (Sorry, couldn’t resist!) sitting on the ledge enjoying the cooling pool. To me it was a pretty big step. I did venture into the sea as well as the pool but was much more careful, only venturing as deep as my waist and then only when the sea was dead calm (& usually when I needed a wee!). When we’ve holidayed on the Canaries or in Cornwall I’ve not risked the sea as it’s rougher and more unpredictable than the Med. Whilst I couldn’t keep Carol company whilst she was enjoying herself swimming, as least I could have a bit of a paddle to cool off from the midday sun.

 Again, for those new to the blog, the stoma in my throat leads directly into my lungs, so if I was to go too deep and lie back too far I’d get water flowing into my lungs and effectively be drowning. I’ve done in once, in the early days, whilst having a bath, it took a good two days to get over the effects.

As always when I go abroad, or indeed anywhere where I’m meeting new people I worry about their reaction to the way I sound. I’m not so bothered about the way I look as I’ve never exactly been a stunner, but the way I sound does concern me. Without exception, the Greek people we met only treated me with respect and politeness. In some way sounding and looking as I do has advantages. The people who own the restaurants we ate in would remember me (they may well have never met another Lary), they would remember the cocktails we ordered (Black Russian, Pina Colada and Gin Fizz – 3 for 2), they would remember the wine we ordered. The only adverse reaction we had the entire break came from an English woman who insisted on turning 45 degrees to stare at me every time I spoke in a restaurant. Initially I ignored it, but after 90 minutes or so of being stared at I was getting a little bit upset. What she should have been doing was talk to her morbidly obese husband about his eating habits rather than staring at me. As we left she made a point of again staring at me, so I apologised to her that the “Entertainment” was leaving early. She didn’t take too kindly to my comment, but tough. On the upside, that evening I experimented with taking photos of the wonderful sunset on my iPhone through the bottom of a glass. I was quite pleased with the result.

We've always commented from our trips to Corfu how much the Greek people seem to like children, never more evident than when we went to the local festival held one evening whilst we were there. Midnight, drinks flowing, lamb cooking on the spit, Greek music being played by the band and loads of local kids running around, having fun and annoying no one at all. It was a strange evening as it was aimed at locals rather than tourists, we hadn’t a clue what was going on, but it was highly entertaining. we were told afterwards that it's used as a good excuse to meet up with other friends from neighboring villages who you may not have seen for a few months. We made our way back up Cardiac Hill and I conked out within minutes, that’ll be the 3* brandy I was drinking. According to Carol the festival was still going strong at 2am J

 I’ve struggled when we’re away with the portion sizes of food served in restaurants, this holiday was no different I’m afraid. Be it Corfu, Fuerteventura or Gran Canaria I just can’t eat huge portions of food these days and I feel guilty if I leave half the portion on a plate. Due to the surgery I have to chew food almost to the point of a pulp before I can swallow it properly, otherwise the valve gets gunked up. This means that as well as eating far more slowly than a normal person, I also lose my appetite fairly quickly. It sounds quite weird, but the more expensive the restaurant, the smaller the portions served. You can eat out very cheaply in Arillas, one of our favourite places is Gratesla. It’s a traditional taverna run by a family. It was nice, on our first night, to be remembered, genuinely, for our previous visits in years gone by. The food served is fresh, mainly fish, tasty and one portion would feed the entire front row of the Rams 1^st XV J Two courses, wine, coffee and a cheeky brandy rarely came in at more than 5. We ended up using Gratesla mainly for lunch as it was so popular in the evenings that the service suffered a bit. We’d have three or four hours on the beach, then retire for a leisurely lunch. Three starters or a fish meze shared between us with a ½ litre of dry white wine. Walk up heartbreak hill and an afternoon snoozing by the pool. Evening involved a G’nT at Anna’s lovely bar before strolling down the hill to the cocktail bar for our 3 for 2 offer, and then deciding which restaurant we’d frequent. Horizon, relatively expensive for Arillas, but top quality. Thalassa, great food and superb service. Ammos if we were feeling like a bit of a different choice in cuisine. It was a tough holiday as you can tell. A strange quirks of Greek cooking would seem to me to be the relative lack of spices involved. The majority of dishes will have an overload of oregano, perhaps some basil or rosemary, but not a lot else. I can manage for 10 days, but I was craving a bit of chili or perhaps some paprika by the time we got home. All the restaurants had in common one thing, that was the total work ethic of the staff. It wasn’t uncommon to see the same staff working at lunchtime and again in the evening. It’s a case of making hay whilst the sun shines. Work hard from May until the end of September, and then sleep for 5 months!

We both noticed on this visit that Arillas is smartening itself up. The restaurants look better, there’s decking on some of the frontage, a coffee shop has opened which served lovely fresh croissants and a decent coffee too.  There was no rubbish lying around at all, unlike Corfu Town which had rubbish piled up in bags on every street corner. They’re even beginning to embrace to idea of recycling, albeit in a small way, but it’s a start. We did our bit by refusing plastic straws with our drinks, again a small gesture, but a start. Far fewer people seemed to be smoking, even the Greeks who must be amongst the largest population on smokers in Europe seem to have largely packed in. It was nice to sit on the sand on the beach and not to be picking fag butts up! Some of the restaurant owners mentioned that so far the season had been quiet compared to previous years, they were mainly blaming Brexit and I’ll admit we did delay our booking somewhat on the back of possible disruption. But with St Theresa of May dithering until October we felt we needed to get away regardless. It’s been a challenging 2019 so far, what with the MRI’s, Fine Needle Aspiration, biopsies, skin cancer and other scares, so it was good to just relax totally and forget about the trials and tribulations of the real world.

I've become aware that in the very few photos that have been taken of me since becoming a Lary that I’ve had my hand up by my throat subconsciously covering up the stoma, as if I’m embarrassed of it. I made the decision that on this holiday I’d “come out” and just bare all for the camera. It’s not like I can change things, or that suddenly one day my voice box will magically grow back. Also as I was often dressed just in my budgie smugglers and a smile there seems little point in hiding the plastic protruding from my neck. So from now on it’s me, my ugly face, crocked nose and my Lary. Maybe holding a Pina Colada in a fake coconut shell with pink flowers……………. 

In some way before we left for Corfu I’d been secretly dreading it. I thought I’d struggle with the heat and the walk back to Anna’s Studios. When we arrived and I found I’d made a total mess of packing my supplies I was really worried how I’d cope. Well I’m pleased to say that the hill wasn’t as hard as I envisaged, probably helped by the intake of Black Russians, Gin Fizzes and Pina Coladas. And my medical supplies lasted far longer than they do in the UK. I normally change the base plate every day and use a different type at night. On Corfu they were last up to three days without needing to be changed. I didn’t need a more soothing one to sleep with either. Perhaps assisted by the generous 5* Metaxa I had before bed. The filters would last a day and a half or longer, rather than being replaced about every 10 hours at home. Maybe the local red wine helped. Normally at home I’m having to stick a cleaning brush into my speaking valve four or five times a day, on Corfu it was once in the morning and that was it. Maybe the pre-dinner G’nT helped. So, in conclusion I think I need to live in a country that has a warm and dry climate and cheap booze. I’ve set up a Just Giving Page and all donations would be appreciated www.getclarkytoawarmclimate.com

In all seriousness, it was a great holiday, one where I hardly noticed the fact that I’m now two years into being a Lary. Pretty sure the #Stalker enjoyed herself too……………………………. 

....................... she was 90% fueled by alcohol! 

(Just for a change all photo's on the blog were taken on my iPhone as I forgot to take my DSLR with me.............. ) 

As always, thanks for reading.

To be continued………………

#Shoulder2Shoulder

The Good, The Bad, and The Ugly

This will be a brief update as the last 6 weeks or so have been pretty quiet and uneventful. I finished my last blog update after I’d had a Fine Needle Biopsy on the lympth nodes in my neck. The NHS lived up to my expectations by phoning my at around 6.30pm on a Friday night to tell me that the biopsy had come back with the results showing the nodes were reactive rather than cancerous. “The Good”. Great news to receive ahead of a weekend watching the Rams beat Canterbury and the U7s beat the U8s in a water fight at the End of Season Presentations.

The remainder of May was pretty standard, lots of dog walks, including Nev’s first visit to Nino’s for lunch, first with Anna, then with Carol and finally with Max. (Anna was the most expensive companion!)

 I was also following a friend of mine who was hiking in the Himalayas and had taken a Rams cap with him. I’d asked Chris to take photos of Rammy the Cap at various high points, and he duly obliged. 

In a rare (???) moment of madness I seem to have volunteered to become the new team manager of the Rams Sirens. Why I think I can manage 30+ ladies who play rugby I’ve got no idea, I have enough problems managing to work out where I’m supposed to be each day. But I guess it’ll be a blast until they realise I’m a psychopathic megalomaniac……………………… 

Regular readers may remember that I was due to undergo some plastic surgery to remove a Basal Cell Carcinoma (Skin Cancer) from my upper cheek, I knew it wasn’t an urgent procedure and wasn’t overly surprised to be still waiting at the beginning of June. However, on Monday of this week I received a call asking if I was able to attend the Day Surgery Clinic in Thatcham to have the operation the next day. All I was told over the phone was that my appointment would be at 12.30. Here’s where “The Bad” starts. I arrived about 12.15, eventually sussed out the most confusing parking machine in history and checked in at reception. It was here that I began to think I’d possibly misunderstood the phone call of the previous day. I was told to take a seat and wait to be called up to the Day Bed Unit. At around 12.30 a nurse came down and asked who was waiting for the Plastics Clinic? Four of us duly replied. Two chaps in their 90’s and another bloke about the same age as me, minus a “Lary”. We trooped upstairs to the ward where the two 90 years olds were shown into bays whilst the other bloke and I were shown into an open waiting area and told to get changed into theatre gowns. I’m sure most of you are familiar with the garment. It ties at the back and allows your backside a fair degree of freedom to the elements. We were given an additional gown to wear as a dressing gown to protect our modesty. I was glad I’d worn clean underwear, indeed that I’d worn any underwear at all. I was under the distinct impression that I was being treated with a local anaesthetic and wouldn’t need to strip down for the op.

We had been told that the Surgeon would come round and see us and then we’d be told the order of the list. At about 1pm my gown clad companion was called into the main ward area to see the Surgeon, after about 10 minutes she came to see me to run through the procedure, I was still sitting in the open waiting area. She was surprised that I was driving myself to and from the hospital as I should have been told not to drive, she was also surprised that I hadn’t been advised that I was part of a list, rather than a specific appointment. The next real contact I had with a member of staff was at around 3pm when I asked one of the nurses when I’d be told where I was on the list for surgery. She thought that I hadn’t already been told, but eventually came back to say I was last. I knew that the two old guys would be seen first, and that was quite right, they’d earnt the right to go ahead in first. I was still sitting in the open waiting area with medical and admin staff wandering past and relatives coming onto the ward to pick up patients who’d already been treated. 

It was around this point that for some reason or another I began to get a bit upset. Here I was, not the best communicator in the world, being stuck in an open area for the whole world and his mother to see, whilst everyone else was ensconced on the ward. Now it wasn’t just the four of us, as the ward was shared with two other procedures, I’d seen at least three people leave the ward to go home, so there must have been free bays, yet I was still stuck by myself.

At about 5pm, four hours after I’d changed into my fetching attire I was eventually advised by one of the nurses that I was due into theatre. I’m afraid at this point I vented. Why, if I was last on the list, was I asked to change into gowns over four hours previously? Why had I been left to sit in an open waiting area when there must have been free bays on the ward? Why had no one had the courtesy to advise me of the delays? I was seriously unhappy, pissed off and distressed about the whole humiliating experience. The nurse I vented to had no answers, she retreated to the nurse’s station and said in a voice loud enough for me to hear “He’s not very happy”. No Shit Sherlock!

A short while later I was shown into the operating theatre. The surgeon apologised profusely for the delay and said she’d be speaking to the staff at RBH about the lack of info I was given over the phone regarding the appointment. Four injections were administered to numb the area around the tumour, a certain amount on improvisation was needed to protect my stoma for any leaking fluids (Blood I presume) and we worked out a thumbs up / thumbs down system for any questions the surgeon needed to ask. Then the digging out process commenced. It wasn’t painful at all. I could sometimes feel a bit of pulling and pushing, but no pain. In fact I almost dozed off.  After about an hour I was led back to the same waiting area and told I could get dressed again.

The next day I wrote an email to the feedback team at RBH complaining about the way I’d been treated. A phone call was received that morning asking for my date of birth as they couldn’t find me on their system. I was struggling with my voice a bit and the caller hung up on me. I’m not going to take the matter any further as it’s just not worth any upset to me. I’ve no idea if any of the staff from the RBH still read this blog, if they do then perhaps they could pass on the “Could do better” message. I would add that in the four years I’ve been going through the cancer wringer I’ve only had two bad experiences out of perhaps thirty or so procedures, but both could so easily have been avoided.

“The Ugly”  

Amongst all the crap that has been 2019 so far it had become obvious that the Current Mrs C. hadn’t had a holiday to speak of yet. So, at the end of this month we’re flying off to Corfu for 10 days, staying with our friends Ioanna Krasaki and her lovely family in the tiny resort of Arillas.

Five or six tavernas, three or four bars, a lovely beach and sod all else. We first stayed with Anna when the kids were 11 and 8 I think, this will be our fifth visit. The apartments are fairly basic, but spotlessly clean. There’s a lovely pool to sit around and of course a homely bar which serves wonderful Greek omelettes, 5* Metaxa and coffee you can stand your spoon up in. The only downside is that Anna’s is situated at the top of a hill overlooking the village. We’ve previously named this “Cardiac Hill” with good reason. Anna’s family also own one of the local car hire companies and the last time we were there I’d send Carol in to chat up Tasos with a view to getting a lift up the hill, sometimes it worked. This time she’ll have to up her game as he’s now a married man.

I don’t think we really plan to do much more than walk to the beach, sit by the pool, eat, drink and relax. Many, many times I think back at the crap I’ve put Carol and the kids through over the last four years and the support I’ve received back with never a murmuring of complaint. Max has finished his first year at Uni and will be off to Crete with Laura soon. Anna is settled and happy in God’s own County. Time for Carol to get some well deserved TLC, so long as she’ll drag me up Cardiac Hill.

As always, thanks for reading.

To be continued……………….

#Shoulder2Shoulder

That End of Term Feeling…….   

The last couple of months have involved a bit more investigative treatment into some problems I’ve been having with my neck. That got me thinking about all the treatments I’ve undergone over the past 3 + years. Before I expand on what’s been going on I thought I’d give a quick break down of all the treatments I’ve been subjected to.

Treatment                   Description                                                              Discomfort Level 

CAT Scan                     Lie down, not painful. Scans the body for nasties.  3 - Slightly claustrophobic.

Biopsy                         Take a sample of body tissue to test for cancerous cells.     3 - General Aesthetic, so a bit sore the next day.

PET Scan                     Similar to a CAT Scan, but does the whole body.    5 - More claustrophobic than a CAT Scan and went on for longer. 

Fine Needle Aspiration Taking a biopsy using a non-invasive procedure.     8 - Bloody painful and uncomfortable. Hated it!

Radio Therapy               Zaps the bastard that is cancer with radio waves.     7 - Far worse than I envisaged. Made me feel god awful.

Chemo                            Zaps the bastard that is cancer with chemicals.         5 - Not as bad as I thought. Made me feel tired, but no sickness or hair loss.

Surgery                           Cuts out the bastard that is cancer.                             6 - Pain levels were very low, obviously the long term effect was major.

Ultra Sound                     Cold gel, magic camera, bit of Witchcraft.                1 - Pushes a bit on the scars of surgery, but no real problem.

MRA Scan                       Similar to a CAT / PET Scan.                                    8 - One of the worst experiences of the last 3 years. Hugely claustrophobic and incredibly noisy. HORRIBLE!

Life                                   Breathing, eating, working, being “normal”             7 – A lot more difficult than I’d hoped it would be.

About two months ago I noticed a lump developing on the right hand side of my throat, roughly where the original cancer had been. It grew to the size of a lemon and was obviously concerning to me. I mentioned it to the Consultant on my regular check-up and he agreed that it needed a bit of investigation. Firstly he booked me in for an Ultra Sound to see if that could ID the problem. Up I rocked to the RBH, wearing a Rams top (there’s a surprise) to be greeted by the Dr. who’d performed the Fine Needle Aspiration on me back in January 2016. He recognised the shirt, and I recognised him. His two sons both play for Marlow RFC which we’d talked about in the early days. He performed the scan, and reckoned it all looked ok on the swelling, he thought it was probably down to muscle growth. I left feeling pretty relieved as my record of being not very good at getting better is pretty good. I was a bit concerned to then get a phone call from the Consultant to say that he’d like me to have an MRI Scan to see if there was anything going on that the Ultra Sound had missed. Dotting the I’s and crossing the T’s I hoped. I was quite surprised when the appointment came in for 9am on a Sunday morning! After having had CAT Scans and PET Scans I wasn’t really worried too much about a MRI. My God I was wrong. It was truly horrible. I was strapped in so I couldn’t move an inch and then the machine started. For the next 40 minutes I couldn’t move and was subjected to a series of beeps, buzzes, squeaks and crashes that really got inside my head. A couple of times I was very close to sticking my hand up and shouting “I’m a coward, get me out of here”, but I just about managed to get through it by closing my eyes and trying to think happy thoughts. Again I was concerned to get yet another call from my Consultant to say that whilst the swelling on my throat was indeed just muscle growth, they were concerned about some abnormal nodes that had shown up on the left hand side of my neck. He’d booked me in for another Fine Needle Aspiration procedure (see above for the pain levels!). Suddenly, when I thought I could get on with life, I took a massive curve back to thinking “What if?” I went to a very dark place.

A bit of levity was brought to the proceedings when I replied to a Tweet by Victoria Derbyshire, of BBC fame, asking if anyone was stockpiling any sort of supplies because of potential issues with Brexit. I said that I’d been over ordering my Lary supplies for about six months as they all came from an EU country and I didn’t want to risk being without what I class as essential supplies. I was contacted by one of the members of the production team on Victoria’s daily BBC2 show to ask if I’d be able to appear the next day to discuss my concerns. Without really thinking about the possible consequences I agreed to travel up to the BBC studios on Regent St and have make up put on me. Bright and early on the Wednesday morning I arrived at the Beeb, getting through reception was a challenge, as was meeting the “runner” who was sent to meet me, they obviously missed the bit about I’d be a neck speaker. Eventually I was shown into the Green Room which despite my expectations didn’t have wall to wall free booze and dancing girls. Instead the room was fairly drab, had cardboard boxes in the corner and two flasks of tea or coffee, not even a digestive biscuit. I was there about five minutes when in walked another victim for the show. This chap had travelled down from Norfolk to talk on the show about how he was stockpiling canned and frozen food, he was under the impression it was going to be a light hearted discussion, seeing me sitting there complete with Lary seemed to shake him a bit. Poor lamb J

Victoria came in and introduced herself before we went live. She took a good 10 – 15 minutes chatting with me about the procedures I’d been through, how I coped and my concerns. She showed a huge amount of empathy to me, as a fellow cancer victim herself. We were shown into the studio about 10 minutes before going live, it was fascinating to see how a TV show works. Even up to 2 minutes before going on air the script was being changed. Victoria has told us not to look at the cameras when we were talking and to try and treat it just like a conversation. I thought I’d struggle, but once we got going it seemed quite easy. It helped that one of the other guests who was beamed live from her home in Glasgow was also discussing her concerns about the continued supplies of her husband’s medical supplies. I did feel a tad sorry for Mr “Canned and Frozen Food” as he was a little out of his depth. After about 20 minutes our portion of the show finished and we were ushered out of the studio, down the corridor and back into the bright lights of Regent St. My 15 minutes of fame were over, back to the day job, unless of course my phone rang with offers of Panto in Weston-Super-Mare………….

…………………… no phone calls from Movie Moguls, no calls from Panto Agents, just a bunch of Tweets accusing me of wasting NHS resources, being a hoarder, and other such total bollox. For the record, the kit I order has no sell by date, so if there isn’t a problem with whatever type of Brexit is finally agreed then I’ll just under order for the next few months following the agreement. Maybe next time I’ll think a bit more before agreeing to go on live TV. And, also for the record, my shirt was red, not pink J 

In my last blog post I wrote how I hoped I’d be able to mention that Rams had won their league the next time I published. I’m really pleased to say that on a balmy April day I travelled down to Clifton RFC and witnessed one of the most complete performances of the season from the team as they ran out comprehensive 45 – 21 winners to take the league title. This means that next season Rams will be playing in National League One, the third tier of rugby. From a side I started watching when they were Level 8 this is a massive achievement. Everyone involved with the club should be hugely proud of the achievement of the players, support staff, coaches, and all the other people who put in the effort week in, week out to get the team on the pitch. 

 The 15 a side season is just about over, soon it’ll be time to focus the lens on the 7 a side festivals and the return of the mighty Badgers,

 

and the second season of the Sirens 7s side 

 Carol and I are hoping to get down to Newquay in June to watch Max play, of course the fact that it’s not far from our beloved Porthcothan has nothing to do with it at all, honest ‘guv.

I’ve mentioned in past blogs about the “Lary Group” I attended at the Royal Berkshire Hospital a few times. It’s not really for me, but the work they do to promote Lary’s, or Neck Breathers as we’re also known is invaluable. A recent article in the Reading Chronicle highlighted a concert that the Lary choir would be holding at a local school. Two members of the group I attended will be singing in the choir. However what got me about the article was the fact that social isolation the public perception were both mentioned as a major problem of being a Lary. Over the last 19 months or so since I had the chop I’ve become more of a recluse, more inclined to go home and hide, less able to hang around and try and converse. And that’s with my friends…………… When it comes to strangers I really just try and avoid scenarios whereby I may have to interact in a vocal manner. The one area it’s been ok has been when I’m walking Nev in the mornings. We tend to go to the same place most days, and at the same time, so we meet the same people. There’s something about walking a dog that makes you say “Good morning” to a fellow dog walker. Eventually you start chatting as you walk the same walk, you get to know people’s names, a bit about their back story, all because you happen to be the assistant to a dog. The other really easy interaction is with kids. Nev & I often visit the local coffee shop on our afternoon walk, invariably there will be pre-school kids there who want to stroke the “Disney Dog”. Now that he’s a bit more mature Nev doesn’t mind being petted too much, so long as he gets a few dog treats to compensate for his indignity. I’ve noticed that when the kids are asking me if it’s ok to pet Nev that they don’t bat an eyelid when I croak back at them, oh how I wish everyone reacted the same way as the children do. Work is really difficult at the moment, I’ve no confidence when it comes to speaking to customers either over the phone, or face to face. I really need to get my act together, bite the bullet and accept that I’m not normal, but I am me.

The Easter weekend was spent visiting Anna and Tom up in Leeds. Like just about the whole of the UK we benefited from a mini heatwave. Yorkshire in the warmth and sunshine it a truly beautiful county. We visited a few local sites during our stay including one morning and early afternoon spent walking around Knaresborough Neville enjoyed his stay "Up t'North" even if he struggled to understand to other dogs and their strange accents. 

On Wednesday of this week I was back at the RBH for the next and hopefully final procedure for a while. It stated off with another Ultra Sound to see whether I needed a Fine Needle Aspiration (FNA) following the MRI. It took a good 10 to 15 minutes of pushing on my sore and scarred neck to ascertain that yes, they would need to stick needles into my neck. It hurt, it hurt a lot. The neck area they were exploring was the area most invasively affected by the surgery I’d undergone in June 2017. There is little or no muscle left in that area now, so each time the needle entered my neck there was no protection. The process of obtaining cell samples for a biopsy involves twisting the needle around once it’s in my neck. The best way of describing it is to think about a corkscrew being inserted into your neck and then twisted to get an errant cork out. After 40 minutes of total unpleasantness I was finally free to go. I asked the Dr. when the results would be ready. His answer of 5 to 10 days, but they’ll contact you if there’s a problem didn’t go down well. I need to know if the news is good, not if it’s bad! An email to the CNS Team asking for the results to be given to me one way or another has been sent……………………… Two days on and my neck is still incredibly sore and bruised.

After a fairly quiet week I’m looking forward to traveling to Canterbury on Saturday to watch Rams finish off their league campaign. It should be a good match as Canterbury have finished runners up in the league, behind Rams. Sunday sees the end of the Mini and Junior rugby seasons. I’ll be at OBR to photograph the Mini’s as they receive their End of Season awards.

That’s all for now folks.

As always, thanks for reading.

To be continued……………..

#Shoulder2Shoulder