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

Bouillabaisse, Sashimi and the hottest pea puree in the world!

This past week has been all about gastronomic and photographic delights, with a couple of curve balls thrown in for good measure. Carol, Neville and I had four days down in our beloved Porthcothan Bay and I had no intention of cooking any meals other than perhaps breakfast, so the local restaurants and pubs were in for our company whether they liked it or not.

Regular readers of this blog will know by now that I’ve been visiting Porthcothan for pushing 50 years now. The journey is about four hours with a stop for Nev to stretch his legs, and by the time we get to Wadebridge it really feels like we’re coming home. This visit was extra special as I’d booked a guided photography walk with a local photographer I’d been following for a while on Facebook. Kate offers various walks in the area of Padstow to photograph the stunning scenery and get advice at the same time. Landscape photography is a genre that had largely passed me by over the past 40 years or so, and I was keen to gain some knowledge on the subject. I was not to be disappointed. We met Kate at the ferry in Padstow to cross over to Rock and begin our three hour walk along the beach to Daymer Bay, and back to Rock along the dunes. Carol and Neville were along for the ride too, this would be Nev’s longest walk to date and I was a bit concerned that it might have been too much for him. Oh silly me, he was in his element! What followed was a very pleasant three hour stroll, chat and lesson in photography. Kate is a patient teacher. The tips and tricks she gave me have enthused my love of photography even more. I’ve already planned out some shoots in and around the Berkshire area to hone my new found skills.

Kates work can be found on her FB page Kate Whis Photography which also links to her main webpage. I can’t recommend her enough if you happen to be in the area and enjoy photography. The remainder of the break was spent practising what I’d been taught and trying to get Neville to stop running in front of the lens every time I’d set a shot up. He loved his time on the beaches, chasing after his ball, digging holes and generally acting as a dog should.

Each day we walked around 10km on the beaches, probably as far as I’ve managed since becoming a Lary. Each night we were ready for bed by 9pm, a tired but happy triumvirate.

As I mentioned at the beginning of this blog, I had no intention of cooking whilst we were away. Our first port of call was the pub nearest to where we were staying, the Tredrea Inn overlooking Porthcothan Bay. This pub has some of the most spectacular views imaginable, it had also gained an unenviable reputation for poor food over a number of years. I’m so pleased to say that down to the hard work of the staff and owners it now has a 5* Food Hygiene rating and serves wonderful home cooked food. It also serves a rather good pint of Doombar! We were greeted by Steph like old friends when we showed up for lunch on our first day, I do suspect however that she was more pleased about getting Kromis kisses from Neville.

Our next venture out to eat wasn’t quite so satisfactory. The Cornish Arms in St Merryn is owned by Rick Stein, more of whom will be mentioned later. We’d eaten there on previous visits and loved the food and atmosphere. I’m afraid this time the same can’t be said. Both visits this year produced lovely food, however the second time it took the best part of an hour to be served two plates of hake and chips, the restaurant wasn’t busy, it just seemed from the faces of the waiting staff when we questioned the delay that they’d forgotten the order. This happens and is not a major issue. What is a major issue however is staff moaning about each other when paying customers are within ear shot. This happened on our first visit of the week. We were sat in a corner booth with Neville. The table next to us was occupied by two members of staff who seemed to be off duty but who were holding court with staff who were serving customers. They were moaning about other members of staff and generally behaving in a very unprofessional manner, certainly not something I’d expect from a Stein run business. I felt quite sorry for the waiter who was looking after us as he’d explained it was his first night in the job. He was fine, but some of his colleagues I suspect will be looking for new jobs in the not too distant future if they continue to act in such a manner.

Now for the other side of the PadStein empire. One of our guilty pleasures when we’re down in Porthcothan is to visit the world famous Sea Food Restaurant in Padstow. We’d booked a fairly early table for dinner on the same day we’d done the walk with Kate, figuring we’d both be fairly well knackered. Here’s where the reference to Derek William Dick AKA Fish comes in. It was only after we’d ordered that we realised we’d gone for two albums by the big man, Sashimi and Bouillabaisse (guess you had to have been there!). My sashimi was sublime, served with picked ginger, pickled bean sprouts and the hottest pea puree in the world, it very nearly blew my head off J As always the food was to die for, the service just perfect and the ambience lovely. I can only suggest the Rick passes on some tips to his staff at the Cornish Arms.

It was with a heavy heart that we had our final walk on the beach at Harlyn Bay on Thursday before starting the long journey back to Berkshire. We’ll be back, soon!

Finally, a couple of housekeeping points to bore you with. I’ve had my appointment with the Plastic Surgeon who confirmed that the lumps on my face are indeed skin cancer, but dead easy to cut away with no lasting effects. Carol had asked me to mention a few other bits and pieces she’d like looking at whilst I was under the knife, but the poor surgeon was running late and it didn’t seem right. Hopefully I’ll be under the knife in the next few weeks.

It wouldn’t be a blog unless I mentioned rugby at some point. Last weekend saw the Rams Sirens finish their season on a high with a victory over Hackney Ladies RFC

This weekend sees the Rams travel to Worthing RFC. Five more games to go, twelve points clear at the top of the league, can we dare to dream?

As always, thanks for reading.

To be continued…….

#Shoulder2Shoulder

"Hot Rails To Hell"

Happy Places, Lost Friends and Rock 'n Roll

The beginning of 2019 has been quite reflective for me. Despite my own assurances that I won’t “look back” I’ve spent a fair amount of time reviewing where I was three years ago. I was in a really crappy place, getting towards the end of the Chemo / RT cycle and suffering like heck. It’s so easy to think to yourself “This time three years ago………..” that’s not a healthy place to be, life is forward, not backwards. So, to elevate the gloom we’ve booked our first holiday of the year. Three nights in Porthcothan, our “Happy Place” in March should go some way to getting me back on track. As well as the traditional evening at the Seafood Restaurant I’ve also booked in for a guided photography walk with Kate Whis Photography for the Tuesday. We’ll be walking from Rock to Daymer Bay and taking photographs as we go. I’ve been following Kate on Facebook for a while now, her photos are superb and resonate with me due to the locations. It should be a good morning, three hours of walking, talking, photos, Neville, Carol………….. what more could I ask for? The resulting photos will be published once we get back. I’m really looking forward to the experience, whilst I’ve been taking photos since I was in my early teens, I’ve never really had a lesson. 

Earlier this week I was chatting to a friend on Facebook about Badminton, and the possibility of making a comeback on the court. Back in the day, and I’m going back 40+ years ago here, I was a fairly decent player. I played County and South East England at a representative level. My parents drove me all over the country at weekends for tournaments and County matches. I made a lot of good friends over the years of playing. Two friends stick out, two friends I’ve lost contact with over the years and would love to speak to again.

The first of those friends was Robert Day. I first met Rob at the U13s Berkshire Restricted Tournament, he was an U13, I was an U12. I beat him J Ok, he’d just recovered from a broken hand, but I still won, about the only time I ever did beat him at singles. The next year we came across each other at various tournaments and matches and struck up a close friendship which would last through the next 15 years or so. He introduced me to parties, the Red Lion in Wokingham, smoking (I'll forgive him, I should have had more will power!), the B52s and photography. We made a formidable doubles partnership, based on grovelling our way out of matches with superb defence that would wear the opposition down, ok, we bored the pants off them, but it worked. Rob and I had our ups and downs, he once pinched a girlfriend of mine and married her, I eventually forgave him, it was a lucky escape on my part. When he and the said stolen girlfriend emigrated to the US of A Carol & I took on their two cats, Tiffiny and Tucker. The marriage didn’t last (Not Carol and I, we’re still together), but Rob came back to the UK on  a fairly regular basis, when we’d meet up for a pint and a chinwag. The last time we saw each other was about 10 years ago when he was over with his new wife. We played an hour of badminton, I won, that was the last time I played, and I haven’t seen Rob since. The last I knew Rob was working in IT in San Diago.

The second of those friends was Jane Willoughby. We first met whilst playing for Reading Youth BC as the age of 13. Jane went to Maiden Erlegh School, was an all-round sportswomen, drank pints, and lit her fags by using the biggest box of matches known to man. We struck up a great friendship, stretched at times by me being a prick, and we were a feared mixed double pairing in the Reading leagues. Jane was very bright, passed her A Levels and went on to get a great degree from Loughborough University before embarking on a career as a Primary School teacher. She married Anthony Wilkes a number of years ago, and again, for one reason or another we lost contact. I would dearly love to get back into contact with both Jane and Rob. Searching FB, Twitter and Linkedin have thrown up no results, maybe the power of Social Media and random blog posts will prove to be more successful.

For a sport that meant so much to me when I was growing up, I just gave up overnight. I’d been playing a match about half way through the season, got home quite late in the evening, my knees were killing me, I hadn't enjoyed it, and I never picked up a racket in anger again. Both Anna and Max went on to represent Berkshire at Junior level so perhaps sport does run in the genes.

(I suspect I'll be told off for posting this pic of Anna when she was probably about 13)

To keep with the throwback to the old days theme of this blog on 22^nd February Carol and I are off to the Hammy Odeon, ok, it's now known as the Hammersmith Apollo, but will always be the Hammy Odeon to me, to see Blue Oyster Cult, a band that Rob introduced me to back in probably 1978 / 79. They’ll be best known to most people by their only UK hit, Don't Fear the Reaper The last time Carol and I saw BOC live was 24 years ago when Carol was very heavily pregnant with Anna. We travelled up to the Marquee in London, an iconic venue and the stewards found us a quiet area to watch the performance from, I think they were worried she’s go into labour during the encore. I’m slightly apprehensive about the gig, the two original members of the band must be pushing 70 years old now, but I guess good music never dies. in our numerous trips to the Odeon in years gone by it always seemed that the same support band were playing, three pints on London Pride were their name :) 

I haven’t yet had a date to see the Plastic Surgeon for the next cancer op. but I see that as a good thing as it can’t be that serious. I have had a couple of massages on my neck as the lympth nodes are a bit swollen on the right underside of my chin, as is one of the muscles effected by the surgery, so it’s likely I’ll be seeing the massage team for a while longer yet. I'm beginning to feel defined as a person by the cancer. A few years ago at a schools rugby festival I met one of my old school masters who I hadn't seen for probably 30 years. He looked at me and said, "I can't remember your name, but you were the badminton player weren't you?", that's how I was defined as a kid. Then it was probably as the bloke who was the easiest in the world to persuade to go for a pint after work. Now it's as the chap with a hole in his throat. Oh well, better than the other option I guess. 

That’s about it for this update. I really hope that next time I write I’ll be able to say that Rams have been promoted to National 1. They currently stand 12 points clear at the top of the league with eight games to go. 

As always, thanks for reading.

To be continued………………

#Shoulder2Shoulder

Neville in his "Happy Place"  - Porthcothan Beach

Third Time Lucky

I felt a certain amount of Déjà vu regarding whilst writing this post.

Going back to December 2015, when I eventually built up the courage to go and see my GP regarding my inability to talk louder than a church mouse, I encouraged anyone who’d had a long term concern to put on their big boys pants and get themselves to their GP. I’ve had a small patch of dry skin on the inside of my knee for a year or so, and more recently a patch of skin above my cheek that was scabbed and dry for at least 4 months. As usual I ignored them. Eventually I’d had enough of waking to a bloody pillow case each morning and made an appointment to see my GP. I was lucky to get an appointment 90 minutes after my phone call, and didn’t have to go through any hoops with the Receptionist as to why I needed an appointment.

The Dr. examined both patches of skin (luckily I was wearing clean underpants) and decided that with my history of being really bad at getting better, he’d better refer me up the line. Hello “14 Day Pathway”, it’s been a while. If you’re referred as a potential cancer risk you should be seen within 14 days of the referral, hence the 14 Day Pathway. I was contacted by Royal Berkshire Hospital less than 24 working hours of my initial GP’s appointment and given a hospital appointment six days from the referral. Outstanding performance from our much maligned NHS.

I rocked up at the Dermatology Dept. 10 minutes early for my appointment. The sign on the wall said “Clinic Delays”, it was boiling hot and packed. Welcome back to the NHS I know and love. Eventually I was called in, it was actually 5 minutes before my appointment was due, but I’m trying to build up the tension here a bit.

The Dr. asked me to go into a cubicle, remove my shirt and drop my trousers. Who am I to refuse such a polite request? He proceeded to then examine my upper body and back with some sort of magic scope thingy, before taking a closer look at my knee and my cheek. The upshot is that my body is in good condition for my age (I think he was talking about skin type rather than muscle mass!). The area around my knee could be treated by being frozen, but the patch of skin on my cheek will need surgery as it is a Basal cell carcinoma, ie Skin Cancer L “not again” was the first thought that went through my head. The extremely good news is that BCC is the most common form of cancer, easily treatable, rarely spreads or returns and has nothing whatsoever to do with my previous two versions. This has most likely been caused by exposure to the sun over the years. I’ve been referred to a Plastic Surgeon for a consultation on how to proceed, but it’s likely that a small op, done under a local anaesthetic will be offered. As it’s a Plastic Surgeon I’m going to ask if he could possible straighten my nose out whilst he’s there. Hopefully this will all be done in the next couple of months. Whilst I was still in the “Trousers Down” position he went on to “freeze” the patch on my knee, blimey it was still stinging 24 hours later, but it should fall off in the next couple of weeks. I presume he means the patch of skin will fall off and not my leg.

So, to reiterate, if you’ve got something wrong with you, and it’s hanging around, GO AND SEE YOUR DR, do not pass Go and do not collect £200.

Finally for this brief update, watch this short video of Rams scoring the winning try in the last minute of their match last week against local rivals Henley RFC. It should take your mind away from me sitting sans trousers in a cubicle. The match was one of those “I was there” moments J - The Battle of the Thames

As always, thanks for reading.

To be continued…………….

#Shoulder2Shoulder

The Fairy Tale of being a Lary

I could have been someone............ 

(click on the link) 

Three years ago this evening, Christmas Eve 2015. Carol and I had left the Royal Berkshire Hospital after meeting Dr. Fairbairn (Scary) and CNS Jo for the first of many times. We’d been given the news that we’d suspected for a week or so, I had Stage 2 Cancer of the throat, however, to quote Dr. Fairbairn, “We think you’re worth saving”. Going back home and sitting the kids down to break the news was one of the hardest things I’ve ever done. “Sit down kids, we’ve something to tell you, Dad’s got cancer, Ho, Ho, Ho”.

After the annual reading of "A Night Before Christmas" it was back to normal. And thus began the changing of my life for ever. RT, Chemo, remission, the bastard coming back, laryngectomy, ho di hum.............. 

I was looking through some of the old blog posts and picked out key words and phrases that seemed to crop up and was originally going to base this post around those phrases, but after writing a thousand or so words it was the most boring update of all the ones I’ve done, and there have been some insomnia busting blogs over the last three years.

Instead I thought I’d just remind myself how lucky I am to still be around and annoying anyone who reads this! The NHS never once gave up on me. The treatment I’ve received since I underwent the Laryngectomy has been brilliant, especially from an extremely stretched Speech and Language Team. One day we’ll find the valve that lasts longer than 12 weeks J . 

I was chatting to one of the Physio’s at Rams last week and she asked about the problems I’m having with leaking valves and the fact they need to be replaced so often. I explained that one of the problems is that there are only about 7,500 “Larys” in the UK, so it makes new investment in Research  and Development very expensive. Head and Neck Cancer isn’t sexy and that is not to deride any of the more common cancers that get massive funding. Of course something like breast cancer should get better funding than head and neck, there are far, far, far more patients who’ll benefit from the R and D and will ultimately survive. I know in the USA there’s been experiments with transplanting voice boxes, to prevent the need for a Lary, but from what I’ve read we’re a fair few years away from that process being a realistic option.  

I’m now on quarterly reviews from the Consultants, they’re more than happy with the way I’m progressing. I’m not, but that’s just me being picky I think. The original suppliers of all my “Lary” kit, Countrywide Supplies, let themselves down with appalling customer service in October of this year, they then compounded their errors, making me think that they were trying to wind me up. I actually got quite upset with the way I’d been treated, but a change of supplier seems to have solved the problem. I mentioned the problems I was having with Countrywide to the other member of the “Lary Club” and was surprised to be slapped down somewhat by a senior member about the way I’d emailed Countrywide. I decided at that point that there’s little point in me attending anymore meetings with the group. They mean well, but sitting around a table once a month and just chatting is maybe ok if you’re retired, but I still work. I know I can email a couple of the members if I’ve any real concerns. I am worried about the impact of the dog’s dinner known as Brexit as my supplier is an EU based company. I’ve been slightly over ordering for a couple of months now so that I’ve got a back stop of supplies should the worst happen.

Slowly I’m coming to terms with being a “Lary”. Cold weather and rain make it difficult for me to function properly. Warm weather is good, so long as I don’t get sand in my hole (Oh er missus!). This is my second winter as a Lary and I recall Mister Rourke, one of my Consultants, telling me last year that it takes a number of years to really come to terms with the change in my body. Social events are tough these days. With no real volume control I find it difficult to communicate if there’s a lot of background noise. I’m dipping out of invites at the moment if I think it’s likely to be noisy. I’m tending to leave Old Bath Road as soon as the matches finish this year, rather than going up to the bar afterwards for the post-match celebrations. I’m learning that I can take just as much, if not more pleasure, by taking some photos at a match, chatting to people on the side lines and then going home to spend a couple of hours editing the shots. I don’t need to be the life and arsehole of the party anymore.

On the subject of rugby Rams are currently 11 points clear at the top of the league and playing some of the best rugby I’ve ever seen at the ground in the 14 or so seasons I’ve been following the 1^st XV. We’re now a very professional outfit both on and off the pitch. The 18 players wouldn’t be able to perform without the hard work, week in, week out, of the backroom staff. Anyone who’s read any of my blogs over the last three years will know how much Rams means to all of the Clark family. It really is a #Ramily.

Tonight is Christmas Eve, three years on. The tasty and simple lasagne has been made. The Beef Wellington is prepared and ready for the oven tomorrow. There’s five of us at home again this year for dinner. Carol, Anna, Max, Tom and I, plus of course Neville and Penny who no doubt will be looking to hoover up any scraps.

I’m getting there, I’m still alive.

Merry Christmas and a Happy New Year to one and all. Especially those people I know who are still going through the horrible cancer wringer at this time. May 2019 bring loads of happy times, and walks on the beach with sand in your toes.

As always, thanks for reading.

To be continued……………

#Shoulder2Shoulder

Charles, the cowardly b*****d. 

It’s been a few postings since I’ve allowed someone else to write the blog. After the success of the edition written by Penny and Neville I thought it was about time someone else had a go, to give a different perspective to the writing. So without further ado, let me introduce you to Charles. Charles isn’t his real name, but he’s a coward and doesn’t want to be recognised. I first met Charles in December 2015, but he’d known me for a few months before that. Over to you Charles.

Well, hello there folks, my name is Charles and despite what Paul mentioned above I’m not a coward, I’m just a sneaky so ‘n so who doesn’t like to be seen in public. I prefer to hide in my victims, opp’s I meant hosts. Paul didn’t become aware that I was around until late summer 2015, but I’d been hanging about for a few months before that. If he’d been sensible he’d have gone to see his Dr. straight away, but like most men he just ignored it. That meant I had a much better chance to hang about and annoy him for even longer. We played a bit of footsy for a few months, I thought that he’d started to like me, get used to me. Then he saw a bloody quack who sent him to see someone with a few more brain cells than Paul. The smart arses thought they’d got me with their magic potions of chemicals and electrical zapping………… they were wrong. I’m much too clever for that sort of black magic, I just hid behind the bones, had a rather pleasant summer and decided to come back to haunt him again…………. With a vengeance and a rather quirky smile.

No chance of any fancy use of magic this time, if they wanted shot of me they were going to have to use good an old fashioned iron monger. And they did………… 12 hours of digging, scraping, cutting, filleting and reshaping and I was discarded in a bin with no second thought of my future. How rude!

I may have been exorcised from Paul, but I’m still around, ready to strike again without any notice. You people think that you’re safe, but you’re not! Your Doctors are clever and getting better, but I’m the worst nightmare and will strike you down even if you’ve been a good person all your life, which let’s face it, is a pretty rare thing. Remember, I can see what you’re up to.

Anyway, let me tell you about the future. I’m going to…..

At this point I managed to get control back on my blog. “Charlie” has been told he’s no longer welcome around here. He was never welcome, but sometimes you can deny the uninvited guest. He’s on borrowed time.

As always, thanks for reading.

To be continued…………….

#Shoulder2Shoulder

The Coward of the County (And other insults to throw at Cancer)

Long term readers of this blog will no doubt remember Lisa Magill, AKA “Terminally Fabulous”. Lisa wrote a superb blog about her cancer struggle which was followed by thousands of people all over the world. Lisa died in March 2017. She was the first cancer sufferer I started following after I was diagnosed, there have been a few others in the time since, but none had the impact that Lisa had. That was until I came across a blog / podcast called “You, Me and the Big C” written by Deborah James, Lauren Mahon and Rachel Bland, the podcasts brought the day to day of living with cancer into the homes of millions of listeners. They are funny, they are sad, they are truthful. You’ll laugh, cry and think if you download the podcasts, which I really encourage you to do.

Rachel is probably best known as a BBC Radio presenter and news reader. She worked closely with Richard Bacon and Tony Livesey on late night shows, before gravitating to slightly more sociable hours.

The three podcast presenters all have one thing in common, they all have cancer in one form or another.

I started to follow Rachel on Twitter back in 2017 and made a right fool of myself by getting confused as to who was Rachel Hodges and who was Rachel Bland. She straightened me out by explaining Hodges was her maiden name. What an idiot I felt. We had a few Twitter exchanges over the next 18 months or so, and Rachel made some very kind comments about my blog.

Rachel knew that her cancer was terminal. In August she started writing about her life so that her young son would have something to remember her by.

On Tuesday of this week she released a statement on social media that her time was nearly up. On Wednesday at 11am Radio 5Live announced that she’d died peacefully with her family around her that morning. Rachel was very much part of the Radio 5Live family, I’ve no idea how the presenters managed to keep it together. Tony Livesey presented the Drive Time show that afternoon, he had the listeners in tears of laughter and sadness with the stories he regaled about his time presenting with Rachel. 

Rachel didn’t talking about passing away, or being taken, she talked openly about dying. She talked about the total bastard that cancer is. She put the can into cancer.

The two remaining members of the podcast have vowed to continue to spread the word and to continue the great work they’ve been doing with Rachel.

I hadn’t planned to blog this week. Rachel died and I reckon conservatively another 3,400 people will have also died this week from cancer in the UK. They won’t have received the publicity (that’s the wrong word, but I can’t think of the right one), but they’ll all have families grieving over a loved one who’s died.

Cancer will be beaten, probably not in my life time, but it will be beaten. Cowards never prosper in the end.

As always, thanks for reading.

To be continued……………

#Shoulder2Shoulder

A day in the Life of a Lary

“Is everything back to normal now?” – The question I’m asked on almost a daily basis by folk I’m interacting with. I usually answer with something along the lines of it’s as normal as it’ll ever be. But, it got me thinking as to what my “normal” day now consists of and how much it’s changed over the 14 months since Lary’s appearance. Take Tuesday, the Tuesday after the Bank Holiday weekend. It should have been a day like any other, but due to Lary it became a tad different.

I’ve been getting very breathless of late if I’ve been doing any form of exercise or even just walking up a slight incline. I noticed last Saturday when I was walking Neville back from the park that I had to stop twice on the steep hill home to recover my breath. Then, last night at about 2am I woke with a tight chest and only really able to take short, sharp breaths in. I resolved, after a fairly sleepless few hours that it was about time I called the Dr’s. So at 8am, after doing an hours worth of work related emails I called the number, got through straight away and had an appointment for 9am the same day. Crisis, what crisis? J The Dr. I saw was very thorough in her examination, blood pressure, temperature, heart rate, pulse and then the cold stethoscope to my chest and back. The only slight problem was when she asked me to take deep breaths through my mouth, oh how I wish I still could. She could find no overly obvious causes of the breathlessness (Which luckily made a guest appearance during the examination) but prescribed yet another course of antibiotics and sent me off to the hospital for a chest x-ray. I was lucky in that there was no one else waiting in the Radiology Dept. when I arrived so I was in an out in 10 minutes flat. A quick drive home via the Chemists to pick up the Antibiotics (note to pharmacy assistant, I can’t speak very clearly, I’m not deaf!) and within two hours I was done and dusted, sitting back at my desk……………………..

…………….. feeling like crap! A quick call to my boss and we decided that a duvet day was probably the best course of action. I was coughing heavily, having to clear out my stoma every 10 minutes or so. Not really fit for purpose. A few hours in bed helped to settle my chest down a bit, but I still spent most of the remainder of the day coughing whilst struggling to get my breath comfortably. One of many advantages to being married to a nurse, especially one who works in Respiratory Medicine is that Carol had a quite word with the Radiology Dept. and confirmed there are no underlying signs of infection on my chest showing up on the x-ray. Good news in some ways, but it doesn’t explain why I’m struggling so much at the moment, especially if there is no infection. Carol is going to be undertaking some “home” tests on me to see if she can find out what’s up, it’s been a while since I was her patient, I wonder if she’ll wear her uniform?........ J  So a day that started off as being a normal one ended up with me feeling frustrated and pissed off with myself. An early night beckoned as I was missing sleep, sleep is good.

As Tuesday wasn’t a “Normal” day I thought I’d give you an idea as to what is:

6.30am – Carol’s alarm goes off, I try and grab another five minutes sleep as I’ve probably been tossing and turning since 4am. Eventually at 7am I drag myself out of the bed and start the “looking after Lary” process. Depending on how I’ve felt the previous day I’ll have to either change the base plate I’m wearing from the overnight soothing one to a more heavy duty beast, or perhaps I’ll have had a good day and will still be wearing the same plate. Either way the valve will need cleaning out with an implement that looks a bit like a pipe cleaner and acts in the same way. Stick it into the hole, twist it a couple of times, pull the gunk out, cough into a tissue, replace the filter and we’re ready to face the day.

7.30am - Breakfast will usually be a bowl of cereal sat at my desk in my office at the back of the house. I like to be online early in the morning so that I can deal with any emails that have come through. I’ll also look at my online diary to ensure I’m up to date with all my cases. If Max is not at home or is working early I’ll take Neville out for his early morning walk. Our preferred destination is Sulham Woods where Nev can have a good run around without being bothered about the “Oldies” who walk their dogs in a pack at the local park. He’s fine on a one to one basis with other dogs, but gets a bit spooked with packs. 

9.00am - The working day continues with customer contacts, emailing, phone calls, spreadsheet filling and copious amounts of coffee being necked. Along with nudges from Nev that he’d quite like it if I threw a ball from him in the garden. This is all of course interspersed with me clearing out my stoma, sticking the pipe cleaner up to ensure I can speak and apologising to anyone that I speak to as I sound like Darth Vader’s camp brother still.

Midday – I tend to stop for lunch and watch the TV for half an hour or so. Jacket spud with tuna and cheese. Pie from Waitrose. Cheese on toast…….. and I wonder why the heck I’m now pushing 90kg and have had to buy a new suit. My physio came out with a cracking comment the last time I saw her. “Paul, your weight is about right for your height, we just need to redistribute it to the right areas!” – oh how I laughed.

Afternoon – I’ll admit, my energy levels disappear after lunch. I’ll invariably need to have a short nap at some point in the afternoon. I was a bit worried about this initially, but having read up on the after effects of Chemo and RT it would appear that being zapped to Hell and back and poisoned with heavy duty rubbish has a lasting impact on your body. There will be many more cases of clearing out the stoma, trying to time phone calls when I’ve a vaguely strong voice and frustration until I logoff for the day.

5pm(ish) – Nev has his second walk (after tearing around the garden for as long as he want’s, or more likely sleeping peacefully in my office!). The second walk tends to be a lead walk for half an hour. We try and balance out walks between lead and free running.

Evening – I do the cooking in the house as Carol doesn’t get home much before 6.30pm. Chilli, Lasagne, Pork Belly, Streak, Salmon will be the staple diet from Monday through until Friday. May not be exciting, but it’s a pretty healthy offering. I really enjoy the couple of hours I spend in the kitchen prep’ing and cooking, probably the most relaxing part of the day. By the early evening time my chest will normally have settled down, so there will be less coughing and less clearing the stoma.

I tend to disappear upstairs for a soak in the bath between 9pm and 10pm. The key to having a soak is to not lean back too far, otherwise the bathwater disappears down my stoma. This happened for the first time in an age last week. I was in a state of panic when Carol came up to find me having coughed what looked like blood all other the place, but was in fact red wine. After my bath is when I decide how I’m going to dress for the night. Will I leave the base plate intact? Slide it off and replace it with the soothing gel one? Or maybe, if I’m feeling daring, go au natural for the night and wear just a smile? It’ll then be reading in bed whilst listening to Radio 4Extra on sleep mode, drifting off by 11pm, and then starting it all off again at 4am the next morning.

My god, what a bloody boring life I lead.

Four years ago I spent a very uncomfortable night sleeping on a concrete floor in the grounds of a private school in Reading. A local charity, Launchpad, have an annual “Big Sleep Out”

to raise funds for the homeless of Reading. One of the main men of the charity is a chap who also happens to be a member at Rams and has been a good friend for a number of years now. When he asked me if I’d take part I had no second thoughts. Through my contacts via my work I managed to raise a pretty penny, which Santander then doubled under their matched funding incentive. It was an uncomfortable night, the rain started about 2am and my home made shelter was frankly pants. It leaked, it wasn’t wind proof, but it gave me an idea how the folk who have to sleep out in all weathers and seasons must feel. Albeit we were in a safe and secure environment, unlike the folk who sleep on Friar St in Reading every night. I stoated off home around 7am, to a warm bed, a cooked breakfast and a cup of tea. This year I was pleased to receive an email from the organisers asking if I’d be free to take photos of the evening for their official fundraising page. So, come 6pm on Friday I’ll be at the school in Reading, camera at the ready, shooting the brave fundraisers as they assemble their various shelters for the evening. Listening to the inspiring speakers lined up and then going home around 10pm to my warm bed in a safe environment. If anyone has any spare cash lying around here’s the link to the fundraising page –

https://www.justgiving.com/launchpadreading 

The Launchpad photos will closely be followed by the Rams photos as the 15^th season of following rugby at Old Bath Road commences on Saturday with a home fixture against Canterbury RFC. Max was dragged shouting and screaming to the club as a 5 year old, he didn’t like it at first and it took the odd bribe of a sausage bap and can of Coke in the first few weeks. By Christmas he was hooked. Within two seasons it was him dragging me out of bed to get to rugby. This coming Saturday he’ll hopefully be playing for the Mighty Cents in a preseason friendly, probably his last match before he disappears off to Portsmouth and University. Hopefully he’ll continue to play rugby at Uni, if not I’m sure he’ll play for the Mighty Cents when he’s back. Rams will be looking to improve on their third place finish last season in National 2 South. I was down in Wales with the team a couple of weeks ago when they took on Bridgend RFC in a preseason friendly and came away with a win, not many sides do that. Luckily they weren't wearing their wrestling costumes for the match. 

The trip down to Wales was my first time on the Fun Bus for a couple of years. I was initially a bit concerned as to how I’d get on, I needn’t have been worried. No one commented when I was clearing my lungs out, no one looked when my voice was a squeak, the Ramily looked after me as I should have known they would. Saturday night in Cardiff was an interesting sight, luckily for the guilty I’d put my camera away by the time we eventually went out. The long trip back by coach on the Sunday morning was surprisingly peaceful, I guess the players had worn themselves out playing rugby the previous day, or something.

This Sunday will see the Mini’s and Junior’s returning to action at the club, there will be a lot of relieved parents to know that their offspring will be looked after and worn out between September and May. I'm looking forward to getting my weekend fixes of rugby back and I've a few ideas of how to spice up my photography of the games this season. Watch this space. 

We have finally got round to booking our late summer holiday. We’re back to the Barcelo Hotel in Gran Canaria that we visited last November. The deal offered by booking direct with the hotel and sourcing our own flights via SleazyJet was just too good to say no to. We had looked at going back to Fuerteventura, however the road to the dunes that we enjoyed cycling down has been closed until mid October, supposedly so that important ecological studies can be carried out. Strange that the closure also coincides with the filming of the new Wonder Women feature film in the dunes. The locals are up in arms about the road closure and the impact it’s having on tourism, the main staple of the island. This year our trip to GC isn’t over the same period as the Pride celebrations, I’ll still take my leather chaps with me, just in case J 

The Saturday prior to flying off to the sunshine will see us driving down to deepest, darkest Sussex for the first South East Krom-Fest. This is a gathering of, as far as I’m aware, all of Neville’s brothers and sisters from the litter he was in, plus a few stray aunties, uncles, half brothers etc. I’m not entirely sure how many Kromi’s will be there, but as there are only 50 in the country I reckon there’s a fairly good chance we’ll have a quarter of the whole UK population in one place. How long for is anyone’s guess, but it should be fun. We’re hoping that the one and only Sidney will be able to attend, but it’s a fair old drive from North Cornwall. Neville will be enjoying 5* accommodation as his luxury kennels whilst we’re away sunning himself, pretty sure he’ll make us pay for it when we get home, and we do feel slightly guilty about leaving him, but he really wouldn’t like GC, all that fine sand would get into his fur. Anyway, he can’t speak Spanish. We're hoping to make it up to Neville by taking him down to Cornwall for a long weekend now that the crowds of holiday makers will be back at their desks. 

So another unplanned update comes to an end. It ended up as a bit more of a ramble than I'd planned. At the time of publishing the blog has had just shy of 100,000 hits. I’ve no idea when the next update will be, but it certainly won’t be until we come back from Gran Canaria. This blog may sound a bit downbeat, but it isn't really, it's just the way life is, and it's much better than the other option.

As always, thanks for reading.

To be continued………….

#Shoulder2Shoulder