Friday, 3 July 2020

It’s the COVID 19 Lockdown Blues

100 Days of Lockdown


Anyone remember Brexit?

Oh how the world has changed in the 4 months since Carol and I got back from out sun soaked and gin soaked holiday in the Canaries. Arriving back to find that buying a toilet roll was worthy of a post on Social Media was a bit of a shock. Initially the impact of COVID 19 wasn’t really felt at home, but slowly we became aware that this wasn’t just a case of a bad dose of the flu. Nev and I were still going out for our two walks a day, ramping up somewhere around 13,000 steps whilst we were at it. We were dropping into Mad Hatters morning and afternoon for our coffee and ear rubs, it was Nev getting the ear rubs, I wasn’t that lucky. Then they went to takeaway only, then came the lock down. Nev couldn’t understand why we walked past the closed up shop, so we changed our afternoon walk to avoid the shop. 

Having all bar food shops closed didn’t really impact us that much either. Food was still available if you queued, the one walk a day was ok as the weather was decent and Nev could play in the garden. The combination of Chemo which shags your immunity and being a neck breather meant I needed to keep a low profile for a while. I was still taking Nev out for an hour a day as Carol was working and it wasn’t fair to keep him indoors, but we’d go out early and avoid any form of contact with other people. A bit like a normal day for me J

Who’d have thought that all this would come around just because Mrs Lau of Wuhan went to the market and thought “Hmmm, what to have for dinner tonight? Wow, that bat looks good.”

Carol has worked all the way through at the hospital, luckily after being asked to go front line her managers decided that the risk was too high so she was initially working at maintaining the CPAP machines that are vital in the treatment of Covid patients. As a highly quailed Respiratory Staff Nurse Carol’s experience is vital to the NHS in the current crisis. She’s working long hours, making sure she gets changed out of her scrubs before she comes home and is taking emails from colleagues into the evening. Way beyond the call, but exactly what you’d expect from someone with 40 years experience of the NHS. Now that things are slightly more normal she’s back doing what she knows best, treating patients with respiratory problems.

I actually think that we were in a pretty good position. We had food in the fridge, wine in the garage and we’ve still got each other to talk to. Max has been Southampton with Laura for the duration. Anna and Tom were due to come down to us for Easter, but obviously stayed in Leeds. I really felt for anyone who was living by themselves with no open space of their own. I had real moments of going “Stir Crazy” but I could always step into the garden, take in some fresh air and throw a ball in the vague hope that Nev will bring it back again. I’ve really missed the rugby club, the photography involved and the people involved too. It will be back, eventually. To take my mind off the rugby I’ve been photographing the Red Kites, flowers and food, shows how desperate I’d become J  

My biggest worry about lockdown was what would happen if my valve started to leak. Sure enough on Good Friday the first small leak started and by Easter Monday it was like a sieve. I mailed the Speech and Language team on Tuesday and was advised that my Therapist would call me on Thursday to discuss the options. By Thursday the leak was as bad as it’s ever been. I couldn’t get any fluid down without coughing heavily. I’d been given a valve plug to use for these situations and by lunchtimes I’ve had to use the plug to be able to eat and drink. The downside to the plug is that whilst it’s in place I can’t make any voice at all. My Therapist called late on Thursday evening, I’d got the plug in so Carol had to take the call. It wasn’t good news. Valve changes now need to be done by a qualified member of the ENT staff, wearing full protective gear as the process will usually involve me coughing up gunk whilst they poke around. It looked like the earliest date would have been in another two weeks from the phone call, a total of three weeks of leaking. By far the longest period since I became a Lary. The other bad news is that if the valve was to fail completely then the current advice is to remove it and let the tract heal over. That would mean no voice at all until such time as safe surgery can be carried out, sometime in the future.

Whilst the leak continued and fluid was getting into my lungs there was more of a chance of developing a chest infection along with a temperature, neither of which I wanted as that will delay the replacement of the valve even further. It was quite a difficult balancing act as I understand fully the pressures the NHS are under and perhaps the ability to talk isn’t top of the priorities list. We’re all going through a pile of pooh at the moment, hopefully once this is over, and it won’t be anytime soon, the world will be a better place.

In the end it was a further five weeks until the valve was eventually changed. Five weeks of coughing and spluttering before plugging around lunchtime and being silent for the rest of the day. That was really the lowest time of Lockdown. Whilst all this was going on I was also advised by the hospital that my scheduled follow up appointment in July was being cancelled and wouldn’t be being rescheduled. I was really shocked by this news. In effect my reviews were being pulled after only 2 ½ years of the scheduled five years. I was low due to the leaking valve and felt that I was being cast adrift by the NHS that had looked after me so well. I tweeted about the issue and was contacted by my mate Victoria Derbyshire from the BBC asking if I’d take part in a Skype interview the next day to highlight the issue of treatments being binned on the back of COVID 19. Of course I agreed as Victoria has been great with me over the times I’ve been on her show. The next day I was on BBC2 live from about 10.30am for around 10 minutes discussing what it’s like to have your voice taken away and to feel like no one cared. Victoria’s advice was to keep shouting, loudly. So I did.

 I mailed my SALT weekly with an update that I was COVID free but going down in spirals from a mental health perspective. I felt guilty as I knew it wasn’t Caroline’s fault, it was someone much higher up the paygrade who couldn’t see beyond COVID. I hate to think of how many needless deaths will have been caused by withdrawing treatment to cancer suffers. COVID 19 is truly horrible. Cancer isn’t a walk in the park.

Eventually a date was agreed on for the valve to be changed. I turned up at the hospital and was directed to a distant part of the ENT Dept. where Caroline and an unknown Dr. were waiting for me. Both fully PPE’d up with masks, air and full length rubber capes, I’m sure I’ve seen that video J The process took about 10 minutes and I was on my way, no longer Leaky McLeak Face. To add to my admiration of our NHS my CNS contacted me after Carol had emailed her to say how upset I was being binned from reviews without any consultation as to how I was feeling. She told me that it was a plan that was being discussed going forward post COVID but she wasn’t aware that letter had been sent out to patients. The long and short is that a telephone consultation was booked in for yesterday. The call went really well. We discussed my concerns as to the length of time that my last valve change had taken. I was pleased to hear that the Dept. is now more geared up to getting procedures completed in a more timely manner, however as the valve change has high risk of airborne transmission of COVID, precautions need to be taken to prevent the risk to both the SALT Team and me. We discussed my concerns over my Lymphoma which has massively increased since my appointments at Sue Ryder had to be binned. I’ve tried the massage myself, as has Carol, but not being trained in drainage means we’re only scratching the surface. There’s no real answer to this problem as Lymphoma massages are likely to be right at the bottom of the pile of treatment that will be reintroduced. Finally, we talked about the letter I’d received cancelling my future consultations. The Dr. confirmed that the letters should never have been sent out in the first instance and that it was really a knee jerk reaction to COVID. I’ve agreed to go onto what’s known as Patient Initiated Follow Up. So, if I feel I need to see a Consultant I contact my CNS and they’ll arrange and appointment. Three years in and I know my body pretty well. The yardstick is if I feel there’s a problem for more than 10 days then I should yell…………. LOUDLY! I can expect a call in the next few days about some specific issues I questioned, ‘tis Saul Goodman.

Is It Contagious?

On the subject of cancer treatments and the effect COVID has had on them, for a while now I’ve been following the progress of Oscar on the Is it Contagious FB page. Oscar is a teenager who was diagnosed with cancer when he was 10 years old. The first thing he asked his consultant when he was given the news was “Is it contagious?” In the past five years Oscar has undergone many treatments, including various doses of Chemo which have taken away his hair, but not his smile. His latest Chemo took place during lockdown which was difficult for Oscar and his loving family. Whilst the Chemo had the effect of slowing down “Beastie” as he calls his cancer, it didn’t take it away. The only option left was very invasive surgery which Oscar underwent on 23rd June. It’s still very early days, but the news coming out of the hospital daily is for far more upsides against the odd downside. All to be expected for the surgery performed. Before being diagnosed Oscar was a member at Chipping Norton RFC and his whole family are big fans of the game. Rams RFC kindly sent Oscar a hoodie to wear, apparently the surgeons had to remove the hoodie as well as “Beastie” as it’s hardly been off his back. I hope that when Oscar is well enough, and rugby returns that we can welcome him and his family to OBR for lunch and one of the 1st XV Matches #Ramily.

I was thinking today of all the words and phrases that are now in everyday use, that weren’t in March :

·         Lockdown (Usually used in the hope of the pub staying open)

·         Key Worker (Hmmm)

·         Face Masks (Usually used by bank robbers or swingers!)

·         One way systems (You’ve got to hope that a lot of the people in shops don’t have driving licenses)

·         Daily Briefing (Gave up after a week or so as the Journalists were too interested in scoring points)

·         Social Distancing. (Similar to One Way Systems in that a lot of people don’t understand what it means)

·         COVID Hair Style (Invested in clippers, No.1 all over)

·         Air Bridges (Nope, not a clue)

·         R Rate (A friend of R Kelly perhaps?)

·         Prof Chris Whitty (A true hero!)

·         Clapping for Carers (Did the job)

·         Zoom (I thought this was 1980s song by Fat Larry’s band – no relation to Leaking Larys Band)

·         New Normal (I wasn’t sure what the old one was)

·         Second Spike (Henderson or Chandler?)


On the subject of Zoom, I’d never heard of it prior to Lock Down, but it became a staple of the weekly diet for a while. It was a great way of keeping in contact with the kids whilst we weren’t able to travel. I also used it for weekly chats with guys from the rugby club that I’ve known for a while. An hour or so of chit chat would break up to week. I was often in a position where I had no idea what day of the week it was, let alone what month! Tuesday Zoom calls were a godsend. I even took part in a couple of Zoom’s whilst I had no voice, going through a pack of Post It notes both times J

Slowly but surely the lock down is easing, I’ve managed to have a few socially distanced walks along the banks of the Thames with Jools, Annie and Shaun, not forgetting Remy and Monty who kept Nev company. Also a pleasant ramble in the woods with Mr Cook and two bottles of Doombar! Friends have come round for Socially Distanced drinks and nibbles in the garden and we’ve returned the favour. Max has been home a couple of times for Socially Distanced lunches in the garden.

We’ve been lucky that the weather has been pretty decent. I don’t think I’ve worn long trousers since the beginning of April J

Business’s and shops are beginning to open up. Mad Hatters now opens from 8.30am to 2pm six days a week. It’s still takeaway only, but it’s lovely to wander in most mornings with Nev and to get our coffee whilst having a chat. Places like The Caversham Butchers have been open for the duration, supplying superb meat, pastries and pies, delivering where necessary. Anna sent me a pack from the butchers for Fathers Day, darn it was good!

Nino’s has continued to supply fresh goods to whoever needs them and has fortified us with Pizza’s a couple of evenings when I didn’t fancy cooking. It’s important that we remember our local traders when things return to the new normal. Waitrose, Sainsbury’s, Tesco’s etc are great and will always be needed, but it’s good to support the little man where possible. I’ve made a couple of visits to the supermarkets of late, but only to buy a few bits and pieces for whatever it is I’m cooking that night. I’ve been shocked by the total disregard for the one way system from a lot of people. I was verbally abused by a young girl in Tesco’s this week when I pointed out she was going the wrong way down an aisle. It did make me laugh when she took off her mask to use some choice Anglo Saxon phrases at me and berated me for not wearing a mask. I was going to explain about being a neck breather, but there didn’t seem a lot of point if she struggled with arrows. 


At the time of publishing we’re a day away from the latest lifting of the Lock Down. As of Saturday Bars, Pubs, Restaurants and other establishments can open up with strict guidelines to follow. Hotels and holiday lets can reopen, again under strict guidelines. Following the scenes from some beaches over the lockdown period when the weather has been good I’m quite pleased that the forecast isn’t great for this weekend. A slow return to the new normal would be better I think than a headlong rush into 10 pints and a curry. I’m in no rush to get back to a pub, but am really missing restaurants, especially Nino’s. I hope that the predicted “Second Spike” isn’t as vicious as the newspapers are speculating it'll be, however with the English population’s ability to be total and utter selfish twats I’m not too hopeful. The economy is going to take a real battering for many years to come to pay for the effects of COVID. I’m close to the end of my working life, but I feel so sorry for the kids who’ll be paying probably for the rest of their lives. On the subject of jobs, I was originally planning on looking for some sort of employment again once we’d got back from the Canaries, COVID put paid to that whilst I was having to be careful. I’m still classed as at risk purely down to the Chemo and RT, but I need to find something to bring in a few quid and to alleviate the boredom that can arrive. Carol leaves for work at around 7.30am and is rarely home before 6pm. That’s a long time to be by yourself. I really think I’d have gone totally nuts if it hadn’t been for Neville and his company, even Penny has started to be a bit more sociable.

This Saturday we’ll be going up to OBR for a Socially Distanced pint and to see loads of friends who’ve we’ve missed so much since February. I’ve had to set the postcode into the Sat Nav as it’s so long since I’ve been there, probably the longest break in 17 years. Then on Sunday we’re driving up to Cambridge to Carol sisters (Evil Twin from those who remember the early blogs), Anna is driving down from Leeds to meet half way. Nev is very likely to wet himself in delight at seeing Helen, Stuart and Anna again J Tom is staying up in God Own County as he’s got work over the weekend, a sign perhaps of more normality as he works in advertising.

Way before we’d heard of COVID I’d promised the kids that we’d all go down to Cornwall together at some point this year. I really didn’t think it would happen, but with the lifting of Lock Down I’ve managed to book a six berth caravan in St Merryn for the first week of September. We’re probably not going to go into Padstow as the streets are so narrow, but we will walk on the beaches, we will walk along the cliffs, we will have the odd pub meal and we’re booked into Rick’s for lunch, hopefully with a medium sized dog with us too. The only thing we’ll take away will be memories, the only this we’ll leave behind will be foot prints. The people of Cornwall are rightly nervous about the return of tourists, we can only hope that by September the tourists will have remembered how to be tourists. Please let the weather be decent, as six of us and a medium sized dog stuck in the caravan could be interesting if it chucks it down sideways. I’ve spoken to Kate who does the guided photography walks and we’ll meet up at some point that week for me to gain some more insight into landscape photography.

As always, thanks for reading.

(Probably) to be continued………


Friday, 20 March 2020

Welcome to the Mad Hatters Tea Party

“Wouldn’t it be great, if just for one moment, everything was alright!” – Tom Petty, Mystic Eyes

I know I’d said that the Blog was over. However I didn’t know at the time that the World would be facing extraordinary times. Let me start by saying, as this is a blog that started about my fun ‘n games with cancer that it isn’t back. I haven’t got a raging temperature, cough or aching bones. I’ve got a sore throat, but that’s been a given since June 2017.

Carol and I had booked a holiday to the Barcelo Hotel in Corralejo, Fuerteventura where we’d stayed four times before and flew out on 6th March when everything was alright………… unless you count having to change planes, luckily not mid-flight, and then wait for a new crew to arrive. At this point whilst the news about Coronavirus was on the radar, it wasn’t overly worrying. We had a cracking 10 days without really keeping up with the news from the UK until the last couple of days. The Supermarkets were fully stocked, we saw no signs of panic buying, the sun was shining, the wine was flowing, the hot tub was hot.

It was on our final Saturday that we heard that flights from Jet2 were being turned around mid-flight, and that the Island was likely to be going onto lockdown. That night there was a strange atmosphere in the town. The restaurant we were in was packed, mainly with local Spanish people who were out for a last hurrah, but the rest of the town was pretty deserted. We retreated back to the hotel and the comfort of the hot tub and bottle of Spanish brandy fairly early.

The next day we traveled for our scheduled flight back to the UK which departed an hour late due to a lack of Air Traffic Controllers, but we got home ok.
It was when sitting in the comfort of my own home that the reality of a lockdown really hit me. Whilst we’d been away we’d frequented the same bars and restaurants as previous years, with one notable and welcomed exception. These people probably don’t have deep pockets and a close down of business will no doubt have a major impact on them. Here are the guys that we visited and we’re worried about. 

Obviously the whole of the resort will be impacted and we can but hope that when things turn around, and they will, there will still be holiday resorts around the world and in the UK to visit. I follow a number of Cornish pages on Facebook, the locals there are urging holiday makers to stay away for the time being as the infrastructure just couldn't cope with a mass outbreak, I truly hope folk heed this request. Holiday's will happen again, lets just get through this crap first. 

Tapas Oscars

We’ve been going to Oscars Tapas for the last few visits to the Island. The food is authentic Spanish, from tapas to suckling pig and goat. Often we were the only non-local Spanish people in the restaurant. The staff were great, one advantage of being a Lary is that you’re usually recognised quite quickly. The young lady in the photo served us each time we visited, by the second time she was reaching for the bottle of Rioja as we were looking at the menu, and not giving us the pudding menu and just delivering us the milk rice infused with orange, she’d then share a honey rum with us before we made our merry way home to the hot tub and brandy. 

Alegria Cocktail Bar

We’d used the cocktail bar once the last time we’d been, however this year it was our place of choice each evening before deciding where to go for dinner. Now, I’m a big fan of the TV series Mad Men. One of the main characters was Don Draper who drank something called “Old Fashioned” so when I saw it on the menu I thought I’d give it a go, blimey it was good. Here’s the recipe –

·         50ml bourbon or rye whiskey
·         ice
·         5ml 2:1 sugar syrup
·         2 dashes Angostura bitters
·         orange
 or lemon zest to garnish (lemon for rye whiskey, orange for bourbon)

The service was never rushed in the bar (or even quick), but it was attentive and small plates of tapas were brought out to enjoy whilst waiting for the drinks to arrive. It’s a lovely bar to “people watch” from. What really stood out for both of us was the different attire folk were wearing. The holiday makers were generally in shorts and T-Shirts, the local in puffa jackets and scarves!
By the final night of our holiday, when the news of closure had broken the barman was taking no risks whilst shaking 

Dehesa de Salamanca (No relation to Hector)

Now for the newly discovered place for us, that was a real hidden gem. Situated on the corner between Oscars and Alegria was a restaurant that neither Carol nor I could remember seeing before. It was almost like a Mr Ben moment where a building appeared where one had never existed before J A lot of the restaurants employ people outside to try and get customers in. Instead of the usual “Hi Guys, table for two? Best steak on the Island” we heard a “Hello, would you like to try some of our cheese and salami? If you like it perhaps you’ll come back one night.” To my dismay I can’t remember the name of the chap, he was Greek and the name had for more letters in it that a normal Anglo Saxon can handle. We stopped, had some cheese which was delicious and said we’d be back the next night (Wednesday). Dimitri (Not his name) explained that Wednesday was the night they were closed, but he’d love to see us on Thursday. This non pushy sales pitch persuaded us to change our minds and take a table for two that night. Earlier in the holiday I’d had perhaps the worst meal out for a number of years. Pork ribs which were so tough they were inedible. I was slightly dismayed to see that Dehesa de Salamanca specialised in pork dishes. However my fears were unfounded. I ordered pork cheeks on the promise that they’d be tender…………… melt in the mouth would have been a better description, one of the best meals I’ve had in five visits to Corralejo.

We returned three more times and each time the food and service were top notch. There was no pudding menu, they made fresh each day what they felt like. Perhaps slightly more expensive than some of the other restaurants, but worth every Euro.

Barcelo Corralejo Bay Hotel

The forth time we’ve stayed at Barcelo, the seventh time at the group. It’s a lovely hotel. Adults only so it’s quiet and pretty sophisticated, unlike me I guess, but they let me in anyway. From check in, with a glass of bubbly, to the cava and fruit delivered to our room, to Fredico the barman who remember our drinks after one night and was almost in tears on our last night, to the Receptionist who wished us a safe flight home despite being clearly concerned for her own future.

The Beer Shack

When we arrived we hired bikes for the week. The intention was to cycle into the sand dunes to get some vitamin Sea each day, then cycle back for a leisurely lunch. Carol would then go to the hotel spa whilst I cycled a bit further in the afternoon.

Most days (Ok, every day) I stopped at a beer hut which was situated on the harbour, about half way on my ride. The hut was run by a lady who was called Africa (I think) she vaguely recognised me from previous visits, and by the third day she was pouring my beer as I was dismounting. Her English wasn’t great, and my Spanish is fairly limited however we managed to have a good chat whilst I was downing my beer. One day she was coughing quite heavily, she said “Too much smoking” I pointed at my stoma and said “Si, too much smoking” By the forth day she was pouring two honey rums for us to down as I left. The wheels got a bit more wobbly for the rest of my ride. Africa has lived a life. She looks after and feeds to the local stray cats, she’s obviously a friend of the local fishermen too who frequented her shack to have a drink, an argument and a back slap. I hope she and the other friends we made will still be there when we go back, and we will go back. 

Those were the people we interacted with and made friends with. Those, and many more, are the people who’ll probably now be living hand to mouth until this pandemic is resolved. There are people all around the world in the same position, it’s horrible what we’re going through at the moment. As soon as things get back to normal, whatever that may mean, we’ll be trying to go back to Corralejo, Padstow and Porthcothan to support the people who make our holidays so special.

Now for the final “Retail” thank you to more local businesses . Probably six or seven times a week Nev and I will pop into Mad Hatters in Tilehurst village. They serve great coffee and act as a community hub for a lot of people in the area. I see the same people in the cafe each time I visit. The welcome is always warm and friendly, they know my preference and Nev enjoys the ear rubs and dog biscuits. Due to the ongoing bollox they’ve taken the decision to only offer takeaway service, but the welcome is still the same, warm and friendly. The younger staff are dancing to the music being played, and Arron (?) came out with the most millennial statement of all time by saying he doesn't know how to use a clock. Regular readers will know we frequent Nino’s in Pangbourne whenever we can, again he’s decided that takeaway is the only way forward, but he’s going above and beyond. Nino’s has offered to do local deliveries, not just of his wonderful food, but also of staples for those who are having to Self Isolate. The community is pulling together………………. For now.

As of Monday Carol will be back working on the hospital wards for the first time in probably 25 years. As a highly experienced Respiratory Nurse it’s likely she’ll be thrown straight into the high risk areas and will be exposed to the virus. Due to Chemo and being a neck breather I’m classed as high risk so it could well be we don’t see that much of each other for a while. Luckily we’ve two bathrooms and spare bedrooms, unless the kids decide to visit. I’m self isolating as much as I can at the moment. I’m avoiding people when out walking with Nev, I’m at least two metres away from the guys in Mad Hatters when they serve me. I’ve never been the most social person anyway, but I’d imagine after a couple of weeks I’ll be climbing the walls, especially as there is no sport to photograph.

I know of three people who’ve probably had a dose of the virus, they’ve been sensible and stayed at home. If I start to show symptoms then I’ll do the same. Anyone who treats this like a case of flu needs their heads testing as they’re being so irresponsible.

Be nice to everyone. Especially your nurse, the person who serves you in the supermarket, the person who delivers your Amazon parcel, your postman, the local shopkeepers who are keeping the wheels turning.
As always, thanks for reading.

Stay safe.
Don't panic buy. 
Look after your loved ones. 
It's OK to be scared. 


Tuesday, 24 December 2019

Sunsets on Empire…….. Is this really the end?

It’s Christmas Eve, the lasagne is prepared for the oven, it’s a Clark Family tradition for 24th December. The kids are back from their far flung places. Most of the food for tomorrow is ready to go. The rib of beef should feed five adults and a medium sized dog. The wine is flowing.

It was four years ago today that we were told the news that perhaps we’d both expected following the previous two weeks of investigations. I had T2 throat cancer and would need Radiotherapy and Chemotherapy. Later that evening, after reading A Night Before Christmas, another Clark Family tradition for 24th December, we sat Anna and Max down and broke the news to them, “Ho, Ho, Ho, Happy Christmas, Dads got cancer…… “

The next four years are fairly well documented in previous blog posts. RT, Chemo, remission, “it’s back”, a laryngectomy, recovery, work, rest, play, redundancy.

There had been a bit of a scare of late. My throat was, and still is, pretty sore, so the NHS got into gear and sorted out an MRI scan in short notice. Older readers will know I hate MRI’s, but this one passed without drama, at one point I actually dropped off to sleep. 

My appointment to get the results was on 19th December, the last clinic before Christmas, the same clinic as 2015. The clinic was packed as you’d expect. I looked around and as per usual I was one of the youngest there. I didn’t recognise any of the other people, but I recognised where they were in treatment. A man of about my age was called in to see the consultant, along with his wife. 30 minutes or so later they emerged in tears holding each other closely, to be taken to the private room by one of the Cancer Nurse Specialists (CNS), I remembered vividly what it was like for Carol and I to go through the same scenario four years ago. I felt so sad for them. 

The clinic was running about 90 minutes behind. I’d taken in my Kindle so wasn’t too worried about the delay. There was a lady sitting opposite me who’d arrived about 20 minutes after I did. She looked like death warmed up. She was obviously going through the RT and Chemo routine, and was struggling. I remember how I felt when I was doing the same, when I dropped down to 68kg’s, when like her I was sipping on the energy drinks to try and get calories into my body. She was getting distressed by having to wait to see the consultant, whilst I was sat there thinking that the traffic would be pants by the time I got out. It reminded me a bit of “Sports Direct Mum” from one of my original blogs, me being judgemental for no other reason that I can be a bit of a cock at times. I got the hint that I was in the clear when both Amy (CNS) and Caroline (SALT) saw me and smiled. Eventually I was called in. MRI Scan is negative. Cancer isn’t back, “See you in 6 months Mr Clark, have a great Christmas!”

I have now run out of words. 

A brief resume in pictures of four years living with cancer.

The Family, taken before the diagnosis.

Chemo started in January 2016.

Radiotherapy, much harder than I envisaged.

A badly scared neck following RT.

My mask. Photo taken the day I finished treatment. The following two weeks were really tough.

It was back, and the only option was invasive surgery.

The little “Lary” tube that kept my hole clear in the early days.

Celebrating my escape from Churchill with a glass of wine in the garden.

Life goes on. Neville and I enjoying an afternoon at Old Bath Road.

Carol and I enjoying a break on the island of Fuerteventura.

177,500 words, over 115,000 views. Time to call it a day. Thank you to everyone, far and wide, who’s commented on this blog over the years, or who’ve offered support to us as a family. It has been invaluable.

As always, thanks for reading.

Have a great Christmas with the ones you love.


Monday, 30 September 2019

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 17th 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, 1st 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 2nd 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 1st 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…………….


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