#DoingItForDani

This will be a fairly short update this week and the focus will largely be on someone who needs support far more than I do, but before we get to that I’ll give you a brief update on my week……..

………. It’s been pants.

For some reason I’ve been feeling rough as the proverbial badger with little or no energy. Here's a pic of a rough badger - 

My coughing has been really bad when I’m lying down which has made sleeping difficult, which creates the vicious circle of lack of energy, and so on. My stomach has also been having a bit of fun and games this week, possibly down to the excessive amount of air that is now getting in. Quite glad my sense of smell is still shot to pieces. I’ve got one advantage though, and that’s that I know where I am in my recovery. Unless the bastard C comes for another play with me then it’s likely that I’ll slowly but surely start to recover, get my energy back, get back to “Normal”, learn to cope with the inability to speak properly. My future is pretty well mapped out. Others aren’t so lucky.

On Sunday 8^th October I was at Old Bath Road, home of Redingensians Rams Rugby Club. Now me being at the rugby club on a Sunday isn’t anything out of the norm, I’ve probably spent 90% of my Sundays there in the season since Max was 6 years old. What was different about this Sunday was that the Sirens, the latest team to represent Rams, were about to make their home League debut against local rival Bracknell Ladies RFC. This was a massive day for the club, the players, the coaches and all who came up to OBR to support the ladies. The game itself was a tight affair all the way through. Sirens had the superior skill set, Bracknell were more physical. With about 10 minutes to go Sirens scored the first of two concerted tries to lead 14-0 with about 5 minutes to go. Then, with an innocuous looking ruck formed about 10 metres out from the Bracknell line, the world changed for one of the Sirens players. Dani Watts was playing flanker for Sirens and had, typically for her, got herself over the ball in the ruck looking to protect it and set up another attacking position. I’m not going to go into the details of what happened next other than to say Dani was left on the floor unable to move, or feel her legs. It was obvious from the look on the players faces that the injury was serious. The paramedics and ambulance arrived quickly, but Dani was still lying on the pitch over 90 minutes following the injury taking place. Dani was eventually moved to John Radcliffe Hospital in Oxford where it was soon discovered she’d fractured and dislocated her spine causing spinal cord damage and paralysis from the waist down. Dani is still at John Radcliffe whilst she waits to be transferred to Stoke Mandeville Hospital where the specialist care can be provided to assist in Dani’s long term recovery. Dani is 28, a personal fitness trainer and has two young children.

Until she started training and playing with the Sirens Dani hadn’t had much to do with rugby, she was more of a footballer. However she threw herself fully into her new sport and quickly became one of the “Go to” players for the team, her natural strength and fitness easily transferred from one ball game to another.

Since her injury she has been totally overwhelmed by the love and support she’s received from the rugby world. The RFU Injured Players Foundation have been in close contact with Dani. She’s had messages of support far and wide from clubs, and players, including World Cup Winner Will Greenwood, she soon came to realise that once you’ve joined the rugby family it’s bloody difficult to leave it. Dani posts daily updates on her progress on her Instagram account https://www.instagram.com/dani.25.10/ in these posts it’s very rare for her to been seen wearing anything other than rugby kit, it’s also rare for her to be without a smile on her face, despite everything she’s been through.

Dani and her family are going to need support for a long time to come yet, again the rugby family has jumped in. A crowd funding page has been set up by her partner Peter, who just happens to be a player for Reading RFC,  https://www.justgiving.com/crowdfunding/daniwatts?utm_id=62 , two of the Sirens players, Sarah Leicester and SJ Garside have set up their own blog https://doingitfordani.wordpress.com/  as they will be undertaking fundraising on behalf of Dani and the RFU Injured Players Foundation. Sarah has managed to get herself entered into the London Marathon and SJ will be taking part in a channel swim relay. Links to their fundraising pages are in their blog. Other members of the Sirens squad have committed to enter the Reading Half Marathon, as have a number of the senior Rams squad. I’ve volunteered to take publicity shots of any of the fundraising activities that are taking place, and give any help on the back of the #Soulder2Shoulder fundraising I’ve done in the last 18 months or so.

At 3am in the morning when I’m coughing and can’t sleep and I’m feeling pissed off with my lot I’m going to try and think that there are people in a far worse place than me. I’d imagine that at 3am in the morning when Dani’s in pain she’ll not be thinking of herself, she’ll be thinking of others in far worse place than she is. 

That’s it for this week, I’m not too sure when the next update will be at the moment.

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder

How do you like your smoothies?

I’m writing this blog update wearing a thick sweater and the heating on, this after spending 7 days in glorious 28 + degrees heat, god it was a shock getting off the plan at Gatwick on Saturday evening.

This was our first visit to Gran Canaria and the jury is probably out as to whether we’d go back again. The hotel we stayed in was more 4* rather than the 5* we were used to staying in with the Barcello Group, and whilst totally adequate it was located a fair was out from the main part of the resort, resulting in either a 40 minute walk or a taxi ride each evening to hit the fleshpots.

I think I’d mentioned in the previous blog that our visit coincided with the annual Gay Pride Festival in Playa De Inglis (Translates as Beach of the English surprisingly enough). The flight out from Gatwick was fairly packed with folk obviously going to PDI for the festival. I think the Head Air Steward thought he’d died and gone to heaven on this Rainbow classified flight. I know that EasyJet are an easy target, but we’ve always found them to be vaguely on time and at least keep you updated if there are any problems. We arrived on time, our luggage was out quickly and we were soon in the hotel arranged transfer. We were on a half board basis at the hotel, with the option of having either lunch or dinner as part of the package. We ate out two nights, the rest of the time choosing to stay in the hotel and then pop out to one of the bars or clubs later in the evening. One of the main reasons for going out in the evenings was discovered when I trusted Carol to buy a drink in the hotel bar on our first evening. I gave her €50, went for a wee, came back to be give €25 change and a TRIPLE Hendricks with one tonic! Carol’s excuse was something along the lines of “That’s all they serve………. Hic” 

The Hotel ran a series of free bus transfers to the main beaches. PDI town beach and the more famous Maspalomas beach with its impressive dunes.

We decided to try the Maspalomas beach on our first day and crammed ourselves onto the beach for the 20 minute transfer to the beach. We were both standing up for the journey and it was then we discovered that there are more roundabouts of the route from the hotel to the beach than in Milton Keynes and Bracknell combined. This resulted in getting to know the person standing either side of me quite well whilst we lurched from left to right every few hundred metres or so it seemed. We eventually arrived at our destination and followed the hordes from the bus in the general direction of the beach. It was here that I first started to get a bit concerned. The wind at the beach was far stronger than it was back at the hotel, and as soon as we reached the beach I could feel the very fine sand that the island is famous for being blown up around my face. We persevered onto the sand and walked about a mile down to the beach to try and find a relatively sheltered part, with little avail. It quickly became obvious that fine sand, plus a strong wind, plus a stoma equals a pretty unhappy Mr Clark. The HME I wear to protect the stoma has, as a necessary part of its design, small gaps to allow air to flow in an out, otherwise I’d suffocate. A slight design fault is that the HME also allows find sand particles to penetrate and make their way down into my lungs. After having to try and clear out three times, each time removing the protective HME and each time getting more sand into my lungs we have up and retired to a bar, before getting a taxi back to the hotel and having a rather pleasant Sunday lunch and afternoon around the pool. We both thought that the chances of getting back to the beach again in the holiday were slim and it put a bit of a downer on the afternoon as we both love to spend time with sand between our toes.

That evening, to cheer ourselves up, we walked into what we thought was the main part of the town (We later found we were way out, but hey ho!). After having a couple of predinner drinks in one of the many “Commercial Centres” we ended up at a typical Spanish restaurant called El Poncho and had a superb meal. The starter of blood sausage with goats cheese in filo pastry was to die for, as was the main of salted cod that I choose. The restaurant had an interesting implement it inserted in the wine bottle that supposedly increased the airflow, but certainly decreased the speed in which wine could be poured. It was here that the Stealth Waiter made his appearance. As soon as I placed my hand anywhere near the bottle, as if by magic a waiter would appear to whip the wine out of my reach and pour a tiny amount into each glass. Through the couple of hours of our stay I was unable to get my hand on that bottle, despite my best efforts. It was a cracking night and lifted our mood, or perhaps the couple of Hendricks we quaffed in a bar following dinner helped. That bar was to become a regular haunt of ours over the week, run by a Dutch couple, they had an impressive choice of Gin and knew exactly how to serve them, be it with cucumber, pepper or even chilli! It was here that Carol decided she was going to play spot “Sam’s Arse” for the rest of the holiday, and point them out to me – you need to read "Why Mummy Drinks" to get the joke, but believe me, it’s worth it.

The next day we again tried the beach but I had exactly the same problem with sand getting into my stoma. This time we were at the PDI beach and after having consoled ourselves with coffee with had a walk around and discovered bars and restaurants all over the sea front. A brilliant lunch of sardines so fresh they were almost flapping followed and a walk back up the hill took us past a shop selling bandana’s……………….. you’re probably ahead of me here, but two were purchased as a potential solution to the sand problem. Despite looking a bit of a twat, they worked and the rest of the holiday could be spent lying on the beach with our toes in the sand. 

I was amazed by the number of obviously school aged kids who were staying at out hotel, not all were British by any means, but a fair proportion were, ranging for I guess about 7 years old up to teenagers. As far as I’m aware our break wasn’t in the school holidays, so I hope they all got permission from their respective schools. One of the kids was a nasty piece of work, she was probably aged about 10 and spent her time in the restaurant pushing past people in queues and generally being an obnoxious little brat! She and her family were say not far from where Carol and I were eating and the Veruca Salt look alike kept staring in my direction. She eventually got up and made a bee line for me, arriving with no introduction and shouting quite loudly, “What’s that in your neck?”. Now I’d made a promise to myself that if someone asked me what was up that I’d be honest with them, but this little shit got what she deserved, my replay to her was “Je ne parle pas Anglais” which seems to confuse her, maybe she should spend more time at school rather than swanning off on holiday in term time! There were a couple of other occasions of being stared at over the holiday, I let them go, but Matt Lucas’s bigger and fatter brother should look in the mirror before staring and commenting on how I look / speak. I was genuinely worried about reactions before we went away, especially as I do the majority of the talking when were away, but with a couple of exceptions everyone was fine, especially the staff at the hotel.

The rest of the holiday was pretty uneventful, with the exception of Carol trying to drown herself. The sea looked like a mill pond when she went in for a dip, but when she emerged back where we’d been sunbathing it was obvious something was up. She was bedraggled and covered in sand. When she calmed down she explained that she’d been in water just above her knees when three consecutive waves hit her, knocked her off her feet and dumped her into the sand. She was really shaken up and when I went to look at the beach it was evident that the wind had changed and the surf was really strong, I saw a number of people, men and women, dumped onto their backsides by the strength of the waves. The part of the beach we were on wasn’t covered by a life guard, so it was a case of buyer beware. I was thinking of going for a paddle myself, but Carols experience convinced me that it wouldn’t be a great idea.

We fell into the habit of beach in the morning, complete with bandana, lunch back either at the hotel or a local bar. An afternoon by the pool or napping (I’m still getting pretty knackered on a daily basis!). Dinner, then a few drinks in the bars. The Cita Centre where we tended to end up was an interesting place, made up of shops, bars and restaurants, mainly aimed at the German tourists. We used the March Bar before our favourite opened, it was quite amusing being there when England played Germany on Friday 10^th November. There was a moment when England looked like they’d score and my hand went up, before realising Carol and I were the only English people in a crowd of around 100 😊

Now it’s Remembrance Sunday evening, the cottage pie is made, the washing machine has been on all day, the red wine is open. Life is good, Lest We Forget –

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder

Leaving on a Jet Plane

(Click on the title for an audio treat)

The weekend was a little bit of a let down. I was still feeling the effects from the biopsy and coughing heavily, then to top it all my valve started to leak again on Saturday afternoon. This was a real downer as this one had been in less than a month, the shortest period a valve has lasted to date. Carol and I were at OBR for a sponsors lunch prior to the 1^st XV taking on our old friends from Barnstaple. It was when I was having my first pint that I noticed fluid leaking into my lungs, and as the day progressed it got worse (that didn’t stop me knocking back a few more pints though as Carol was driving!). Another 5 point victory for Rams who are now up to the nosebleed inducing position of 4^th in the league.

By Sunday it had developed into a full blown, drip, drip, drip leak. This means that I have to be careful what I’m drinking and how I drink. Fluids that are slightly thicker in texture are ok, water, wine and juice aren’t. I’ve developed a way of trying to divert the liquid when I swallow so it doesn’t go over the valve which does help, but invariably something will escape down and the coughing will start. This has meant that again I’m unable to use the FreeHands as I’m coughing so much and having to remove the HME quickly otherwise it’ll get ruined.

I mailed Caroline at the SALT Dept. and luckily she’s was able to replace the valve for me before I saw the consultant on Thursday afternoon.

The leak meant I had to postpone a much needed pint with a mate on Tuesday evening. As much as I’d have loved to have gone out, the thought of sitting in a pub and drowning wasn’t overly attractive.

We were a tad nervous when we arrived at RBH on Thursday afternoon, not helped by the car park being full, so I gallantly left Carol to find a space whilst I went to the ENT Dept. for the first appointment of the day. Caroline came out about 10 minutes prior to the appointment time and called us in. Typically the sodding valve wouldn’t leak when I drank some water for her, but she agreed that with us that going away for a week with a dodgy valve wasn’t a great idea. We discussed various options as it’s obvious the current valve system just isn’t working for me and settled on the DIY method. So, with a degree of trepidation on my part, the old valve was removed and I was tasked with plugging up the hole whilst we set up the replacement valve. Shaking hands didn’t help holding the torch still to locate the hole, but eventually I was plugged to everyone’s satisfaction. The process for “Insterting Your Own” is very similar to the surgical procedure that Caroline has been carrying out the last couple of times. It’s full of possible double entendres and I’m sure you’d be most disappointed if I didn’t use them all, so competing with Nigella on the “Smutometer”…..

“Make sure you find the right hole.”

“Give it a bit of a wiggle.”

“Don’t use too much lube otherwise it’ll slip out again.”

“Be gentle when you’re sliding it in.”

………… oh how we laughed. In the end it’s not quite as gruesome a procedure as you are possibly imagining, it also means we have peace of mind whilst we’re away on holiday that if anything should happen to the valve then we can replace it ourselves. I may video the process next time I change the valve so you can share in the fun. After having worn the new valve for just over 24 hours now the jury is still out as the whether it will be a total success or not. I’ve spent the last day coughing heavily, producing far more mucus than in recent times, I’ve also gone through a shed load of HME filters. I can also feel the valve sitting in my throat, I couldn’t feel the old one at all. It’s not an overly unpleasant feeling, but it’s there in the back of my mind. We’ll see how we get on for the next week and make a long term decision when we get back home.

Back in the waiting room it was pretty quiet for a Thursday clinic, we had 20 minutes to kill before my appointed time, and of course my mind started thinking. Looking at the board I could see that Cool Dude was in, as was the one and only Scary, the other names I didn’t recognise. The CNS Nurses were Annabel and Amy, I knew that if one of them was in the meeting with the consultant when we were called in that it would be bad news. They tend to be in on the meetings when the outcome isn’t great, I vividly remember our original meeting with Scary back in December 2015 when we met Jo for the first time. It transpires that Jo has now moved onto pastures new in the hospital and is no longer working in the Head and Neck Dept. The help and support she gave us in the early days, especially the very dark days just after Chemo and RT had finished will never be forgotten.

For the first time in months we were actually called in to see Cool Dude about five minutes ahead of the appointment. There was no sign of either Annabel or Amy so I started to breath slightly more freely. The results of the Biopsy Jury were in, and they were clear, there is no cancer showing on the lump they’d discovered. Cool Dude went on to explain that he was always fairly confident that it was nothing to worry about, but with my record of being pretty crap at getting better he wasn’t prepared to take any chances. Overall he’s happy with my progress to date and will continue to monitor me on a monthly basis for the next few months. My next meeting is scheduled for the beginning of December when I’ll meet again the surgeon who performed the Op. in June, apparently they like to keep an eye on the surgery patients so meet them once every four months or so. It’ll be interesting to see how I compare to other patients are roughly the same time span.

So, the holiday to Gran Canaria will be a chance to relax and enjoy ourselves rather than going away and worrying about the future. A silly o’clock drive to the airport awaits on Saturday morning, we should hopefully be relaxing by the pool with a glass of Rioja by lunchtime and ready to hit the night spots in my new outfit that Carol thoughtfully bought for me 

My usual way of packing for a holiday is to get far few things together, lob them in a suitcase and worry about what I might have forgotten when I arrive. Previous “Forgotten” items include flip flops, razor, razor blades, contact lens solution, underwear!! This year I can’t really afford to be so forgetful when it comes down to the medical supplies I’m going to need. To make sure SleazyJet don’t ruin our break by losing a suitcase or two I’ve packed three lots of supplies. One for my suitcase, one for Carol’s and a final one to be taken as hand luggage. I seem to have packed enough tissues to keep me going on the flight as if we were flying to NZ rather than GC. I am slightly nervous about the flight and how my stoma is going to behave itself. I’d imagine I could be the passenger from hell to sit next to if I’m having to cough and clear every few minutes on a four hour flight.

It’s very likely that a few #Stalker pics will appear on my FB page over the next week and I’ll be updating the blog when we get back home as I’m not going to take my laptop on holiday, we’ve better things to do with our time whilst we’re away 😉 Plans to be made, decisions to be taken, including as to whether I continue to write this blog for much longer. 

The last four months have been a real rollercoaster ride. From the fateful day at the end of June when I became disfigured for life, learning how to speak again, learning how to look after my stoma. Managing to put on some of the lost weight, going back to work in a limited manner. Finally, to getting the news that the latest biopsy scare is nothing to worry about. This should all now mean that the Clark family can get on with our lives without having the dark cloud of cancer hanging over our heads on a daily basis. It will always be there in the background and I’m sure that every time I have any aches or pains I’ll jump to totally the wrong conclusion. Cancer has changed my life for ever. When I competed RT and Chemo and was in remission it wasn’t possible to tell I’d even had cancer unless you looked very closely at my neck. Now it’s pretty damn obvious from first sight. I’d give an awful lot to not be like this, but there is no magic cancer tree. Onwards and upwards Rodney, onwards and upwards……..

Finally, by the time of the next update we hope to have some exciting news, albeit Penny may not be too chuffed.

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder