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