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