Bring Me Sunshine…..

The period since my last update has been a bit of a challenge. The damn valve had started to leak again but this time instead of an intermittent drip it was a constant leak when I drank. This in turn meant I was coughing heavily, and in turn led to another chest infection. The valve lasted just over 3 weeks again and whilst it is one of the type I can change myself I was advised that the first one needs to be changed under supervision at the hospital. I was lucky in that Caroline from Speech and Language Therapy was free to see me on Monday lunchtime. We discussed the various options available and plumped on a slightly shorter valve at 6mm which may prevent air escaping into my stomach more than the 8mm valve had. Under Caroline’s supervision I managed to get the old valve out and the new one in, only a couple of times would three hands have been handy. There is one more option open to us with a valve which doesn’t let so much air in as the current version, if that doesn’t work then we’ll need to go back to the one that needs to be put in by the hospital.

We had a long chat about the way forward and I opened up about my concerns. Last weekend I attended a Quiz Night up at Redingensians RFC in aid of the RFU Injured Players Fund, a charity that is currently supporting Siren Dani whilst she recovers slowly from her injuries. (See last update for details!) I found the whole evening quite difficult, if I’m in a fairly noisy environment I struggle to make myself heard and tend to withdraw into my own shell. This happened at the quiz night, by the end of the evening I wasn’t talking at all as I was tired and struggling to make myself heard. Max and I left before the end of the evening as I was beginning to get upset with myself. The rugby club hold a number of major social events over the year, the Christmas party is coming up in a few weeks, Carol and I have been to every event going for the last five or six years, but we won’t be attending the Christmas party, I can’t bring myself to sit in a room full of people partying whilst I’m struggling to communicate. I explained all this to Caroline and my thoughts that once we got back from holiday that everything would be ok and I’d be back to normal. She explained that whilst I’m well ahead of the game as far as my recovery is going, and my voice is much better than most people who’ve been through the same procedure, it is still very early days. Because I found talking after the operation to be fairly easy I’d never bothered to take up the offers of specific speech therapy, in my usual manner of “It’ll be all right in the long run” I thought I’d just keep improving. Caroline has offered to run through some specific breathing exercises with me and would see me again later in the week to trial an amplifier system which may make talking in crowded places easier for me. I left the meeting feeling far happier than when I arrived, opening up to someone that I’m not really coping that well is cathartic and something I really need to do more often.

I was back in the ENT Dept on Thursday as promised to trial out the amplifier systems with Caroline, there were four to try, ranging from a pretty basic and clunky system, up to a state of the art piece of kit. Think of the basic one as a Nokia 3210 and the state of the art one as an iPhone 8. They all work on roughly the same basis. A speaker pack clips to your belt, wires extend to a microphone and away you go. The differences between the systems seemed to be down to the compactness of the speaker units more than anything else that I could see. The midrange system seemed to be the best suited to me and rather than using a microphone in front of my mouth I used a throat microphone that worked on the vibrations just above my stoma and roughly where the voice box used to sit. It also meant that I didn’t look like a total dick or a taxi driver. None of them were perfect, feedback is one problem they all had, and the throat mic was incredibly sensitive to any movement at all. Caroline left the room at one point, closed the door and asked me to shout something. So, at the top of my voice, I shouted “HE’S OFFSIDE SIR!!!!” – She heard me, as did most of the staff in the ENT Dept, and I believe a few drivers on the London Road braked sharply 😊 Caroline confirmed that the NHS has no budget to fund these toys, so if I want one I’ll have to buy it myself.  It’s not something I’d use all day, every day, but for something like rugby matches or possibly social events it may make life easier and stop the strain I put on my voice whilst trying to be heard. It’s probably equivalent to an iPhone 6, not the latest kit, but still pretty handy.

A couple of weeks ago, I met up with my boss in Reading for a general catch up and chat about my working hours. The day just happened to coincide with my chest and throat both playing up badly which meant I could hardly talk and had to change both the base plate and the HME filter whilst we were meeting. I’d been struggling a bit at work again of late. I’ve avoided using the phone unless it’s totally necessary. When we came back from holiday I committed to myself that I would be working full time again, but when it came to it I’m still not fit enough, I still need to sleep, I still can’t promise that I’ll be able to speak properly, I’m still not fit for purpose. We’ve agreed that we’ll review the position after Christmas and see where I am then. Talking of Christmas, as you’d probably expect with the industry I’m in, we get quite a few invites for Christmas entertainment. We have to get clearance from the powers that be to attend (Anti Bribery and Corruption laws), and I’m down for four events so far, however I’m not sure if I’ll attend all of them due to the communication problems. I’m also nervous about staying away from home, no idea why really, other than I haven’t been away from home without Carol being with me since the operation. The first Christmas party is in a Brazilian Steak restaurant next week in Manchester. The shame is that at the moment about the only food I’m still really struggling to eat is steak, I guess I’ll be going for the veggie option then. Three and a half hours on the train each way should also be a bundle of fun, especially as I’ve had to book to go via a London route to save money on the cost to the bank.

I’ve decided that the current cold and damp weather doesn’t really agree with me. I went to watch the Mighty Cents play rugby on the coldest day of the year to date, the idea being to get some great photo’s in what was a brilliant light. Dog wearing Rams coat was the best shot I got. 

Instead I spent most of the first half clearing my throat and nose rather than snapping away. I left at half time, I just couldn’t handle it. By the time I got home I was physically knackered and mentally drained. I’m in a difficult place, as whilst I need to wrap up warm (my immune system in still weak), I can’t actually cover up my stoma with a thick scarf otherwise I can’t actually breath! I’m not sure of the solution yet, I just hope it isn’t a case of having to stay inside until the Spring. Maybe Carol and I should just buy a place on the Canaries and spend October to March there each year. As I tend to work from home anyway, I’m sure Santander wouldn’t object. The two weeks or so since the last blog update have been pretty typical of day to day life. With the exception of two visits to the hospital I’ve hardly been out of the house at all during the week. My trip to watch rugby was curtailed, the Quiz night was tough going. I’m in danger of isolating myself from friends and need to make more of an effort.

I mentioned a couple of updates ago that we hoped to have some exciting news to announce. I’d been talking to a breeder of Kromfohrlander puppies. We’d been recommended by Sidney

 

as potential owners and had been provisionally offered a pup subject to us visiting to make sure we were suitable and to make sure we took to the pup. We were within a few of days of travelling down to Dorset when I had a couple of bad days with the throat / stoma / chest (Delete as applicable). To take on a puppy is a massive commitment, he’d need constant care and attention as well as a couple of decent length walks each day. Whilst the exercise would do me a world of good we eventually decided that I’m not in a position to commit to the time he'd need daily. We therefore, reluctantly, but sensibly, decided to pass on the kind offer and let the pup go to someone who’d be able to give it the love and attention he deserved. I’ve been following the breeder’s posts on FB showing the puppies going off to their new homes, not sure that was such a great idea as each puppy looks so cute! We’ll give it a few more months to see how I get on, but I suspect that within the next 12 months we’ll be hearing the pad of tiny paws in the Clark household.

That’s about it for this update. Carol and Max are off to Portsmouth on Saturday to look at the Teaching Uni Course he’s applying for. He’ll make a bloody good teacher if he gets his degree. I intend to take photos at the rugby this weekend. Rams are still in 4^th place in the league and are hosting Bury St Edmonds RFC who are a couple of points behind in 5^th, so it should be a tight match. On Sunday the Rams Sirens take on London Irish Ladies in their next league encounter. The forecast looks ok, the temperature should increase from the current Baltic like conditions, all is well in the world. 

In the last update I mentioned that instead of feeling sorry for myself I’d try and do a Dani and think of others in a worse place than me. I realise that whilst reading back on this update prior to publishing that it comes across as a bit of a “Woe is me” but that’s not how it’s meant to look. I’m not feeling sorry for myself, I’m being realistic. I have good times and I have crap times, it just so happens that the last couple of weeks have been pants, I can’t change that fact and I can’t sugar coat it. On Monday morning (no idea why it’s Monday and not the usual Thursday afternoon appointment) I’ll turn up at the hospital for my monthly check up. More Scary than Scary will no doubt stick a camera up my nose and down my throat, look bored and ask a couple of questions, then he’ll say there’s no sign of nasties and bid me on my way for another month. That means I’m still cancer free and that means that however much I may bemoan the fact that I’m not really keen on the cold, it doesn’t matter one iota.

As always, thanks for reading.

To be continued……….

#Shoulde2Shoulder