Friday 27 October 2017

Bookends

This is the second blog posting over a two week period rather than the regular weekly posts. I tend to write the blog as I go along, so if I'm feeling pissed off or down one day then that'll probably reflect via the writing. Equally, if I'm having a great time the chances are that the writing will be upbeat. So, please bear in mind when you're reading this update that a lot can happen in 14 days. 

Friday 13th > Friday 27th October.

My birthday weekend was a case of some up’s and some down’s. Mainly throat / speaking related. On the Friday night, we decided to go into town on the spur of the moment and have dinner at Just Greek, a restaurant I can manage as the meze style dishes mean I can eat as much or as little as I like. We started the evening in Artigiano’s, which by day is a coffee bar, but come the evening it morphs into a rather chic bar. A couple of large glasses of merlot for Carol and I, and a pint of cider for Max. It was at this point that the evening took a bit of a dive. My voice decided to play silly beggars and just about disappeared for the evening. Whilst this isn’t the biggest problem in the world it does put a bit of a dampener on communications. It was left mainly to Carol and Max to do the talking for the evening, and I just nodded sagely in the right place.

Our initial plan was somewhat scuppered when we arrived at an empty Real Greek at 7pm to be told they were fully booked and couldn’t seat us. It was probably just as well my voice was shagged otherwise I’d have suggested to Zorba that perhaps seating three people wouldn’t be too much of a challenge and we’d have been in and out within an hour. No wonder the Greek economy is on its backside! So, over the river we went and settled on Browns instead. I’d not been before but I was pretty impressed by the food, service and reasonable bill at the end of the night, however the highlight had to be the Expresso Martini I had in place of coffee, blimey it was good. 



Saturday was another swings and roundabout type of day. My voice started off fine and I was using the Freehands when I arrived at rugby for the Rams vs Broadstreet match, but within probably two hours I’d had to change back to the push system and was having real problems in making myself understood. It was another good win for the Rams side, the second week on the trot when they’ve scored 47 points. They stand 5th in the league now which I believe is the highest ever in the clubs history. With a couple of eminently winnable games coming up it’s possible to see the nose bleed inducing 4th position not too far on the horizon.



Sunday was a slightly better day for my voice, but not good enough to use Freehands as it actually takes more effort to produce a voice and unless the airways are really clear it’s not worth the effort.  
Monday hit the real low point. By lunchtime I could hardly talk at all and for around 30 minutes I has no voice whatsoever which was bloody annoying and embarrassing as I was in company. A horse whisper eventually returned so communication was possible, just about. By the time I got home early in the evening I was becoming more and more frustrated and took myself off to the bathroom armed with my trusty cleaning pipe to give the valve a good old poking. I’d done this a couple of time during the day to no avail, but this time I managed to dislodge a large and solid lump of gunk that had obviously been blocking up the valve tube over the previous few days. The effect was immediate, and probably similar to removing a large lump of wax from your ear. Suddenly my voice was strong and breathing was no longer a gurgle. Tuesday continued in the same light, with a decent voice for most of the day.

I’ve now realised that there is a direct correlation between how strong my voice is and how confident I feel in myself. Just before I managed to shift the blockage on Monday I was feeling so low and depressed, but once it was clear again the world suddenly looked a much better place. I’ve been pretty careful with the way I’ve been looking after the stoma and valve so I know there’s not much else I can do to prevent blockages of skin irritations, I guess I’m just going to have to get used to good days and bad days from a voice perspective.

I had my second trip up to “That London Town” for another work meeting. This time it was a slightly more sociable, midday to 3pm. I met a college at Paddington and we travelled across to Baker Street together, chatting away all the way. I’d decided to try out the FreeHands for the day and used up my last supply of skin glue in the morning, confident that Countrywide would deliver on their promises to supply me with more glue in the next 48 hours. It was a good day, I was far more confident in speaking to people with the Freehands. I met team members I’ve not seen since the Op. and didn’t feel out of place. To a man they commented that I was looking far better than they envisaged I would. Physically I’m not doing too badly at the moment, my weight is stabilising at around 82kg, the “Desperate Dan” chin has largely disappeared, other than the shagged out throat and strange protrusion, I could almost be classed as normal. Mentally it’s an entirely different story. I’ve been waking at 2am > 3am most mornings now for the past few weeks. Scientists have proven that this sort of time is the lowest of the low when it comes to being awake. I know I’m going to struggle to sleep again and lie tossing and turning hoping that sleep will return. This is when the dark thoughts start. It’s very easy to start thinking that life isn’t actually that much fun at the moment. When I’m lying down it actually places quite a strain on the scar tissue in my neck, the stoma is also stretched and quite sore at night. It’s very easy to give the outward signs of “Everything is fine” but sometimes it just isn’t. Then, the real truth gets up and smacks you in the face. When the meeting in town finished, five of us disappeared to the nearest pub and had a pint, the first I’ve had with colleagues since last Christmas. I showed the guys how the FreeHands worked and also swapped it over for a push HME to show the difference. One of the guys asked how I actually felt about the way I had to speak now, and it was then that a wise old sage commented, “Well, it’s better than the other option isn’t it?”.

Some months ago I mentioned that I’d asked my CNS Nurse what the outcome would be if I didn’t have the voice box removed. I’ll now share with you exactly what she said –

“If you don’t have the operation your voice will continue to deteriorate until you can’t speak at all. You’ll struggle to eat solids, you’ll be unable to drink fluids. You will be in a lot of pain and need constant medical care. You will die a painful death.” 

- That is why I had my voice box removed and this is why when I’m feeling pissed off with my lot I look at the alternatives and I think of people who are in a worse position then I am.

I managed to wear the FreeHands all that day up in London and into the evening when I got home. I’ve discovered that alternating between FreeHands speech and covering the hole to speak means it’s less likely to blow the gasket and gives my voice a bit of a rest.

I was beginning to get a bit anxious about the biopsy and the results they may find. There is bugger all I can go by worrying about something I have no control over though, so getting worked up isn’t doing me or those around me, any favours. I’m now looking at this procedure as a book end to the past 7 months. In May Carol and I went off to Fuerteventura for a week prior to me going straight into hospital on our return for the biopsy that discovered that the cancer had come for another go. This time, the biopsy was just before we go away for a week to Gran Canaria. So, in my mind this can be an end to the whole “I’ve got cancer” bollox that has plagued my life for getting on for two years now. There is one more connection between getting the bad news and now. Just after the second diagnosis I went to my GP and got a prescription for Ensure energy drinks to boost my intake of calories. At one point my office sofa looked like a cash and carry warehouse, it was stacked up with carboard cartons of the stuff! This week I’ve finished the last four drinks, another bookend to add to the list.

I’m afraid to say that the Countrywide problems just continued. I was told earlier in the week that they had finally had agreement to supply the necessary skin glue to allow me to use the FreeHands more easily, but it was out of stock and would be sent to me as soon as possible. Now call me an old cynic, but I found the excuse of it being out of stock difficult to believe. There are roughly 10,000 Lary folk alive in the UK at the moment. I’d imagine that at least 50% and probably more use Countrywide, out of those 50% probably something like 2,500 use skin glue, there are five different types of glue in their catalogue, and it’s all out of stock? On Thursday evening at around 6.30 the door bell rang, the usual time for Parcel Force to deliver my goodies. So, with mounting excitement I opened the massive box, fully expecting to find the elusive jar of glue, only to be greeted by a box of adhesive remover………….. of which I’ve already got three unopened boxes! It was a severely pissed off person who mailed the idiot I have the misfortune to deal with at Countrywide to ask why on earth she’d not sent what I’d requested. She couldn’t even use the excuse that she misheard me as I emailed my order and included the catalogue reference number. The reply I received the next day was unbelievable, apparently the mistake was down to my GP misunderstanding the prescription request! Again, I was promised that the order was being rushed through for me, this time there was no mention of the items being out of stock, it seems she can’t remember the tall tales she tells me. 

The miscreant glue finally arrived on Friday evening, so it was with a feeling like Christmas morning, that I prepared my neck for another Saturday at Old Bath Road. To a degree it was a success, I did need to change the baseplate at one point, and had stupidly forgotten to take the glue with me (After all that time of waiting!!) which meant the second plate wasn’t as sticky as it should have been and in turn by the end of the day it was blowing slightly, a bit like storm Brian.
It was another 5 point win for Rams who remain in fifth place in National 2 South. Next weekend is another home match at OBR when Rams take on our old friends from Barnstaple, or Barum as they prefer to be known. Readers of this blog for last year may remember my posting the last time Barum came to OBR, my ribs are still recovering from the hug I received from their Team Manager, Verity. It will be a pleasure to reacquaint.

I was chatting to a good friend whilst at OBR and the subject of the club Christmas Ball came up. In previous years Carol and I have always attended to the Christmas Ball, even in 2015 when it was held the night after my first biopsy which went tits up on me. It’s usually a black tie event which got me thinking. It’s unlikely I’ll ever wear a tie again, be it a normal “Hanger” or a bow tie. I noticed when I was in London earlier in the week that I was one of only two people in the meeting who wasn’t wearing a tie. I’m still struggling somewhat in social situations, when there is a lot of background noise, to make myself heard. Initially I was going to say no to the party, but when I was thinking about it when I got home I decided that it would be good for us to get out and act normally. Why should Carol not go to parties just because I’m not 100%.



On Tuesday morning, bright and early, we arrived a Dorrel ward for what would be either my forth or fifth biopsy (I’ve lost count). For once I was the first patient to arrive for the morning list and was soon at home in my single room wearing my rather fetching Reading RFC coloured tights



The room was a bit like Piccadilly Circus at rush hour. First a couple of nurses came in to check I knew who I was, then it was the turn of the Junior Registrar, who looked like he could do with a good meal and an hour or so in the sun. Next up was the anesthetist who I was glad to hear knew all about my history of “dying” under the influence and had come up with a cunning plan to make sure it didn’t happen this time. Another quick visit by the nurse to take my blood pressure, temperature and pulse, and to ask if I knew who I was again (?), then finally the main man, Mr Cool Dude sauntered in to check I’d bothered to turn up and to ask me if I knew what they were planning on doing today. My reply of “I’d rather hoped you knew what you were doing” went down pretty well if I say so myself. At 8.30 we made our way down to the theatres to be greeted by half the staff at RBH or so it seemed to me. There were at least 8 people in the theatre and all of them seemed to want me to do something at the same time as each other, a bit difficult to argue to the toss when I haven’t got an HME in, so can’t actually speak to them. Eventually, I disappeared off to the land of nod and they got to work on me. I woke up in Recovery about 90 minutes later with no crowd of nurses around me, so I presumed that they hadn’t killed me again. My throat was very sore when I woke, much worse than it had been on previous Biopsy’s, I’d been warned that this would probably be the case and would last probably two or three days before slowly getting back to normal. Back on the ward I was offered the obligatory cup of tea and slice of toast, the tea went down well, the toast I struggled with due to the soreness. My ob’s were checked every 20 minutes until Cool Dude arrived. He didn’t really give any indication as to what had been discovered other than to say that the operation had gone well and he’d see me in Clinic on 2nd November by which time they’ll have the results of the biopsy. He advised me to take it easy for the next couple of days and to expect some blood when I’m clearing out the stoma for a while. With that I packed up my things, thanked the nurses for their attention and hoped I’d not see them again, and went off to find Carol so she could act as my taxi and take me home to a bowl of soup (difficult to get down) and another cup of tea.

I’m afraid that the rest of the week was a write off. Previous biopsy’s have been fine (with the exception of killing me obviously). I’ll have been at home, resting up, but not really feeling any adverse effects. I needed to go into town to get some printing done on Wednesday, as I’m not allowed to drive for 48 hours I got Max to take me in and thought it would be an ideal time to grab some lunch together. I hadn’t had a great night’s sleep on Tuesday, but apart from blocked sinus’s I didn’t feel too bad, so into town we went. I managed to get the printing sorted out and as we had to wait 90 minutes to get the photo we decided to see if Real Greek could spare a table for us this time. It was here that things started to unravel a bit. My blocked sinus’s decided to become unblocked, my throat that had been vaguely behaving itself decided to play merry hell with me, and I started to struggle to control my coughing. I went through three base plates and five HME’s in the space of a couple of hours, and by the time we got back home I was totally knackered. Max was called into work early, so I spent the afternoon alternating between dozing on the sofa and coughing up bloodied gunk into a bucket. The constant coughing meant it was impossible to wear a base plate and HME which in turn meant I couldn’t talk. It was a frustrated, tired and slightly upset person who took himself to bed with a rather large glug of morphine. Morphine has a strange effect on me when I take it at night. I don’t always drop off to sleep straight away, often I’ll be in a sort of “Floating” state of consciousness, which isn’t overly unpleasant, but it does mean you’re not actually sleeping. I woke at just gone 9am on Thursday morning, thinking I felt 100%, then I got up and realised I actually felt crap again. Another duvet day I’m afraid. I guess the difference is only to be expected, now that all my breathing and speaking is being managed by the same small hole that the surgeon took a couple of lumps out of, is it any wonder I’m in a bit of pain? Friday wasn’t much better either, I was supposed to be back at work, but the combination of a really crap night and a morning when I could hardly go longer than five minutes without clearing out my throat meant that I just wasn’t up to doing anything other than lying on the sofa feeling very pissed off with my lot. Although the week is ending on a bit of a downer I do know that it's just temporary and that by the end of the weekend I should hopefully be back to some sort of normality. It's ironic really that earlier in this blog I was moaning that I hadn't got the right kit to use the FreeHands kit on a daily basis, and now when I have got the supplies I can't use it because of the coughing! At some point, in the not too distant future, all the planets will align! 

Regular readers will know that I’m quite keen on photography. It took me a while before I coughed up and purchased a license for Lightroom / Photoshop, but the last 12 months has seen my presentation improve I like to think. Until recently I’ve very rarely used Photoshop, I edit my shots for crop, contrast, clarity, colours etc in Lightroom. Photoshop has been solely the territory I used for sticking someone’s head on another body 


In the last week I’ve been playing around a bit more with PS and created a couple of multi layered shots which I’m quite pleased with for initial attempts. Every time I publish a blog I use a header photo, and there are usually a couple of shots within the body of the blog too. So, with the 2nd anniversary of #Shoulder2Shoulder fast approaching I thought I’d create a montage of shots that I’ve used over the time I’ve been writing. (Just gone over 130,000 words too with this blog!).





That’s about it for this update. I will probably post a brief update next week after I’ve had the results of the biopsy. Then Carol and I are off to the fleshpots of Gran Canaria for a week of well deserved (on her part) sunshine. It turns out that our visit to PDI coincides with the annual Winter Gay Pride week of festivities, the place apparently gets rammed, but the nightclubs and bars are a total scream according to a couple of people I’ve been speaking to. Carol seems to be getting quite excited at the prospect of me being let loose amongst a group of young German boys with my “Camp Darth Vader” voice. I was slightly concerned when I caught her browsing “Tight Boy Shorts” on Amazon though, and put my foot down when she was hovering over the “Add to Cart” button. There will be no photo’s to protect the guilty!



As always, thanks for reading.

To be continued……..


#Shoulder2Shoulder

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