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 13^th > Friday 27^th 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 5^th 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 4^th 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 2^nd 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 2^nd 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

She Cannae Take It Captain, She’s Gonna Blow!

When I mentioned on the Peter and Jane FB page that my last update would be my final weekly update for a while I was amazed at the response it got. Folk were saying how much they enjoyed reading the blog, even with the underlying subject matter, and that they hoped I’d keep writing and publishing. Well, my intention was never to stop writing all together, more a case of publishing every couple / three week’s or when there was something interesting to say. I was very conscious that I could fall into the trap of writing for writings sake and publishing a long list of “On Monday I did……” rubbish.

I’m sure by know you’ll all have heard the story of the Ospreys Hooker, Scott Baldwin? Well in case you haven’t, Ospreys were down in South Africa to play the Cheetahs in the Pro-14. The players had been taken to a wild life park prior to the match and Baldwin thought it would be a great idea to stroke a lion through the bars of his cage (the lion was in the cage, not Baldwin). I’m sure you can guess what happened next…….. Baldwin must be the only player ever to have missed a match due to a lion bite! The story of Baldwin and the hungry lion reminded me of the only time I’ve been to South Africa. It was about 18 years ago when a good friend of mine got married in Jo’burg after moving down there. Originally I wasn’t going to go, but on the spur of the moment I booked a flight leaving late on the Thursday evening, and coming back three days later on the Sunday afternoon. I would be meeting up with two mates who’d sensibly decided to go for a two week holiday rather than a long weekend. The flight down was pretty uneventful once the RAF Rugby squad who were on the same flight decided to calm down and sleep rather than trying to drink the plane dry. We landed on time in Joburg, I eventually cleared customs, I don’t think they see many “Hand Luggage” only passengers, and made my way to the arrivals hall. Here my problems started, I realised I’d arrived in a foreign country with no idea where I was staying and no way of contacting the bride groom who was nowhere to be seen in the hall! I must have been approached by every dodgy taxi driver in South Africa asking if I needed a lift before Rob strolled (slowly) into arrivals with some weak excuse about heavy traffic or some such bollox.

My first impressions of Joburg where interesting let’s say. We reached Rob’s car and as it was 80 degrees I started to wind down the window, before Rob wound it straight back up again and deadlocked the doors “Better to be safe than sorry” he said. We drove off to some small retail unit so that Rob could pick up his suit ahead of the wedding the next day. I stayed outside of the shop to get some fresh air (ok, to have a smoke!) and was approached by a chap within two minutes asking in a very heavy South African accent what I was doing hanging around. The fact that he had a semi automatic rifle on his shoulder and was pointing it at me meant I gave a fairly stuttered answer rather than my usual glib sort of reply. In the country for about an hour and already someone is pointing a gun at me! All was eventually ok as Rob appeared from the shop with his suit, explained to the guard that I was just a poor tourist and off we went to my digs for the next couple of days. No, I know Joburg is in Africa, and I know elephants are in Africa, but I really didn’t expect them to be in the city. I was casually taking in the sights on the drive across town when rounding a corner there was an elephant walking on the opposite side of the road, I kid you not! I was both flabbered and gasted at the sight, until Rob, who’d seen my mouth drop open, explained there was a circus in town and the poor animal was probably just being exercised.

We arrived at the house I was staying at in good time and so began three days of hospitality that I think will never be beaten. All the people I met were amazed that I’d gone over for only three days and seemed really appreciative that Jim, Jools and I had made the trip from the UK for the wedding in the first place.

To get to my point of the story………… the wedding reception was held in the hills above Joburg in some sort of game reserve. Whole pigs, sheep and cows were being barbequed, wine of a quality you have to drink to believe was being quaffed and I was having a whale of a time. Around midnight the party started to break up and we jumped into any cars that happened to be going back down into town and drove at break neck speed back through the wild life park. It was here that I spotted a baby hippo walking all by itself along the side of the road. I was convinced it was lost and we needed to stop to pick it up and take it back to the circus (I’d drunk my fair share of potent red by this point!). However much I insisted the driver still refused to stop, his excuse being that if I got out of the car and stroked baby hippo there was a pretty good chance that mummy hippo might make an appearance and stoke me, the car and all the occupants too. To me it seemed like a pretty weak excuse, but he was driving and I was a guest, so I didn’t argue too much. Anyway, he promised beer if I would just shut the feck up about the cute little baby hippo!

We eventually arrived back into down Joburg at stupid o’clock and made straight for a bar frequented by the biggest and loudest Afrikaner’s imaginable. They were really genial chaps until, apparently, I spilt one of their beers, forgot to tug my forelock when apologising and wasn’t too fussed when pinned up by my neck against the wall. We escaped with our dignity just about intact and I woke up the next day none the worse for wear, other than a stinking hangover.

South Africa is a country I intend to re-visit, and for more than just a weekend. There is some dim and distant plan for Carol and I to go on the next Lions tour which just happens to be to South Africa, maybe this time I’ll be allowed to stroke a baby Hippo.

I’ve now had my first real business trip up to “That there London town” since my Op. I was really nervous as I would be in a two and half hour meeting with some folk I’d not met before and others who would have had a little knowledge of my condition. The train journey up was fairly painless, albeit with a ten minute delay, and I managed to get a seat which is always a bonus when travelling from Reading. When we arrived at Paddington I let all the other passengers disembark whilst I sorted out the stoma with a quick clearance. My current chest infection (it isn’t pneumonia as confirmed by the hospital following the chest X-Ray) means I’m having to clear out far more often until it clears up. A train guard boarded whilst I was still sorting myself out, he saw the HME filter on the chair next to me and said “No hurry sir, you take as long as you like.” I had to tube across to St Pauls which for those who don’t know the underground means taking the Bakerloo line to Oxford Circus and then changing to the Central Line. At midday neither line was overly busy, but by the time I got to St Pauls I was in need of another major clear out. I was slightly hampered really. As well as the chest infection, the valve had started to leak again which meant I was rationing how much I was drinking so as not to get fluid into my lungs. This valve has only lasted just over a month, whereby I was hoping the second one would go at least 6 to 8 months without needing changing. The effect of the valve leaking means that fluid leaking into my lungs comes back out again from either the stoma or worse, my nose, and at a rapid rate of knots too! Not something you’d really like to happen during a business meeting with external parties.The meeting was a painful necessity, but I managed to get through it ok without having to make my excuses and dash out of the room. The journey back home was all together more challenging as I caught the tube at St Pauls at 5pm along with all the other daily commuters, and it was totally jam packed all the way back to Paddington. At one point I managed to get a seat, but gave it up one stop later when an elderly lady got on the train and was standing up. I had a few people giving me second glances as my stoma was on view for all ‘n sundry to stare at, but there were no comments that I could hear. I was lucky on arriving at Paddington as a train going direct to Reading had just had its platform announced, so I threw women and children behind me as I raced the other commuters for a seat. I’ve not lost that much speed whilst I’ve been off it would seem as I easily found that elusive aisle seat and settled down with my iPod and kindle. This time I didn’t offer my seat to anyone who wasn’t quick enough, I’m afraid it’s every man for himself on the 17.22 out of town! By the time I stepped through the front door later in the evening I was well and truly done in. I used to really enjoy my regular trips up to town, the hustle and bustle of a big city gave me a buzz. I’m afraid all I wanted to do was get in and out in one piece, I hated being confined in crowds and I hated having to stop and clear out my throat in busy public areas, but I guess this is my future.

The one thing that I did enjoy about my trek up to town was being able to stick my iPod on, flip to Tom Petty’s Greatest Hits and tune out to great song, after great song. I was very sad to hear of Tom’s death on the previous Tuesday evening. Petty was one of those songwriters who was able to tell a story through his words, and he managed to seamlessly cross the bridge between rock and pop music. Perhaps not as well known as he should be, but I’m sure many people who wouldn’t know his work would actually recognise his songs –   Don't Come Around Here No More  

The saga with Countrywide has continued. Despite assuring me that they would update me on the progress of ordering my FreeHands supplies I’d heard nothing from them at all. So, I sent a fairly scathing email to their contact address advising of my dissatisfaction with their service, and explaining that I was now out of FreeHands filters, this in turn was having an adverse effect on my confidence. I’d asked for an update / response by close of business on Monday 2^nd October. When I hadn’t heard from them I sent another mail asking for immediate contact. Again, nothing happened so I called them myself on Wednesday 4^th October to try and find out what the heck was going on. The contact I spoke to again gave me very poor excuses as to why I hadn’t been contacted. She confirmed she’d received my mail, but couldn’t explain why I hadn’t been contacted. I insisted that she pass me onto her manager, who it turned out was aware of my case and had also seen my email! He also couldn’t explain why he hadn’t had the courtesy to respond, especially when I had explained my dilemma relating to the FreeHands filters. He blamed the hospital for not responding to them, I explained the conversation I’d had with the SALT team which seemed to put him on the backfoot. It was a very unsatisfactory phone call which left me feeling very frustrated and, to a degree, upset too. I’m not exaggerating when I say how much higher my confidence is when I’m using FreeHands, it’s like being a normal person again, instead of a freak who can only speak by pressing a button on his throat.  

I met Caroline my SALT on Wednesday so that she could change my leaking valve, she confirmed that she’d spoken to Countrywide last week and had told them that whatever FreeHands kit I was requesting was ok as far as she was concerned, so I’d got no idea what the heck the hold-up was. She’s since confirmed that Countrywide have agreed to get my order processed as a matter of urgency, after four weeks of chasing up! Hopefully now that this hiccup is over the ordering process will run smoothly, but I’m not convinced, especially if I’ll have to deal with the same person who’s basically lied to me over the past couple of weeks. The jury is well and truly out.

My requested supplies eventually arrived in the post, only to be lacking the glue I use to stick the baseplate to my throat. I mailed my mate at Countrywide asking if it was going to be delivered later. And guess what? He didn’t reply, a second mail was eventually answered, not by the Manager I’d written to, but by the Customer Service person that I’d got the real issue with. The excuse for not replying to the initial mail was again pretty damn poor, but she confirmed that the glue I required had been ordered and should be with me by “Return”. So, when on Thursday evening a parcel arrived at home I thought we’d finally got the issue sorted. What a poor deluded fool I was. Instead of the required glue, it was a duplicate of the order that had been received the previous week!!! FFS, how sodding difficult is this????? My email contained both barrels as to the total incompetence of the service I’ve received. I copied in the Manager, but based on previous experience I doubt very much he’ll have the balls to respond. I’ve received yet another totally unsatisfactory reply claiming black is white, despite me including my previous mails for reference. It’s now beyond a joke, the women who I’m dealing with is, as well as being a bare faced liar, totally incompetent.  

The actual process of removing the valve was a bit more painful this time due to the valve having a larger flange than the original. Carol came along to see how the process went so that in future when I’m able to do it myself she’ll be able to assist. After a couple of tugs, a couple of coughs and a bit of good luck the valve popped out and a new one was inserted. So, for the time being I’m back to being watertight and can happily drink fluids without worrying about trying to drown myself. 

I’m becoming increasingly concerned that the NHS I’m dealing with is almost at breaking point. Whilst the face to face service I’ve received from the medical staff has been outstanding, with the one notable exception when I was having RT and Chemo, I’m afraid the Admin side leaves a lot to be desired of late. As well as the issues I’ve had with Countrywide I’ve found I’ve had to chase up the admin Depts. at RBH far more often regarding future appointments. Whilst I was having my valve changed I took the chance to chase up when my pre-op assessment and biopsy would be scheduled for. I’d been promised a call early on in the week with the dates, but nothing was forthcoming. I managed to get the dates, but I’m not sure I should really have to chase up all the time. I’ve also received a letter giving me an outpatients appointment for 6^th November over at Thatcham! I’ve not been to Thatcham in the last two years of treatment and I’ve no intention of starting now. I called up the ENT Outpatients team to work out what was going on, only to be met with probably the most unhelpful member of staff it could be possible to imagine, I felt like telling her to apply for a job with Countrywide. She seemed to think that I’d had all my appointment at Thatcham. I’ve explained that I’m actually on holiday that week and wouldn’t be attending. She didn’t want to listen to anything else I had to say and just insisted that she’d send another letter with a revised date, and then hung up on me! I’ve mailed the CNS Nurses to see if they can advise of the best way forward. Hopefully they’ll respond, if not I’ll become a statistic of a patient who doesn’t turn up for an appointment. I know only too well from Carol’s day to day work experiences how badly stretched the NHS is at the moment, and I don’t suppose it’s a barrel of laughs working for any of the Depts. but is it too much to ask that promises of contact are actually kept too? Patients are usually in a fairly fragile state and want to know when their treatment will take place. I’m lucky in that I’m savvy enough to take matters in my own hands and make phone calls. I’m not sure that elderly and vulnerable people would do that for themselves, they may well sit at home and stress themselves out.  

   

Anna had been on a training course in Guildford for the early part of the week, and came to stay with us for a couple of days before heading back to Gods Own County. So, what else would you expect us to do on Friday night other than visit Nino’s for a family meal. I’d been lucky enough to win a bottle of prosecco in Nino’s MacMillan Coffee Morning draw, so I tasked Anna and Carol with necking the bottle, a task they were over qualified for it would seem. For the first time I can remember neither Nino was at the restaurant on Friday evening, I’d had an earlier message from Nino Jnr, but the restaurant was in good hands, the young lady who was in charge was as nervous as a bunny in the headlights, but she did a superb job on what was a pretty busy evening. The Nino’s should be proud that they’ve trained their staff so well that you (almost) don’t miss them if they’re not there. This was the first time Lary had been to our favourite eating place, and apart from a couple of minutes where he decided he was going to play silly beggars he was generally on decent behaviour. A menu which for me was mainly fish based certainly helped. As a slight aside, I’ve been avoiding red meat for a while now unless it’s minced. I thought it about time to see if I could now manage a steak following the improvements I think I’ve made in managing my diet and my eating. Bone in Sirloin was the meal of Sunday evening, and with the first bite I realised that I still can’t manage it. I was pretty upset as the taste was what I’ve been missing, I just couldn’t manage the texture. I will keep trying periodically, and I’ve told Carol and Max that I’m happy to cook steak for them, I’ll just choose something easier on the palette for myself.

Surprisingly enough the rest of the weekend was taken up watching rugby. Max played for the Mighty Cents at OBR against local rivals Abbey RFC. I’m afraid it was all a bit one sided. As usual I was taking photos and had positioned myself behind the posts the Cents were attacking. After about 5 minutes the first try was scored by probably the oldest player on the pitch. As the Abbey players gathered under the posts the skipper gave a rousing speech about how the Cents didn’t like the physical nature of the match and would just try to run around them. Well, he was right as the Cents ran round them to knock up 62 points! News filtered through that the 1^st XV has won comfortably on the road, and the Dragons Teeth (4^th XV) beat a young Beaconsfield side to make it three wins out of three for the club.

Sunday was a massive day for Redingensians. The Sirens, the ladies side, were taking part in their first ever league match having only been formed less than a year ago. They were taking on local rivals Bracknell Ladies (?) who were a far bigger and more physical side than the Sirens. But what the Sirens lacked for in bulk they more than made up for in core skills. 0 – 0 with ten minutes to go it looked all the world like the match would be settled by a break away, or a mistake. Luckily for all involved it was neither of those. Two blindingly quick bursts from Zoe Poole in a five minute period meant the Sirens ran out as 14-0 victors. The only sour note being the nasty injury to one of the outstanding Sirens players on the day. This put a bit of a dampener on the club house celebrations, but the ladies are learning about the ethos of a rugby team with each match they play.

#DoitforDani

It was whilst at OBR that I fell into a conversation with a little girl who I’ve known for some time, she’s the daughter of a friend of mine from the club. It was a very similar type of conversation I’d had a couple of weeks previously with a young child. She was asking about my throat and how I managed to speak, so I thought I’d get her to press the HME and show her how I managed to make noises (Note to self, next time tell them to stop pressing after 10 seconds or so otherwise I suffocate!). She played the push the button game for a couple of minutes and then wandered off. Only to come back a little why later to ask why I’d been ill. Again, I kept my promise to myself and explained that I’d been stupid enough to smoke and that was what had made me ill. She then asked why I hadn’t listened to my teachers who much have told me that smoking was bad for you…………….. How do you answer that one? If she remembers the conversation when she’s older and tempted by her peers, she’ll not smoke. And knowing her parents as I do they’ll have already taught their kids that smoking is a mugs game.  

I’ve discovered another slight downside to not being able to talk normally. Whilst in bed on Sunday night I managed to twist me knee, don’t ask me how! I’d taken off my baseplate and was just wearing a protective flap over the stoma which meant I had no voice whatsoever. This meant that when I had a sharp, stabbing pain in my knee I wasn’t able to let out my usual stream of expletives, all I could do was mouth “F**k, f**k, f**k!” it really doesn’t have the same release valve if you can’t hear the scream! I had to get sympathy from Carol by hitting her so she could see just how much pain I was in, not sure that was my wisest move, as she just laughed.

On Thursday I had my Pre-Op Assessment appointment at RBH. I guess I’m becoming a bit of a regular in the ENT Dept. as when I walked in I was greeted by the receptionist with “Hello Mr Clark, take a seat, she won’t be long.” (I hadn’t even said hello at this point.) The Pre-Op nurse came out about 5 minutes later and greeted me with “I thought I’d seen to back of you last time?” There’s nothing like feeling wanted is there? 😊 To be fair to her, I seem to recall saying last time that I hoped I’d never have to see her again. It was all a pretty painless experience as my “History” is fairly well known, she even confirmed they’d make a note of my tendency to have an adverse reaction to a General Anaesthetic. I’m now all set to go under the knife on 24^th October, rocking up at 7.30am so no food beyond 2.30am, it’s been a while since I’ve had a midnight feast, so I may go to bed on a full English fry up. We parted by again saying we hoped we wouldn’t see each other again, and whilst I was jocular in my delivery I got the feeling the nurse meant it…….

If you look back at the last six months or so of this blog there are a few subjects which raise their heads more than once. Rugby is of course up there, along specifically with Redingensians. Then there’s also the photography that I enjoy so much. Ignoring the obvious subject of cancer, the third subject mentioned on a regular basis is the Peter and Jane Blog written by Gill Sims. Apparently, my comments on the blog are reaching “Legendry” status (Not my words I assure you!) apart from when I mention a quick and simple lasagne recipe and then I get shot down in flames 😊 I received a message from Gill on FB a couple of weeks ago after my last blog, wishing me the best of luck for the forthcoming biopsy. She has her first book published later this month, it’s called Why Mummy Drinks Gill kindly sent me a copy of the book prior to it being published and at my request she addressed the parcel to Carol in recognition of her putting me with me over the last 35 years. Carol is known as the Current Mrs C. on the blog, most people get the (poor) joke, but I still get the odd comment which seems to miss the irony in being “Current” for 35+ years 😊

The above picture was taken roughly two minutes prior to Carol disappearing upstairs for a bath, glass of red in one hand, book in other……………. She reappeared a couple of hours later, all I’d heard in the mean time was giggling and laughter coming from the bedroom, I presume she was reading the book.

It’s now less than a month before we disappear off to Gran Canaria for a week of much needed sun and relaxation. It turns out that our visit coincides with the annual Gay Pride week which should make for an interest week in the bars and clubs of PDI. Whilst Carol was ordering her new #Stalker outfits for the break, apparently it’s not the done thing to be photographed in the same outfit two years on the trot, I was slightly concerned to see that she’d been searching for men’s leather boxer shorts, string vests and baby oil. I think I may forgo my usual No.1 all over hair cut before we fly out.

Today I’ve reached the grand old age of 55. Amy of the “Photo Shop” fame, sent me a lovely message on Facebook, I think she needs a few more goes before she perfects the art, but I've certainly looked worse.

Despite having the cancer thingy hanging over my head for the last couple of years I’ve never felt like it was a terminal sentence, I’ve trusted the experts from the NHS when they’ve told me I’ve a great chance of a decent recovery, and so far, with the slight exception of cutting my voice box out, they’ve been correct in their prognosis. I’m planning on hanging around for a few more years yet, I’ve got pensions I’ve paid into which I’d like to see a return from.

The next update will be in a couple of weeks. My biopsy is on 24^th October. As long as they don’t try and knock me off with the General I’ll be posting the back end of that week. I doubt I’ll have the official Jury results by then, but Cool Dude is pretty good at giving me a heads up when he comes around to kick me off the ward.

As always, thanks for reading these words.

To be continued……..

#Shoulder2Shoulder