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

I’m a MUG and I’m proud!

The weekend was a bit of a rollercoaster, some up’s, some down’s and a bit of flat stuff too. I eventually decided to go over to Chinnor to watch the Rams 1^st XV and as Max wasn’t working he came along for the ride too. I think he also remembered that Chinnor do one of the best burgers on the circuit. I had it in my mind that the match was a 2pm kick off for some reason, so we kicked our heels in the bar for a couple of hours on discovering it was actually 3pm k/o, opps. The match was a strange one which never really seemed to take off as a spectacle as far as I was concerned. Rams too an early lead and went into half time all square at 14-14, it all went a bit downhill from there with Chinnor running our as comfortable winner by 36-14. I’d always remembered Chinnor as quite a passionate place to watch rugby with the locals really getting behind their team. There didn’t seem to be any of that last weekend, unless I just wasn’t in the right mood for it. I only took around 200 photos when I’d normally expect to shoot around 350 > 400 and those I did eventually edit weren’t up to my normal standards. A pretty early night followed on Saturday as tiredness had taken over, dinner had been a struggle so bed was a better option.

Sunday was one of the highlights for me as the Rams 1^st XV and support staff turn up to help the Mini Section train and then have the fun and games of a Q&A session in the bar afterwards. 

I went up to OBR and got some cracking shots of smiling faces, and that wasn’t just from the small players! It’s great that the Senior players give something back to the club, they always seem to enjoy the experience and the youngsters certainly enjoy being coached by the players, they’ll hopefully be along on Saturday to see their heroes on playing on the pitch. For both Saturday and Sunday at rugby I wore my “Hands Free” kit and managed to get through a good few hours before having to change over to a normal push HME filter. The reason for the change on Saturday was vaguely amusing as one of the guys from Rams reckoned I’d got my Welsh filter in as I was sounding decidedly as if I was from the Valleys 😊 Now wouldn’t it be a great idea if you could get different accents from the filters? On Sunday I was showing a couple of friends how the system works, ie you twist the filter until you get the correct air flow to enable sound to be produced. This spurred on one wit to announce that they’d now found my volume button, and if I started to talk bollox they could just turn my off at the throat button!

I was again very flat when I got home and edited the pictures. I was very, very tired and even an hour asleep couldn’t shake the lethargy. A slightly better attempt at eating dinner, but still not great and I’ve dropped back under the 80kg figure again ☹

Some of you will be aware of the Peter and Jane blog that I follow and comment on from Facebook. The author of the blog is the very talented Gill Sims and her debut book is being published in October. It’s called “Why Mummy Drinks” and will be available via most outlets to pre-order (ie Amazon!). She is also releasing the book in audio form and declined the offer to read her own words. So, the publishers searched far and wide before coming up with Gabrielle Glaister as the perfect voice for “Mummy”. Most of you will probably know Gabrielle best as the actor who brilliantly played “Bob” in Blackadder.

 The way that Rowan Atkinson managed to use the simple name “Bob” to such great comic effect was pure genius. I guess it was around the late 80’s / early 90’s that Blackadder was at its peak. At that time I was working at Security Pacific in Reading. We had an “In House” lawyer called Robert Holmes, he was very Welsh and not known for his sense of humour. It took about two episodes before Robert became known to one ‘n all as “Bob” and he didn’t take it at all well. It was not unknown for people to come up with spurious reasons to consult the on tap legal eagle in his office. The conversations didn’t take too long. It would usually be something along the lines of :

Collector “Hi, have you got a few minutes to run through a case with me?”

Robert “Yes, come in, I can give you 10 minutes, what’s the problem?”

Collector “Well………… “Bob”….. I was hoping……..”

Robert “GET OUT OF MY OFFICE YOU PIECE OF SH*T”

Of course the office door had been left open so the rest of the staff could hold a sweep stake on how long before “Bob” blew his top!

I’m getting a bit concerned with Countrywide Supplies, the company who are supposedly my one stop shop for my filters, bases plates, etc. Over three weeks ago I called them to discuss changing my prescription order to reflect that I’m working with the hands free system but I’m relying on supplies given to me by Caroline at RBH. Countrywide said to leave it with them and they’d sort everything out for me. Well, three weeks later I still hadn’t heard anything so I called them back. The girl I spoke to gave me the biggest load of bullshit I’ve heard in a long time. She umm’d and ahh’d her way before saying that Caroline had been on holiday and they couldn’t contact her. That was a blatant lie as I know Caroline has been working as I’ve met with her! I let loose at the poor girl on the phone, the one who’s supposed to be my day to day contact. I realise I’m lucky to be getting all these medical suppliers free of charge, but I’m not overly lucky to have to be using them in the first instance, and I certainly don’t appreciate being lied to. If they’ve cocked up and forgotten the order then that’s fine, just admit it and get it sorted out. I’ve been promised that the order will go in without delay, but I’ve no confidence that I won’t be calling them up again in a week’s time. (At the time of publishing they haven't reverted to me!)

Thursday was a full on day. An early appointment at my Opticians as my latest bunch of lens have been splitting after a couple of weeks, rather than lasting the one month they’re supposed to. I’ve used the same opticians for probably the past 20 years or so and whilst perhaps not the cheapest, they do offer a great service. The long and short of the appointment is that my lens is being changed to one slightly more robust at no extra charge and a free sample was provided on the spot. I had an hour or so to spare after my visit to Eyesite so I decided to get the now normal “No.1 all over” done as my hair was getting a bit flyaway J There was a girl in the barbers who I hadn’t seen before, I’m pretty sure she was Polish, when I say down in the chair she asked if I minded telling her about “Lary” and whether it was down to smoking? I explained that whilst it had never been proven in my case it was highly likely that was the reason for the cancer. She explained that she’d been nagging her boyfriend for ages to pack in and would be telling him about me when she got home. I wrote down the blog address for her, so if you’re reading this, hopefully your boyfriend will take notice. Last Sunday, whilst up at OBR, a young lad of about 5 or 6 tugged at my trousers and asked why I spoke with a funny voice. I’d already decided that I was going to always answer that question the same way. “I was stupid, I smoked, so don’t smoke when you’re older.” The little lad looked at me and just said “Ok” before wondering off to do something far more interesting than talking to an old bloke.

Thursday was also my first meeting with the Reading Lary Club. I’ll admit that I was a bit nervous beforehand, almost like being the new boy at school. To a man (and one woman) they were a great bunch and it was interesting to be in a room with everyone speaking via a Lary. There was only one chap who was using Hands Free and he admitted that sometimes he struggled with it. I was by far the newest member, the oldest Lary was done over 20 years ago, the newest, (bar me) was about 2 years ago. Caroline from Speech Therapy was there and gave a short talk about how it’s possible to smell by using a technique she showed the group. She passed around half a dozen items for us to have a sniff at. The only one I could smell using the new technique was Marmite, so, it looks like I’ll have to do some homework to get this working. Having a sense of smell back would be wonderful. The rest of the meeting was really just spent chatting in general, and as the new boy there were a fair few questions winging my way. I didn’t mind at all, and in the next few meetings I’ll make sure I chuck my fair share of questions back as being able to pick the brains of guys who’ve been there and got the T-Shirt will be valuable to me going forward. Whilst in the meeting Caroline had a quick word with me about Countrywide, she confirmed that they’d been trying to contact her, but due to her schedule they kept missing her, she’d left a message suggesting they email her! I explained that I was getting more and more pissed off with them, and whilst I’m not short of supplies yet, I haven’t got confidence that they’ll supply if I am short. I do have the option of using another supplier, so unless Countrywide get their act in order I’ll be off to pastures new.

The meeting broke up just in time for me to get down to the ENT Dept. for my scheduled meeting, well by the time I got seen the meeting could have gone on for another hour, they were running that far behind. I eventually got called in to see a Dr. who I’ve not met before. I’d hoped to be seeing either Cool Dude or More Scary than Scary as I had a few concerns from the last couple of weeks, but hey ho, NHS customers can’t choose their consultants. The last time I was in More Scary than Scary was a bit concerned about a part of my throat that wasn’t looking too great, hence the request to stop using the Lary tube. The new Dr. shone her torch down and was happy with the stoma size, it hasn’t shrunk over the past couple of Lary free weeks, but she was a bit concerned that the white bit was still there about two inches down in my throat. She called in Cool Dude for a second opinion and he’s decided that due to my history of being really, really, really shit at getting better, they’d better do a biopsy on the little blighter to make sure it’s not another nasty. The question now is can they do it under a local, or do I need yet another general? The challenge will be the airway and how I can breath if I’m under. He asked me my opinion on the matter which I thought was quite brave of him as my knowledge of cancer surgery is pretty limited on the basis I’m usually asleep when it happens. I said I’d be led by him as he’s the expert, but if he cocks it up I’ll be removing him from my Christmas list. I’d really hoped that my days of going under the knife were over, at least for a few years, but it seems not. The Biopsy will be scheduled for some time in mid-October and will be done in the day unit as per usual. I should get my own single room what with being a regular customer.

My other concerns, that I eventually got to discuss, were the state of my chest and the output from my chest over the last few days! Up until last weekend I’d seemed to have got on top of my coughing and throat clearance. One HME was lasting all day and the Hands Free was proving to be a real benefit. However since the weekend I’ve been coughing more and more and instead of a nice clear mucus I’ve been producing a creamy coloured type of gunk. (I do hope you’re not eating). The Dr. is slightly concerned I’ve developed a chest infection whilst suffering from SEVERE MAN FLU last week. A chest X-Ray and a course of anti-biotics was ordered, if the X-Ray shows anything of concern then I’ll be called back in, but hopefully the drugs will do the trick.

The week wasn’t really finishing up on a very positive note. By now I had it in my mind that I’d be back to living a normal life and visits to the hospital would be once a month, in ‘n out “See you later”, some hope. But, and it’s a MASSIVE, FUCK OFF CANCER YOU BASTARD, but……………. I’m now officially a MUG! You may remember my post back in August when we were down in Porthcothan and met up with the bold and noble Sidney 

Sidney celebrated his birthday yesterday with the annual Sidney Birthday Honours Awards. Carol was awarded the title of Auntie which she got for services to stalking and wine drinking (Oh and for looking after me!) I’ve been an Uncle now for a while, but was surprised and delighted to be promoted to the level of a MUG (Mighty Uncle Group) for services to living life to the full J So, when I think I’m a bit pissed off with not being able to do all the things I want to do, and when I’m moaning about having to have another medical procedure, all I need to do is think back and realise that being a MUG is a massive honour!  

Friday was quiet as I was still feeling a bit gurgley (is that even a word?) and hadn’t had a great night’s sleep yet again. However the day was an important one in the battle against cancer as it was the MacMillan coffee and cake day.

Nino’s always has a coffee and cake morning to raise funds for MacMillan so Max and I popped down  to partake. A couple of cups of cappuccino with Max complementing his with a massive slice of Limonchello cake. Last year Nino’s raised over £1,000 for the cause and they’re hoping to top that figure this year. I bought some raffle tickets to win a £100 meal voucher and donated some more cash to come away with these three little beauties! 

This blog is probably the shortest I’ve written for some considerable time. I’m finding it hard to come up with stories at the moment and I don’t want this to turn back into a “On Monday I did this” type of blog. It may well be that I move from weekly publishing to either every two weeks or possibly every month.

Next week is going to be a big one. I’ve my first business meeting up in London for work since my Op. To say I’m nervous is an understatement, coughing an HME across a room with friends is one thing, to do it in front of people you don’t know is quite another. Still, I’ve a weekend to get through before that, Max is out tonight and Saturday so we might polish up the chandeliers if we’re not both feeling under the weather again. Then there’s the small matter of Rams taking on top of the table side Cinderford at OBR on Saturday, should be a cracking match.

As always, thanks for reading. 

To be continued (In some way, shape or form)…………..

#Shoulder2Shoulder