I Want To Ride My Bicycle ……. I Want To Ride It Where I Like

The weekend didn’t really start as planned. I had a really poor night with sleep being difficult due to problems I was having breathing. I eventually removed the HME filter from the Lary tube to try and get a decent airway (Note to other Lary patients – THIS IS NOT RECOMMENDED!) The plan had been to go over to Nino’s to celebrate their 4^th birthday in Pangbourne, and probably have lunch there too. However I was just not up for it. By 11am I’d been through two T-Shirts and 3 HME filters, I was having to clear the Lary tube every 20 minutes or so. I was feeling well and truly pissed off with things. In the end, we did pop into Pangbourne very briefly and had a slice of pizza with the two Nino’s and Ms Nino. But even then, I could feel my throat contracting and wanting to cough so we left after about 10 minutes.

On Saturday night we were due to meet up with a mate that I hadn’t seen for possibly 20+ Years. Tim had recently come back to the UK after spending time in South Africa and more recently the Far East, he and his wife are renting a property within spitting distance of us, so we planned to meet up in a local pub for a couple of pints and a catch up. I’m afraid I had to bail out as I just wasn’t feeling up to going out and wouldn’t have been able to talk properly without the need to cough and clear Lary out. Tim will be back some time in October, so by then I should be far fitter and more up for a gallon of ale!

Tim and I first met when we were both working for Security Pacific, an American bank who had their UK Head Office along the Kings Road in Reading. Tim was a talented sports man, excelling at cricket and a fairly handy rugby player too. In those days Sec Pac had an annual “Head Office” vs “Braches” match at rugby, cricket and football. The cricket and football matches were usually good natured affairs, the rugby was banned after two fixtures by the MD as he didn’t think employees trying to knock each others blocks off was good for staff morale.

We had a fairly decent cricket team as a company and played against various other local companies in friendly matches in the evening after the working day was over. One of the regulars and stars of the team was a chap called Martin Smith who sadly died in a car accident. He played cricket for Woodcote Cricket Club who organised a memorial “Sixes” tournament in Martin’s memory. The Sec Pac team were invited along to take part. Tim was a key member of that team as a big hitter and decent enough bowler. He showed up the morning of the match and could hardly walk due to a pulled muscle. The other teams were gallant enough to let Tim bat with the aid of a runner, namely me, he took great delight in hitting the ball all over the park. Woodcote is a pretty large ground, and my abiding memory of the day was running numerous three’s and being totally knackered whilst Tim leaned on his bat smiling!

I’m looking forward to catching up and having a good chat about old times, but I need to be well enough to do the evening justice.

Sunday was a far more positive day. As the sun was shining I decided to make the most of it by going for a cycle in the morning. Not too far, probably about 10km in an hour, so a nice gentle pace, but I can feel the heart beating a bit quicker which is the whole point of exercise for me at the moment. One after effect of the operation that I hadn’t thought of is that my neck area has changed shape quite dramatically. My helmet just about fits at the moment, and should be ok once the throat swelling has gone down but is quite tight and constrictive at the moment. I’m loath to go and by a new helmet with longer straps at the moment, but equally I won’t cycle without wearing one. I suppose like most of us, when I was a kid I used to cycle all over the place, I never wore a helmet, reflective jacket or any other safety equipment (apart from bicycle clips when I rode to school!). The roads I suppose weren’t anywhere near as busy as they are these days and perhaps drivers had a little bit more respect for cyclists than they do now. I spoke via FB to a friend who’s currently down in the Padstow area and had cycled the Camel Trail with his family. His advice is to make sure you pre-book your bikes, so we’ll check the forecast and try to pick a half decent day. I’m quite looking forward to a gentle ride along the estuary, and there are watering holes along the route too. I know I’ve said this before, but I do really want to start cycling more often. My legs might be knackered, I’m not very fit, I’m getting old, but cycling is something I reckon I can do and can only help my physical and mental recovery.

I decided to do a full roast dinner for the first time since before I was cut to shreds. It was whilst stuffing the chicken with a mixture of herbs that I had a very strange sensation………. I could vaguely smell the thyme and basil I was using. I’d been told that it was unlikely I’d ever get me sense of smell back again so to just get a slight whiff was great. I spent the rest of the afternoon sniffing my fingers whilst watching the English Roses beating Italy in the Womans RWC. Regular readers of the blog will know how much I enjoy cooking. When I had the Chemo and RT in 2016 I lost my sense of taste completely and struggled to eat properly until it slowly returned. Losing smell isn’t quite as tough, but there are times when I’m cooking that I could really do with knowing if something was catching or if I needed to add a little bit extra of something. If this little gain is showing that possibly the sense is coming back then I’ll be a happy bunny.

There was one final small win on Sunday. I decided to wear a base plate rather than my Lary tube from when I got up in the morning, and wore it the whole day until bed time. Putting the tube back in to sleep wasn’t a problem, albeit I needed a little bit of lube to slide it in. It’s so much easier to speak with just the base plate, it’s also more comfortable and less invasive. On Saturday I was replacing HME filters like they were going out of fashion. On Sunday I went through the whole day with just the one filter 😊

Looking at the weekend in the round I reckon it was better than the average bear. Yes, it would have been good to go out on Saturday night, but there will be other nights. Teddies got thrown for no apparent reason on Saturday, but they bounced and weren’t broken and lessons were learnt. Sunday was a step in the right direction, a small step, but still a forward step. One thing I did learn though was that if you have a knackered shoulder then it’s a really stupid thing to try and overarm bowl a tennis ball – OUCH!!!!!!

Monday started with my now usual trip to Mad Hatters for a coffee, but this time instead of walking up to the village I incorporated the caffeine stop into my cycle route. I think the staff are getting used to me now, even if they may have been a bit surprised to see me turning up wearing shorts, tight shirt and a helmet!

I received a mail back from the CNS Team at RBH regarding my concerns about the solid lumps on my chin, it seems as if it’s quite common and nothing to worry about. If I am concerned they suggested contacting my GP, and wait 8 weeks for an appointment.

We’ve got the house pretty much to ourselves again this week. Max got back from Hamburg last Friday, worked Saturday, Sunday and Monday afternoon and promptly disappeared to Wales until Wednesday night with Laura. She’ll also be coming down to Cornwall with us next week for part of the holiday which will mean that Max won’t have to hang out with the “Oldies” for the whole week. Maybe we’ll get a bit of time to ourselves too.

We’re hoping to go abroad either towards the end of September or early October so I thought I’d better look at travel insurance bearing in mind my latest trip to the hospital. When I tried to do this task originally I called up my then travel insurers, Lloyds, who quoted over £600 for a single 10 day trip to Corfu, they just weren’t interested in covering anyone who mentioned cancer. I eventually insured via a company called “Insurewith” who specialise in covering pre-existing medical conditions, they charged me less the £100.00 for the Corfu trip. I’ve since used Saga who were even cheaper when we went to the Canaries and have come in at £122.00 for a 10 day trip later this year, which considering the surgery I’ve had and the potential for something to go wrong I don’t think is too bad at all.

I spent an hour or so at OBR on Monday evening at a meeting to discuss the various social media accounts the club runs. For my sins I’m the webmaster of the main site for the Rams http://www.pitchero.com/clubs/redingensians I also help to run the FB  https://www.facebook.com/Redingensians/ and the Twitter accounts too https://twitter.com/Rams_RFC The point of the meeting was to see how we can make the most of the platforms we use and to increase our audience. Any “Follows” or “Likes” would be appreciated. As a start off it served its purpose, with more work to be done prior to the start of the season. Whilst at the club I was having a chat with the 1^st XV Head Coach who I’ve known for a fair few years, indeed going back to the days when he was still a player for the club 

 He was asking how I was getting on and the conversation eventually moved on to how I can actually speak now. I tried my best to explain how the air is diverted up through my valve which in turn is turned into noises but I’m aware that this isn’t really a good explanation. For the blog after I’ve got back from Cornwall I’ll do some real research and find an “Idiots Guide” of how to talk with a Lary, if nothing else it’ll help me understand, at the moment I’m still of the opinion that its some form of Cat Fagg Black Magic!

Tuesday’s pattern followed the norm now. Up, breakfast, bit of web surfing and then off for a bike ride with a coffee break halfway through. I managed to miss the (Daily) Amazon delivery whilst I was out and eventually found the package behind the dustbin. I’m an honorary “Uncle Paul” to a friend on FB who lives down near to Portcothan, and we’ll hopefully be meeting up for the first time next week. So I thought I should buy Sydney a present to take down with me – 

Sidders is a rather handsome Jack Russell in case you were concerned as to my choice of gift. He has the wonderful gift of cheering all his honorary Aunts, Uncles, HAGs etc up with his antics on the various North Cornwall beaches.

There was a pleasant interlude to the day with a visitor from OBR arriving for a chinwag and cup of tea for an hour or so. I’m very conscious that if I’m at home all day by myself that I may not actually use my voice, so having someone to talk to is excellent exercise and I only really needed to clear my throat out the one time which I recon is an improvement. Matt showed me the draft of the new Rams Seasons Guide which features a number of my photos which is always pleasing to see. This year they’re credited to s2s Photography rather than to Paul Clark. Again, when I’m back from Cornwall I’m going to get some polo shirts printed up with the logo. It may seem a tad egotistical but I’m quite proud of the shots I’m taking and editing at the moment. It’ll never pay the mortgage, but it gives me a bit of pleasure.

I had a conversation with Don (fellow Lary) over text during the day, we’ve had to cancel the coffee planned for Wednesday, but will probably meet up later in the month. It’s comforting being able to talk to someone who’s been through the same procedure as me and so recently. I was asking him about ordering supplies and specifically the way his valve is behaving. Mine has started to spin round like Linda Blair in the Exorcist, but apparently so is Don’s and he confirmed with his speech therapist that this is normal. It should last somewhere in the region of three to six months and can be replaced quite easily, but I must admit that due to the position of the valve I’m a tad concerned at the first replacement. Don’s started his sessions of Chemo and RT this week and I hope I was able to give him a degree of comfort as to what he’ll be facing over the next few weeks. It won’t be easy for him, but I get the feeling he’s a pretty strong character and will get through it alright with some support and care. Coincidentally I received my first monthly call from Countrywide, the company who supply the bits and pieces I use daily on Tuesday afternoon to take my order for the next month. I was really impressed that a) they could understand me over the telephone and b) that they knew what to suggest I might need instrad of just what was on my last prescription. For instance, I was supplied a shed load of bibs, of which I’ve used two, so we haven’t bothered with any more of those, but she did suggest adding on barrier cream and adhesive removal cream to help cleaning up the wound, especially as I’m now using the base plates on a daily basis.

Wednesday was pretty boring, a quick trip into Reading to see if I could get Carol a birthday present (Failed miserably – what do you get the woman who’s got nothing?). A couple of hours spent cleaning up the membership database of the Rams website as it had been hit by a load of “Bot” memberships somehow or another. Other than that I relaxed for the day as I was feeling a bit jaded for some reason. I was also getting a little bit nervous about my meeting at RBH on Thursday. It’ll  be the first time I’ve seen the old team since the operation and I’m not really sure what to expect. I’m guessing that one of them will decide it’s still a good idea to stick a camera up my nose. I’m hoping I’ll see the speech therapist just to confirm that my valve is still secure, and I’d like to see one of the CNS Nurses just to discuss some concerns I’ve got on my mind, but we’ll see how busy it is.

The highlight of the day was probably when Penny bought in a very live mouse to play with, it was last seen running down the cabling hole behind the fire place (The mouse, not Penny). This ensured that the stupid cat spent the rest of the night looking at the small hole intently hoping that the mouse would be stupid enough to stick its head back out.

Earlier in the week I was having a chat with a friend when the word “Flaccidity” was brought up (In an entirely innocent manner) and it reminded me of years ago working at Avco Trust in the Timeshare Finance Dept (It was every bit as crap as it sounds). To enlighten a very boring job we came up with the idea of the “Phrase that pays” which involved getting either a phrase or a word into a conversation over the phone with a customer. The one I remember vividly was Reindeer. I can’t quite recall who actually won, but I think it was probably Jools. The conversation went something like this :

Jools > Good evening Mr Smith, it Jools from Avco here, how are you today?
Mr Smith > I’m good thanks.

Jools > And what’s the weather been like down in Southampton?
Mr Smith > It was a lovely day thanks, what about with you in Reading?

Jools > It’s nice now, but it rained here earlier…………

Cue the whole Dept. rolling on the floor with tears of laughter rolling down their faces!

So, I’ve now been challenged to get “Flaccidity” into a conversation. As I was having my follow up meeting at the RBH on Thursday I thought that would be an ideal chance. “I’m having trouble inserting Lary into my hole due to his flaccidity and I have to use lots of lube”

Thursday was a massive day for so many people with A Level results released across England. I saw a very good post on Facebook from a friend.

“A level results day. As long as you've honestly tried your best, that's all that can be asked for. 
You are all beautiful young adults with a full and exciting life ahead of you. Be yourselves, you don't have to change who you are in order to fit in the box others have created for you. 
Live life to the full remembering just one thing- do no harm to others” 

There is so much pressure on young people today, they’ll feel they failed if they don’t do well at their exams, forgetting that life is the long game. Happily Max, at the second attempt which proves my point, managed to get the grades he needs to get the TA’s role that he wants for 12 months prior to doing a bit of travelling. I sometimes wish I’d taken that option too all those years ago, a bit late now I guess. Max worked his backside off this last 18 months after making a bit of a mess of things first time off. But he’s grown up a lot in that time, partly due I think to having to watch his dad go through a rough time.

I rocked up to RBH about 40 minutes before my appointment was due, quick coffee, walk around the block and then settled down to see how late it would be this month. After 30 minutes of waiting I was called in to see Cool Dude who was the one to break the news that the cancer was back again. He seemed quite happy with my progress and confirmed that the swelling around my throat is nothing to worry about as I’m still in the very early days of recovery. We also discussed the movement problems in my shoulder and he’s of the opinion that it down mainly to bruised nerves. Exercise and physio will improve the joint and nerve damage in time. I was hoping to have had my last “Up the nose and down the throat” examination, but oh no, he insisted on taking some photos for old time’s sake. He reiterated three or four times that we’re still at an early stage of recovery and I shouldn’t try to run before I can walk. Heavy lifting or heavy exercise are strictly out of the question for the time being. His eyebrows did a bit of a “Roger Moore” when I mentioned that I’m planning on going back to work next month, but hey ho!

It was then off to talk through my progress with the Speech Therapists. They were also happy with my progress and the care I’m taking of the stoma. I’d mentioned in a previous blog about the possibility of using a hands free system to allow me to speak. There are two types which we played about with for 20 minutes or so, and the results were, to me, amazing! Not having to put my hand up to push in the valve made a huge difference, especially to my confidence. One of the systems worked better than the other, however they didn’t have any in stock to give to me, so an order has been put in. I’ve brought the other system home with me to trial out over the next few days to see if I can get on with it. It might only be a small step, but for me it feels like a small step back to normality. I didn’t manage to get flaccidity into the conversation, but I did manage a flaccid! When I was asking how the magic hands free kit actually worked Caroline explained that a flap is either open of closed depending on my breathing, when it’s in a closed position it flaps downwards, in a flaccid position is how I described it. I thought I did rather well not to laugh.

The busy Thursday continued with an early visit to OBR to take the head and shoulder squad shots of the Senior Squad to use of social media posts throughout the season. 36 players / support staff knocked off in one evening, hopefully the remainder will be done in the next couple of weeks. I was very pleased to be told that a good friend has sponsored the lunch at the club on 9^th September against London Irish Wild Geese. He’s sponsored the match in favour of Berkshire Cancer Centre, the charity I’ve been helping to raise funds for under the Shoulder2Shoulder banner. The pre-match lunches are usually very entertaining affairs, so I’m looking forward to this one. I’ve been in contact with the fundraising manager at RBH to see if anyone from the charity would like to come along to the match as a guest and give a short speech about the work they do and where the funds raised go to. Hopefully someone will be able to attend.

Friday was a day of cooking, packing, charging and trying to work out how much medical supplies I’m going to need to take away for a week. (A lot more than I originally though it would seem) Despite the fact that we’re not camping this year I still suspect we’ll be rammed in the car tomorrow. I really don’t want to have to put the roof box on, but knowing that Carol will probably try and pack the kitchen sink………

We’ll be leaving at silly o’clock on Saturday morning with a view to beating the traffic and being in Padstow for breakfast by 8am. The forecast for the week doesn’t look too bad, it won’t be the 30 degrees we’d be looking at in the Canaries, but there doesn’t seem to be too much rain forecast. So a week of walking the cliffs ,cycling the paths, playing on the beach and eating for the UK beckons. There will be a blog at the end of next week, and if I can get WiFi I’d imagine there will be the traditional holiday “Stalker” pics posted up on FB too. After that I’m not sure if I’ll continue the weekly blogging, I’ll decide over the next 10 days or so.

As always, thanks for reading.

To be continued……….

#Shoulder2Shoulder