A trip to the surgeon

On Thursday I made a trip to the Renal Clinic to speak to the surgeon about getting a fistula placed in my arm to set me up for haemodialysis.

It started off with a visit to the ultrasound department for a scan of both of my arms. Unfortunately the results weren't good; in the words of the surgeon my ‘veins are rubbish’! Only one vein was potentially suitable and that was borderline, and given it was on my dominant arm it was immediately ruled out. So, she suggested I consider peritoneal dialysis, but having previously thought carefully about it, I told her it’s not something I want to do given the restrictions it would place upon my active lifestyle. So, I will need to have an AV graft, this obviously carries more risks, but I think the trade-off will be worth it given a standard AV fistula is off the table.

The surgeon also suggested I should be placed on the transplant list immediately, to give me the best possible chance of a transplant before I need dialysis. Unfortunately, IT issues meant she couldn’t see my medical records, so had no view of the work-up that has already been done to get me on the transplant list. Inability to share information properly seems to be a common issue in the NHS; my regular treatment is via a satellite Nephrology clinic hosted by my local NHS trust, whereas the Renal Clinic is provided by a different non-local trust (which also makes getting to the Renal Clinic a total pain). More worryingly, she didn’t even have access to the treatment provided by the NHS trust that hosts the Renal Clinic.

The upshot is that I am going on the waiting list for an AV graft and there needs to be some sort of paperwork done to get me on to the transplant list for a kidney. Apparently, I need a referral letter from my Nephrologist, but perhaps more importantly the surgical team need to be able to access it. My Nephrologist was at the Renal Clinic that morning, but she had her own list to deal with, which is separate from the surgeon’s list. I’ll be seeing her in about a month’s time, so hopefully this can all be expedited then.

This coming Tuesday I will be going back to the dialysis centre at Crawley, I’m not quite sure what for, given that I have already had an ‘education session’ there. Hopefully, it won’t just be a re-run of the same material I’ve been presented with at that clinic and at the Renal Clinic.

The surgeon also raised the issue of my weight, and that I should try to lose weight if I want to avoid any related challenges to getting a transplant. I obviously agreed with her, but made the point that this isn’t as easy done as said, and explained the efforts positive and negative I’ve already made over the last decade plus. The fact that actual medical support has been rather underwhelming, and my previous tactics for weight loss are increasingly ineffective is a stumbling block (I think there’s a whole other post here). 

Back at the beginning of my diagnosis, the original Nephrologist suggested to my (then) GP I be put on Orlestat, but the suggestion was ignored. I did get a referral to a dietitian at one point, but that was a waste of everyone’s time, when I told the surgeon the dietitian had basically told me to eat yoghurt for breakfast and printed off some generic fact sheets from the NHS website, she just laughed and said that’s ‘what they do’ and that basically dietitians are ‘still stuck in the 19th Century’. Anyway, I have emailed my GP and got an appointment to discuss what genuine medical support might be available. My experience over the last decade has left me with low expectations, the NHS talks big on obesity, but rarely seems to deliver. Maybe I’ll be pleasantly surprised, if they refer me to a dietitian again, or one of their talking shop support groups I’ll politely decline, I just don’t have the bandwidth for messing around.

And so we move on, if not necessarily forward!    

Hiatus Over

After a near three year hiatus I’ve decided to start blogging again. A lot’s happened between then and now, and some of those gaps I’ll try to fill in future posts. There was never a formal decision to stop blogging, it was just time constraints as I put my life back together post divorce (I’ve hidden away some of the posts dealing with this period as nothing good will come from raking over them).

This blog was originally intended to document my journey with Chronic Kidney Disease, so that seems a good place to start. I’ve now reached end stage and I’m working with the renal replacement team on what comes next. Next month I will be meeting the surgeon to discuss having a fistula created to facilitate dialysis, but I’ll elaborate on this in a future post. From a health perspective I’m generally well, or as well as can be expected given my prognosis. Fitness wise things are not quite so great, having managed to get down to 100kg, my weight has crept back up to 110kg over the last couple of years. I still try to keep active, but it’s a challenge balancing everything. I’m determined to get things back on track over the next few months.

From a personal relationship perspective things are good. I’ve been with my partner over three years now, we’ve just come back from a fantastic weekend away in Somerset where we were looked at engagement rings. Our relationship isn’t without its challenges, we both have lots of commitments, busy careers, our own health issues etc, but what’s great is that we really value the time we spend together, whether it’s trips to interesting places (Canterbury, East Anglia, Istanbul, Valencia, Wells etc), visiting our respective families or just chilled weekends doing dog walks and trying out recipes.

My relationship with my son remains strong, there have been some ups and downs, but he’s doing good. He’s changed schools this academic year which has recently boosted his engagement (the old school had a big reputation it sadly failed to live up to) and after a couple of years away he returned to his old rugby club last season and is really getting back into it. The situation with my daughter has been a bit more bumpy, we’ve gone through phases where our relationship gets better only for it to take a set back, but I remain immensely proud of her, despite her own challenges which disrupted her studies she did really well in her GCSEs, she’s now at college, has a steady boyfriend and is working part time.

Professionally things are solid, my position as a development team lead was made permanent and there’s a good team dynamic going on. I’ve got some pretty demanding projects in-flight which brings a certain level of stress, but they’re growing me as a leader as well as developing my technical skills. 

Outside of work I don’t get as much time as I’d like for extra-curricular activities; I did write, record and release the first episode of an audio drama on Youtube a couple of years ago, but the second episode has been pending ever since. More recently I purchased an action camera so I can record some of the cool places my partner and I visit, so I’m going to try my hand editing and uploading some of that footage in the near future. I’ve no desire to be a professional ‘content creator’, I already have a busy career, but I do like the idea of sharing the stories and places I find interesting.

At the time of my last post I’d recently moved into my new flat and renovations were underway, barring a few snags they are pretty much all done now. I’ve almost entirely renovated the place and I’ve done a lot of the work myself, with some help from my partner and my parents. It’s been tough but learning new or enhanced DIY skills has been really rewarding; not forgetting that being ‘handy’ has saved me a lot of money I can put to other things. 

 

Anyway, I think that’s enough for today.

Steady as she goes

So, I'm writing this having recently returned from a short break in Turkey with my son, and in general things are looking pretty good.

I completed on my flat purchase in June. I'm now fully moved in and renovations are in progress, it was always a fixer upper, but I'm enjoying the chance to put my mark on the place. I got my deposit back on the old flat and I was even able to sell on the washing machine and fridge that I had to provide for myself (there was a hilarious moment when a prospective new tenant was viewing the flat and the agent tried to spin it as a special feature that the landlord was providing the built in hob and cooker but the tenant had to provide the fridge and washing machine). I heard they were putting the rent up to £1,100 a month which is shocking for such a pokey little place with rather limited appeal.

Career wise my secondment as team leader has been extended whilst they sort out making it permanent, I'm still not sure what that means pay wise, but I'm guessing I will keep the higher duty pay I got when I moved up. I'm settling in to the role, and I've decided not to pursue my interest in Data Architecture as it's not the right move for me, there's a possibility I may look at product management in the future, but for now I'm happy.

My health and fitness is holding up pretty well, I'm hovering around the 97-98kg mark depending on how well I eat in any given week but I have plans for improvement. With the moving and the holiday I haven't run or been to the gym as much I'd like recently but I'm making an effort to get back into it. 

I've been sent an invite for renal replacement education at St Helier Hospital next month to walk me through the process of transplantation, it's still early days, but they're getting me ready for the journey. Apparently I missed an appointment in July, primarily because I didn't know anything about it. I've already had a session with the dialysis clinic down in Crawley, but ideally I'd want to do home dialysis when the time comes.

In my last post I mentioned how I'd met someone through dating and there were signs it might develop into something more. Well, I'm glad to say it has, we've built some momentum in our relationship and it's been fantastic sharing intimacy and trust with someone again. Forming a new relationship in your 40's is different, we're fully formed as individuals in a way we wouldn't have been had we met earlier, but I think we're both optimistic about a long-term future together.

My relationship with my son continues to go well, there's been a slight improvement in my relationship with my daughter. Last month she came to my birthday dinner with my parents and my girlfriend which was a positive development. I've started looking for other ways in which I can invite her into my life without putting too much pressure on her. 

Overall the future looks bright right now.

August Update

It’s been a while since my last post, and quite a lot has happened in between, so I’m going to break it up into three posts, one for each month.

After coming back from my trip up North to see family, I had a busy week at work, where I finally started to get my head around my new role. Then I went off to Spain with my son for a week and for then he stayed with me for most of the following week as I saw out the second week of annual leave.

I had my annual medical with the practice nurse on 9th August, everything was okay. Obviously my kidney function is still shit, but it’s a stable kind of shit, and my blood pressure was good which means the Bisoprolol Fumarate the Nephrologist added is doing its job (I found out it’s a beta blocker, which I hadn't realised, and was a little surprised by given my previous resting pulse was 50-60 bpm). I was 3kg lighter than last year, although my good cholesterol had gone down a little and my bad cholesterol had gone up a little. As a random bonus she offered me a pneumonia vaccine, as I’m apparently eligible for one, and I figured given the winter of discontent the UK is facing I’d take it!

I explained to the nurse how my weight loss has plateaued, probably due to my diet being too heavy on carbs, and my concern about how much protein I should be eating without overloading my kidney. She made an appointment with the practice dietician for September. I’m not holding out for that much as previous referrals for weight management have gone nowhere;  I’m pretty sure that shifting from carbs to protein will improve my fitness regime and help me lose weight, but I don’t want to wreck my kidneys in the process. 

Like the physio I saw a while back (which went nowhere) the nurse suggested I protect my knees by swimming rather than jogging, but the reality is swimming doesn’t have the same impact (no pun intended). I realised I hadn’t run a single 5k in 2022, the furthest I’ve managed being 3k, so I decided to do the whole couch to 5k programme again to rebuild stamina. The early weeks were pretty straightforward given I’m not starting from scratch, but it did set up the pattern I needed. I also bought a new pair of running trainers from Decathlon, their unpronounceable own brand, to replace my worn out Nike. Decent trainers and strapping being the key to injury prevention.

The week in Spain was relaxing, the hotel in Salou was nice, there was a decent choice of food and the facilities were good, although it is noticeable that things are more expensive than they used to be (partly inflation and partly the shite exchange rate). Being up on the Costa Dourada the ubiquitous local beer was Estrella Damm, but I made an effort to try as many different beers as I could (it’s a hard life sometimes) and actually became pretty enamoured with Lemon Damm, a kind of shandy beer which went down a treat of a baking hot afternoon.

We spent a few days on excursions, one to the local waterpark, one to the nearest city of Tarragona, and one up to Barcelona. The plan was to go to Tarragona on market day, to see if we could find any knock off football kits, as it was, the clothing market was pretty meh! But the indoor food market was stunning, which was just as well, as we had to hide inside for an hour to avoid a massive thunderstorm.

Once the storm cleared we took a walk down Rambla Nova to find the Roman amphitheatre. A little disappointingly we couldn't go inside as I forgot to bring a payment card with me, and the ticket office wouldn't accept cash, fortunately most of the site is visible from the park that surrounds the ruins. As we were heading back into town we came across a parade for a local festival, we couldn't really avoid it due to the sounds of the marching band and a man at the front firing a small cannon every twenty metres! After stopping for lunch I took a quick look at the cathedral, but I didn’t get chance to go around as my son was starting to get ratty from all the walking and wanted to go back to the hotel.

The following day we took a coach trip up to Barcelona; I’ve been a couple of times before, so had already visited the big attractions like Park Guell, Las Ramblas and Sagrada Familia. I had hoped to go to Sagrada Familia again, but there wasn’t time on this excursion. In the afternoon we visited Camp Nou to do a tour of the football stadium. I’d last visited about twenty years earlier, during the off season, that time it was less busy and also a lot less commercialised, but my son really enjoyed the experience. 

The final week of my leave, when we got back to England was pretty chilled. The weather was decent so we did a bit of swimming and played some football in the park. For the final week of his school holidays my son went off to Turkey with my ex and his sister and I headed back to work.

Ticking Over

Things have been going pretty well lately, I went up north for a week with my son and it was nice to catch up with family. As predicted I ate too many pies and made several trips to the club with my Dad and brother, fortunately I also made sure to get in a couple of decent walks each day to keep on top of things.

I had a bit of shocker with my car, my Dad took it to the mechanic he uses to see if he could find why it has a habit of cutting out at a stop. He did some jiggery pokery with the choke, but he also informed us that I had no brake lights as the brake light switch had failed. Because it was the switch and not the lights themselves that failed there was no warning message on the dashboard, so it appears I drove the best part of 250 miles with no brake lights! All sorted now.

At work I’m still getting into my new job, I’m trying to drum up work so that all my guys are fully utilised. It will take a little while as my brief is a little bit vague, but I’m picking up bits of work that other people have started. I’m also about to run a wellbeing survey wearing my other hat as an employee engagement champion, although August is not necessarily the best time to do this.

The house sale still hasn’t gone through, mainly due to people twatting around lower down the chain, fortunately I’m not getting involved in any of it as I’m not really part of the chain. Despite this my ex seems to be less shitty with me, which I’m pretty sure is because she’s found a way to resume hookups with the secret boyfriend. Since I’ve given her my set of house keys I’m pretty much out of the scene and that’s the way I plan to keep it.

I’ve got one week of work left before my summer holidays. I’ll be going to Spain with my son for the first week, and then the second week we’ll need to find some cost effective things closer to home to fill the time. Things seem to be getting better with my daughter too, so hopefully I’ll get to spend some more time with her over the rest of the summer. 

When sports coaches go bad

No posts for ages and then and usually long and serious one today! In my last post, almost a couple of months ago now, I wrote about my experiences at a youth rugby tournament where a game went horribly wrong due to the referee probably being pissed. Very recently I went to a youth football game which went wrong because the referee was probably a cheat, I use word referee under caveat as the real referee didn’t actually show up, instead we got a very unsuitable stand in.

So, it's 09.30 on a Saturday morning and I’m stood with a group of other parents in a public park in another part of Surrey waiting for my son’s under-10s match to kick off when we’re informed the neutral referee (suitable referee to use the official terminology) hasn’t showed up. As it’s an away fixture the opposition are supposed to arrange the referee, and up steps the opposition coach to do the job. Big mistake! The same rule I apply to youth rugby tournaments applies to all other forms of youth sport, if you don’t have a neutral referee there is a much higher risk of irregular officiating.

Now, it might be the opposition coach, let’s call him ‘Mr 0’, thought he had the skills to referee a football match, but in my opinion it quickly became clear he couldn't act as a neutral referee in a match where he was de facto not neutral, besides as the sole coach of the opposition under 10s team, he had an entirely different, important and highly partisan job to be doing at the same time.

The game starts and every few minutes he makes what I’d describe as ‘coaching interventions’, basically he’s decided he doesn’t like the way something is being done, so he stops the game to offer guidance. It is true that ‘suitable referees' do give instructions to players, they may ask them to retake a throw in, or halt a play or some other thing, but this was persistent, frequent and erratic disruption and it was mainly to the detriment of my son’s team. Referees usually facilitate games, this was the complete opposite, he refused to allow the game to flow, especially when my son’s team were in possession, finding a succession of reasons to break momentum. We often have teenage referees at youth matches and I find they are a million times more competent than what I witnessed on this particular morning.

Mr 0’s actions obviously started to cause a bit of disgruntlement amongst visiting parents on the sides, I imagine the home parents didn’t find it a bundle of laughs, but at least they were getting what upside there was from the shitshow. It didn’t take him too long to realise his erratic behaviour had been noticed, so during one interruption he loudly enunciated ‘both teams are doing it’, more for the benefit of spectators than players. Unfortunately, he didn’t go on to explain why one side in particular was bearing the brunt.

I think referees, and coaches for that matter, do a difficult job. I’ve never openly challenged a referee or coach doing their work and I’ve certainly never been abusive. I’m certainly not above criticising or discussing mistakes though, I believe in fair comment. Constructive criticism is a valuable part of my day job and there are times I’ve been subject to harsh criticism, during my days in local politics there were times when it went well beyond that. However, the level of what I’d politely call ‘gamesmanship’ from Mr 0 certainly irked me and there was an incident in the first half which, for me personally, tipped into brazen cheating.

A player from my son’s team committed a foul on an opposition player just inside his own half, close in to the touchline. It was pretty much in front of where I was standing, so I have no complaints about it. It wasn’t a serious foul and the opposition player retained possession and was actually in a position to make a break, Mr 0 made a reasonable decision and called ‘play on’ and ‘advantage’. The opposition players worked the ball down to my son’s goal (he was in goal), putting together a decent attacking move that had the defenders on the back foot. It was a good example of the advantage law in action. As it happened my son’s team did eventually deal with the attack, regained possession via a goal kick and began working their way out from their own area.

At this point Mr 0 blew up again, to the seeming surprise of both sides, and whilst I don’t recollect the precise words, he said something acknowledging that advantage had been played but he’d now changed his mind and wanted to give the freekick too. I could see the confusion from both sets of players, they had all done what he said, and I'm not sure they understood he was reversing his earlier decision given the time he'd allowed for the advantage to play out and more crucially he had allowed play to restart. He took the ball off my son’s team and he marched back to the spot of the foul, close to the intersection of the halfway and touch line. The freekick itself was a nothing event, it was too far away to threaten the goal and the team dealt with it comfortably, the advantage played was the genuinely advantageous outcome for the opposition. The freekick was just cheating for the sake of it; a filthy trick to play on ten-year old kids.   

This was too much for one of the other parents, I will call him ‘D’. D complained loudly to Mr 0 about why we couldn’t have a real referee (I don’t remember the exact words, but D just wanted an improvement in what was a shocking performance). As I’ve already made clear, I personally wouldn’t have done this, but it wasn’t abusive and for me the benefit of the doubt for Mr 0 had gone out the window with that last sleazy trick. I think it was highly improper to reverse an advantage after it had been played out, but it was actually against the laws of the game to do so after play had restarted. 

Mr 0 marched over to the respect line, the rope set back from the touchline behind which spectators stand. He got right up into D’s face; snarling, aggressive and threatening, and accusing him of setting a bad example. There was no hint of irony about who was actually setting the bad example. I was worried it might escalate so I walked over to the D and encouraged him to move away further behind the respect line.

The shithouse behaviour seemed to taper off a little in the second half, unfortunately a lot of the damage had already been done. My son’s team ended up losing 3-0. I have no complaints about the goals, they were all fair, and the players on the other team behaved impeccably. How much Mr 0’s gamesmanship contributed to the loss is debatable. I don't believe it was a fair game, my son’s team never really got into the match, the erratic and disruptive officiating absolutely played a part in that. Being kids they’ve no real frame of reference for dealing with this kind of thing, how do you coach for a cheating pseudo-referee who shouldn’t be there in the first place? Perhaps there is a life lesson for them about some of the dubious characters you meet in the real world?

At the end of the match I noticed D and Mr 0 had further words, but I was too far away to hear them. D was following some of the kids off the pitch in the direction of a neighbouring play area they’d made a dash for. His route took him within about 20 metres of where Mr 0 was packing up. I was at the other end of the pitch taking a more circuitous route, but I could see they were well apart from each other and by the time I made it round to the play area D was already there and seemed unperturbed about whatever had been said.

As we walking back to the car my son said to me ‘that referee was an idiot’, and all I could say back to him without using stronger language I might use in front of an adult was ‘yes he was an idiot, but he wasn’t really the referee’. I had to explain to my son that you still need to be respectful even if the referee isn’t a real referee, but just some idiot who got themselves into a situation they couldn’t cope with because they were trying to be helpful.

After much thought about it over the subsequent weekend I raised an official complaint via the club about Mr 0’s behaviour. I am immensely grateful for the hard work coaches and referees do, but there are serious safeguarding responsibilities involved. Mr 0 may have had good intentions; he may have felt he was doing the right thing but the way he behaved was totally wrong. I’ve made it clear to my son’s coach on the day that I don’t hold him responsible, he acted in good faith and couldn’t have foreseen Mr 0’s behaviour. Some people might think I should just let it slide, but one thing I’ve learned is when everybody lets poor behaviour slide it only ever gets worse.

The FA have the ‘Respect’ agenda, which I think is a good thing, but I’m not entirely sure how deep and consistent it is in practice. If my days in local politics taught me anything it is that authorities are much better at signalling their virtues than owning them. I genuinely believe in the concept of safeguarding; I entrust the safety of my children to certain people like sports coaches and referees, drama club teachers, guide/scout leaders, school teachers etc. Maybe I am overreacting? Maybe this is just some bloke being a bit of dick, someone overwhelmed by what they’ve taken on, or maybe someone for whom the desire to win overrode the need for personal integrity? But my honest opinion is there’s a little red flag in there i.e. the narcissistic need to constantly disrupt a children’s football match and the explosive response to people criticising cheating, and organisations can be very good at ignoring such red flags if allowed to.

It's only been a few days, so I haven’t heard anything yet. I know I have more to write about this, but as always it is finding the time.

The strange case of the drunken rugby ref

I experienced some rather interesting events on Friday evening. I went to watch my son play in an under-10s rugby tournament in neighbouring South London. His club sent a squad of two teams to compete, and although we've been to many such events, this was the first I'd been to on a Friday evening, also the first since the pandemic. Last season was fractured, so there weren't any tournaments, and the players are now a little bit behind in their progression along the contact pathway. As a result, the first games were a little scratchy as they got used to playing against other clubs again. It's also fair to say some the refereeing was a little patchy as coaches who hadn't controlled matches for some time adjusted to the new age groups rules. But it got better as everyone got back into the swing.

Where things got interesting was at the end of the evening after my son had finished; we went over to watch the other team from the club play their last match. They were playing a team from the host club, being refereed by a coach also from the host club. I've seen many games of youth rugby union over the years, going back before my son was even born, but this was the most ridiculous spectacle I've ever seen. It's true I'm not entirely neutral here, this was my son's club playing, but the referee completely lost control of the game. By the second half he was no longer bothering to call the tackles when his team were in possession, causing the contact area to become a melee. Instead of the tackled player presenting the ball properly and the defensive team resetting in an onside position the contact started to resemble a kind of rolling maul with players joining from all directions. Crucially he was also failing to deal with foul play, which meant the kids were starting to take matters into their own hands, a pivotal moment coming when a player from my son's club decided to punch an opposition player who had just pole axed him with a reckless high tackle ignored by the increasingly indifferent referee.

I don't wish to justify the indiscipline from the players, but they are kids, and there is a serious responsibility on the referee to stay in control. The coaches from my son's team, some of whom are highly experienced referees, were trying their best to encourage the referee to pay attention to the rules, to start calling the tackles again and take control. They weren't abusive, but they were trying to remind him of the rules, and to keep everyone safe. Instead he appeared increasingly perplexed and distanced from the unfolding chaos, he repeatedly glanced in the direction of his coaching colleagues, shrugging his shoulders as if he wasn't sure what to do whenever he was challenged to follow the game. It was also clear some of his coaching colleagues were aware he was struggling, but they appeared conflicted over whether to intervene.

Generally, I'm not one for undermining referees, but this was a safeguarding risk, the referee was no longer performing his function. If my son had been playing, I would have removed him from the game for his own safety. There could be many reasons for the loss of control; tiredness may have caused him to lose interest, he may have been inexperienced or poorly briefed on the age group match rules, there may have been some subconscious bias towards foul play by kids he knows, or maybe he simply struggled to delineate the role of coach from referee. However, I have a strong suspicion that he was under the influence of alcohol, and that contributed to his loss of concentration. Why? Well, as the game ended one of the opposition coaches overheard me saying the referee should have been replaced, and came over to remonstrate, loud and lairy as he was, he made no sense as he was completely pissed. He swayed around in front of me with an empty pint glass in his hand, till another parent suggested he might want to go away and calm down. It would be untrue to suggest all the host coaches were pissed, that was definitely not the case, but I'm not the only person who was present with suspicions about the flailing referee's sobriety.

I know my son's club is taking action in regards ill-discipline, and I understand there will be a letter sent to the host club about the incident, but I suspect the popular speculation about the referee's sobriety may be passed over in the interests of inter-club relations. By coincidence we met the same club at a different event yesterday, fortunately the incompetent was not required to referee, and the coach who had swayed drunkenly in front of me appeared sober, though our paths never really crossed (I doubt he'd remember me anyway). What the whole thing has impressed on me is that these tournaments (or festivals as they are sometimes called) work best when neutral referees are in place and everyone understands the rules. It may also be the case that holding them on a Friday evening rather than the more typical Sunday morning is a bad incentive for some coaches.