My Battle with Cancer

My first blog of 2022 and its been a while, to be totally honest it took me a while to get over the mishaps of July 2021. To go from completing 100km to barely walking upstairs certainly messed with my head, the recovery was harder than recovering from the original laryngectomy as it was totally unexpected. Now in February I feel I am somewhere close to the fitness level I was at pre-Ultra, and that is thanks to my friends at Hereford Tri Club and there support, also Jonty for his patience in rebuilding my upper body strength.

So what’s the plan for 2022, we’ll after a brutal 2021 I thought I would have an easier year, with a half marathon, 3 triathlons, a half ironman and a 50k Ultra to round it off.

Since being diagnosed with throat cancer all I have been told is what I can’t do and how I need to be careful – what has driven me is setting goals which prove that the illness doesn’t win. I am convinced now more than ever that a positive attitude and  exercise is the greatest weapon.

So entering triathlons means I have to learn to swim, the one thing I was told I would never do again – bollocks 🖕 So it came to pass on November 23rd (3 year anniversary of finishing radiotherapy) that  I travelled to Royal Exeter Hospital with Ann and Gabby to be fitted with my rather wonderful special snorkel device. It wouldn’t be me if that didn’t have its own drama, got to the M4 at Newport- CLOSED no warning so a very slow detour around the sites of Newport in a traffic nightmare. Eventually got to Exeter 5 mins late, how I didn’t get a ticket is beyond me, anyway I found the relevant department and was introduced to the wonderful Clare and Zoe who are nurse specialists and are quite frankly wonderful.

The first part of the session was calming Ann down, and then teaching me how too anesthetise my trachea, thus enabling me to insert an 8cm long cuffed trachy tube into the hole in my neck to which the snorkel would be attached. Once stuffed in the hole I was shown how to inflate the cuff on the tube so that it grips my trachea and prevents water from getting in my lungs. Next was the fitting of the snorkel  and getting in the pool, Gabby as usual was a star as my swimming buddy with Ann responsible for the videos.

To say I was pooing myself would be an understatement, it was the scariest and most exhilarating thing I have ever done. People ask what’s it like, well here goes when you put your head in the water you feel and hear the water entering the hole in the neck and then it goes quiet. Then the next thing is when you swim the water goes up your nose and in your mouth, as automatically you try and breath and swim how you used to, unfortunately with a laryngectomy you can’t blow out of your nose or your mouth so it has a rather troubling effect. With no sphincter at the top of my food pipe the water goes straight into my stomach and hence my bladder fills rather quickly, good job the water really doesn’t turn purple 😉

Anyway mission accomplished I can swim again, with the equipment I also got a device for swimming under water – really cool it goes from my tube in my neck to my mouth truly awesome, but what makes it even more special is that when I wear it I can smell again for the first time in 3 years. The first thing I smelt was Ann’s perfume for the first time in 3 years and then the chlorine – WOW so unexpected and truly overwhelming 😃

Now the fun begins with training for the events, running is as awesome and head clearing as ever, cycling about to start but the swimming is so so cool.

Swimming has so kindly been organised by  Delia, Nicola and Nick and have no words to say how thankful I am 🙏 I turned up for my first session literally shitting myself both Ann and I didn’t sleep the night before – but we needn’t have worried the support of both Delia and Nick in the pool made it seamless and before long I had completed 2 lengths of the pool. Now after some expert tuition I can now swim 600 metres and I actually look like a swimmer well sort of – and its taken 8 sessions but I have learnt to keep my mouth shut whilst swimming. There are a couple of issues at the moment one is that the tube irritates causing me to produce lung juice causing me to cough, not usually a problem but as its connected to a long pipe, I have to get out of the pool to clear out 🤣 Hopefully this will get better, the other is building my lung capacity, the tube is 8mm in diameter and being connected to a snorkel means I have to work hard to get the oxygen in – but all in all its a joy to be swimming again.

To close off I am constantly amazed by the goodwill of the people around me, without which I certainly wouldn’t be here today so thank you. To my swimming coaches a big thanks for your patience, to Delia and Darren thank you for offering to help at the Hever Castle Gauntlet Event and thank you Darren for the offer of the loan for Harrogate – totally blown away. A big thank you also to my friends at Sainsbury’s you treat me normal and make me smile thank you 🙏

To the people who put up with me in the dark times – Ann, Josh, Gabby, Tom and Toby thank you❤❤

Well that didn’t go to plan, the idea of this blog was to describe how wonderful and hard my most recent event was, little did we know.

My 2021 had been a good year, fittest I had been, personal bests in the local 5km races, really good outings in a couple of duathlons and training had gone really well for my 100km Ultra. I had settled in at my new job at Sainsbury’s my colleagues giving a wonderful boost, and was enjoying the most consistent mental health period for years, what could possibly go wrong.

So July 10th had arrived, we had arrived at the starting point for the Race to the Stones, both John and I a little nervous but ready for what lay ahead over the the next two days. My only major worry was the calorific intake and how I could get 3000 calories in, my food pipe unfortunately had closed to the extent that I could only consume liquids, made up of soup and my special shakes. My wonderful dietitian in Worcester had supplied me with a collection of 250ml bottles of fortisips(high calorific shakes) and was to drink 5 a day during the ultra to give me 2000 calories, giving the balance to be made up of energy gels – all sorted.

Our wave start time was 8.10, and bang on time we were off in the drizzle, heading through a wooded area towards the first hill and onto the Ridgeway. The mix of people on the run was staggering, and the general humour and friendliness was invigorating, we started at a good steady pace heading for the first pit stop after 10km. Unfortunately by this stage I had tried my plan for nutrition, with my first bottle of fruits of the forest milkshake, however even though I had tried it before this didn’t go well making me feel extremely sick. So for the remaining two days I completed the remaining 90km on 8 gels and two pots of porridge and copious amounts of flat coke and sweet tea.

The first day went amazingly well with us smashing our previous personal best by over an hour, the only slight issue was that I had forgotten my device for covering the hole in my neck whilst in the shower. There followed an extremely careful shower and a visit to the food tent for more bloody sweet tea, the legs had held up well and was feeling extremely good for the next day, so an early night in the tent called as we were off at 6 the next morning. No need for an alarm as I was woken by Mr Knobhead who seemed to think 4am was a good time to start packing, anyway following this I had a pot of porridge and another sweet tea. We set off at 6am aiming to get a good start, things went well until the 70km when John’s Achilles heal decided to tear and my right foot decided to explode into 7 blisters 🤯 Following a the next feed stop it was decided John should stop and following being strapped I continued to hobble on, the next 20km flew by, the only issue being downhills where it pushed my toes into the front of my shoe. At 90km I felt a strange presence along side me, I looked to see a grinning John heal strapped and high on ibuprofen gels, the next 10km flew by and we were soon at the staggeringly unremarkable Avebury stones, we had completed the 100km, two years after becoming the quiet silent one.

Following the race there were two days of self isolation to be followed by a routine food pipe stretch to allow me to eat normal food again, what could possibly go wrong 😂 Arriving at Worcester hospital at 7.30, was shown to my bed space by Meg and given the necessary attire and alluring compression socks, which were surprisingly perfect for my extremely sore legs. There then followed a a short intermission whilst I awaited the theatre to become free during which time my consultant Charlie explained the possible downsides of the procedure, the worst of which was perforating the oesophagus wall, however this was highly unlikely only a 0.8% chance – no worries.

So at 11.30 I was delivered to theatre prep, where I met the consultant anaesthetists whom I knew from my previous visits, there was also a junior who had just started, Andy the chief gave me the nod and the fun began – wrong date of birth, no knowledge of my signature always good fun and very relaxing. Cannula fitted,  anaesthetic pumped and off to the world of nod, two hours later and awoke as dozy as ever with a shocker of a sore throat, my doctor came round to check on me explaining how well it had gone. It took longer than usual due to not being able to find the top of my oesophagus, apparently owing to my anatomy and the fact that my food pipe had constricted to about 3mm, once found he had stretched it to about 36mm. After an hour in recovery I was moved to the head and neck ward to continue coming round, about an hour later it was explained that I could try a couple of sips of water.

Well that’s when it all went a bit tits up, upon having the sips about a minute later I had the most excruciating pain across my chest, so severe that I was arching my back off the bed. What followed was a scene from casualty – red alarm button hit by the nurse and in the next minutes I was surrounded by about 30 doctors and nurses(I shit you not). What followed was rather alarming, I had 2 junior doctors trying to put another cannula in( apparently I said to Meg what the f… are they doing). Over the next 30 minutes I was given a rather large dose of morphine and taken for a ct scan, it appears that during the dilation my oesophagus was perforated allowing some water and crap to leak into my chest cavity. Following the results I was blue lighted to the wonderful Fawlty Toweresq QE hospital in Birmingham as they were more equipped to deal with my issue. For the next six days I was not allowed to eat in order for my   oesophagus to heal, hence over the next 5 days I lost 5.5kg, finally on the Sunday I was allowed a Jelly. I relate the QE to Fawlty Towers as during my time there I had no washes, and not once did they change my bed sheets, also on my day of freedom I was still receiving oxygen, which the doctors hadn’t noticed so in reality should have stayed in another day to be weaned off. Anyway better off at home with my own nurse 😅 what was staggering is that a week earlier I had run 100km and now couldn’t get up the stairs.

I have since found out that this was a rather serious illness and had an infection taken hold it would have a bit dodgy(50/50) but thanks to the speedy response in Worcester and on 3 lots of antibiotics immediately every thing was OK. Apparently during the emergency part I was heard to call my consultant a fu….. tw.. , I blame the morphine and luckily I have apologised and he is fine 🙂

The whole experience has been rather challenging and the loss of fitness and inability to run and cycle has been rather stressful, my family has had a lot to put up with and my wife Ann is an absolute angel, and the occasional misinterpreted comments make me smile. The support of my tri club friends is above and beyond as is the constant support of my friends at Sainsburys, the spot on crew and Jonty have been fab. My kids as ever are brilliant and thank you to my fellow grumpy old man Jon, you are a star.

I keep saying this but next year can’t be as bad, and I am planning  duathlons, triathlons and an iron-man , my swimming snorkel is being fitted on November 23rd so bring it on 💪💪

So another 5 months have past since my last blog, and wow what a 5 months they have been !!

Since my last post I have had my food pipe stretched, which I have to say is quiet possibly the most uncomfortable and frankly hideous experience since radiotherapy. My food pipe had unfortunately shrunk to 8mm, hence being on a liquid diet, during the operation they managed to stretch it to a hugely impressive 34mm, 6mm wider than the normal pipeline. Wonderful I thought as I was being regaled with this information, steak dinners here we come – upon being released the following day I was dreaming of what to eat. Unfortunately my dreams were dashed, owing to my anatomy being somewhat buggered, a sump has formed in my food pipe which cannot be straightened meaning that I can only swallow foods which have been blended. Now there are two alternatives available to me, I either have proper food and chew to a consistency which is soup like or I cut out the middle man and blend it to shit 😂. Now I cannot taste or smell so food has lost a lot appeal, it is purely my fuel – however as mad as it seems I do like to have proper food unfortunately it takes me 2 hours to eat a normal meal, and it gets boring eating cold food.

I have also started working at Sainsbury’s in Hereford, and boy does it feel good – the worst thing about the hole in the neck thing is not being able to do what I did for a job, and also the thoughts will I be able to work again properly, without the fatigue limiting how much I can work. Since my issues with depression one of the overwhelming side effects has been my OCD, and now my job at Sainsbury’s satisfies these tendencies- so please if you ever visit the pop and juice aisles at Sainsbury’s in Hereford please be sure to align the bottles following your selection!!

Since my last blog I have continued training as hard as ever and am planning 2 ultra marathons, 2 marathons, 100 mile cycle and a few time trials. I hasten to add some events have been carried over from 2020 but it would be rude not to complete them, hopefully will have some company from the 2 John’s one for shorter distances and one for longer distances- a big 🙏, I will also have support from my wonderful children who I know doubt I will embarrass as usual and my cycling friends you all know who you are – I am truly blessed with my friends.

To labour a point my running and cycling has kept me sane over the last two and a half years giving me goals to aim for, the other blessing has been the people I have met on my ‘journey’, my exercise friends new and old and my new colleagues at Sainsbury’s who after a lot of worrying about going to work have treated me normally. Being treated normally is the key to recovery, being regarded as a special case really does my head in, the amusing reactions of customers keeps me smiling- one customer explained that she works with special needs people so understands what I am going through, also the colleague who presumed I was deaf as well, I did feel a little guilty for the sign language 😀

The only negative is the realisation that I am going to have a regular operation to have my food pipe stretched, 4 months after my last stretch it’s already becoming increasingly difficult to swallow larger pieces of food, so smoothies and blended lasagne here we come. In the grand scheme of things a very small inconvenience, we should all take time to think how lucky we are and take the time to help others where possible.

Please take care and see you all soon 👌👍🏻💪🏼

So what’s happened since April, it’s been an interesting period in everyone’s world, not least the devastating consequences of a world pandemic. I think everyone has been affected in one way or another whether the loss of a loved one or the disruption to a normal way of living – lets hope we all learn valuable lessons which we don’t forget.

So how’s the neck piercing and other lumps, well the lump in my neck turned out to be the remaining half of my thyroid which rotated 180 degrees and turns out is under active, hence the excessive fatigue and sweating, at this point I should point out that I don’t wear a bandana when running for a cool look, but to keep the sweat out of my eyes 🥵 The other issue which has developed is my issue with swallowing food, having had some x-rays it appears that my food pipe has narrowed to the size of a small straw and to the extent where I can only eat blended food, soup or special shakes. I am booked for an operation on Sept 9th to have my food pipe stretched, apparently once stretched I should hopefully be able to talk a bit louder as well – Sorry everyone 🤬

For me COVID has taken my dad, he had been in a care home ever since I was diagnosed with Cancer, and luckily owing to his dementia he never knew I had a laryngectomy. My dad was my hero in every way from his working life to his family life I have always looked to him for guidance, his quest for helping others was an inspiration and over 30 years he raised in excess of a million pounds for the local hospital. In all the time through childhood and adulthood I never heard him argue with my mum, I never heard him swear, they truly broke the mould with Peter Andrews, my only sadness was that I didn’t see him after Christmas owing to illness on both our parts and then lockdown.

Unfortunately due to COVID I have also been made redundant, having worked for Fatboys for 3 years I can honestly say they have been some of the most enjoyable in my working life. It would not be too extreme to say the people working there have helped my recovery massively over the last 2 years, their support from has been amazing and I will miss my days there.

During my recent travails I have constantly bleated on about my exercise and how it has helped with my recovery, without the Tri Club sessions and my Saturday social cycle rides I would have really struggled. The people involved in these groups have treated me normally which believe me helps so much – through my wonderful SLT (speech and language therapist) at Worcester I have also been in contact with Sam another laryngectomee. Sam had his neck piercing when he was very young and some 20 years ago, our conversations during our cycle rides have been enjoyable and have helped over the recent months. Oh and just to bleat on a bit more mileage to date since operation stands at 979 miles run and 1,387 cycled happy days 😴

So nearly up to date, a day to go till my throat is stretched and I can eat proper food again maybe even meat😊 A couple of things to end with I recently visited a pharmacy to collect my shakes, as per usual I had my base plate and filter on show. After asking for my prescription by holding my baseplate as usual the pharmacist asked if I had a sore throat, after a stunned silence I replied no I don’t have a throat, to which she turned away to retrieve my shakes. Upon return she then asked if I paid for my prescriptions(reasonable question) I replied no I am exempt, to which the then asked if it was a medical exemption – was it me ? 😂😂

Last thing to sum up the last 2 years, due to COVID prior to operations the patients have been asked to self isolate for 14 days, a pain but totally understandable. My self isolation started on the 26th August, unfortunately Gabby’s 18th birthday was on the 28th so that meant a deliveroo, also on the 30th a good friends birthday cycle in the Elan Valley – what a pisser but necessary. However on my 10th day of self isolation I received a letter telling me due to changes being made to the system for operations, isolation would only need to be for three days.

Happy days, speak to you soon with a stretched throat and a steak dinner, thank you for reading.

So what’s been happening in the last two months – lumps, pandemics, biopsies, MRI’s, half marathons so generally pretty quiet. The covid 19 has had the effect of my vulnerable soul being under house arrest by my wife – only allowed out for one hours exercise per day, the other hours are spent in the laundry or the garden😀 Being serious Ann my wife is a Junior Sister on the intensive unit at Hereford Hospital and has been a little busy – the rest of the brood have bad backs from the bowing and curtsying we have to do when she enters a room.

Over the last two months I have unfortunately developed a lump on my neck next to my piercing-my consultant ‘Sultry’ is unsure what it is but might be my partial thyroid having rotated, hopefully not another bloody cancer. So March and April has been filled with scans and biopsies-just waiting for definitive results, when taking the biopsy with a big f…-off needle they are having trouble getting enough cells as the lump is next to my carotid artery 😂😂 So fingers crossed.

Since my last blog I have reached the milestone of running 500 Miles since my laryngectomy in July, I have loved every minute(well nearly every one) – it has given me the drive and goals to get well. The last two events The Oulton Park Half and the Ady Watts Half have been two of the most memorable events so far, the Oulton because it was memories of my childhood watching motor racing and also my mum, sister and Gabs watched me run, and the Ady Watts because I ran with two people Stephen and Claire, just chatting and didn’t give a stuff about times.

I can truly say that my family apart, exercise and the people involved in my exercise have been one of the reasons I have recovered so quickly. The current lockdown has made me realise how much I miss the weekly park runs and chats with Jon and Scotty over coffee, the Hereford Triathlon Club weekly run session where people have treated me normally and made me feel comfortable. The lockdown has given us the blessing of being a family of 5 again and given the opportunity of going cycling with my eldest Josh – I had forgotten how it feels to be left behind on every ride😂

One of the most staggering effects of the lockdown is that I have become my youngest son Tom’s de facto teacher, which for those people who know me is one of the biggest jokes going. However wait one minute, it is working and all homework is done on time and there are no tantrums from me at all-who would have thought!!

To finish I thought I would just finish with a pro’s and con’s list for having a laryngectomy:

Pro’s

• Wifey lets me buy loads of stuff for running and cycling – because it helps😎🏃‍♂️🤪
• Can make people feel very uncomfortable(I obviously don’t as it’s not in my nature)😂😂😂
• Don’t get out of breath 🤐
• Don’t have to purchase a face mask😷
• Pretend to not be able to talk😎🗣
• Not able to smell mine or other peoples farts👌🙏
• Free prescriptions for life🏥
• Excused to go to bed at anytime due to fatigue😂

Con’s

• Can’t surf or swim with my kids🏄🏼🏄🏼‍♂️🏄🏼‍♀️
• No taste at all – miss favourite foods, Asparagus, marmite🌭🍺
• Am now a bloody vegetarian as can’t swallow meat🤬
• Can’t smell cooking, wife’s perfume👃🏼
• Can’t snot rocket or spit👃🏼
• Can’t breathe when doing high intensity exercise(zone 4)🚵🏼
• Takes me so long to eat, that my food goes cold😨😱
• Can’t eat burgers from McDonald’s only bloody fillet of fish🍔
• If I bend down to soon after eating, it all comes out🤮😂

Thanks for reading hope you all stay safe ❤️❤️