Cardiff, Work and another Neck Piercing

So another several weeks and another blog, a lot has happened since my last effort and things are moving in the right direction. Back at work two days a week(more later), 13.2 miles run in Cardiff and confirmation of another stay in Worcester Hospital, so without further ado and if you’re sitting comfortably I will begin.

So October 6th came around quicker than expected, 13.2 miles around the streets of Cardiff-my aim to get round crawl or walk, I surprised myself 2 hours and 41 minutes, the Welsh support was truly inspiring. The Half Marathon had the obvious significance of my recent battles, but not many are aware of another notable reason for running and that was my battle 8 years ago with depression and the subsequent loss of shoelaces and belt in a Cardiff police cell. The tears at the end of the race were tears of joy, relief and a really big F-U to Cancer – ‘it will not define me, only drive me forwards’. Cardiff also taught me a valuable lesson-make sure you keep in touch with those people that mean a lot, through my recent battles I have become reacquainted with a very dear friend whom I have known since I was very young-Gill thank you for the lovely post race meal and we will see you soon😘

The following Tuesday and it was time to return to work, nervous does not do how I was feeling justice – how would people react, would the neck piercing disturb, how would eating be, and would the commute to Stratford-upon-Avon finish me off ? I needn’t have worried, throughout the last 18 months Fatboys have been a constant support from Chris the MD through to the happy band of campers in the sales office, work has been a blessing. The most important factor with Cancer is normality-being treated no differently, still having the piss taken, operating under the same rules – no special treatment. A big thank you to everyone especially Laura, James and Neil whom live in the sales office and have constantly made me laugh. With regards the commute, I have used it to brush up on my audiobook listening and also my singing😀

So what does being a laryngectomee mean, well double glazing salesmen do not know what to say when you open the door to them in the middle of cleaning your neck piercing. Still trying to get used to not getting out of breath whilst exercising and also not being able to snot rocket is a real problem when on long runs/cycles. Another drawback I have found is not being able to bend down to do things/pick things up – makes me cough rather violently- also cannot lie down flat with my head flat on ground/bed – tried to do it, with the rather amusing sight of not being able to sit up again. Apparently they have whilst giving me my rather attractive neck piercing and dissection cut through all the muscles in my neck – resulting in this consequence but a positive side effect is no double chin anymore.

Now for a little moan the doctors, nurses and all support staff have been unbelievably fantastic and I will not hear a word said against the NHS, I think you all know a however is coming. However in the wonderful USA & Australia they have a concerted effort to promote exercise for cancer patients – since my recent issues I have struggled to find information about exercise for cancer patients in the UK. Since my surgery through the help of http://www.colemancoaching.co.uk and http://www.adywatts.com I have been using exercise – it has helped my mental health but also I firmly believe it has assisted in the healing process. Prior to my latest surgery as you will know, I had taken up running after Radiotherapy and again this helped me recover quicker but also I was stronger and healthier for the surgery. There have been studies carried out in USA and Australia which back this up, my question is why no studies in the UK – cancer is currently the most prevalent illness, surely we should be trying everything – I may be talking bollocks but surely it’s worth trying. – WINGE OVER 🤔

Final part of this blog, and its an update – my appointment for my latest surgery has been set as November 19th to have my speaking valve fitted. This will be memorable for two reasons one is that I will hopefully be able to talk again ‘whoop whoop’, and the second is that it is my eldest son Josh’s birthday😩Hopefully I will only be in for one night, but will not hold my breath(sorry I can’t) – this second piercing will mean a little valve can be fitted between my windpipe and my oesophagus(food pipe), and will mean I can talk again and stop annoying everyone by tapping them to get attention😂

That’s me done, hopefully the next time I write my blog I will be able to speak again – thank you and goodnight❤️❤️💪🏼

3 Months and Counting

Well it’s all about anniversaries, my last blog celebrated a year since being diagnosed, this blog celebrates 12 weeks since my voice box was removed and I became a Laryngectomee. Wow how time flys when you’ve had your throat cut and lose your voice, and two of your senses(taste and smell)😀 and it continues to be an ever changing, life affirming series of events.

Over the last month I have been pushing the boundaries, sometimes to far and have had to pause but it is the only way I know, the quote above sums up the recent weeks very succinctly (just ask my long suffering wife of 24 years – shit now that is an anniversary 👰🏼🎊).

The last month has also shown me the true value of friendship, the support we have received has been truly inspiring – I always said social media was a waste of time – well the comments I have received over the last 12 months have blown me away and have fuelled my recovery.

Cancer in whatever form it takes is debilitating, whether physically or mentally and what I have learned over the last twelve months is to value and fight for every minute we have. Also try and face the illness with an attitude of hope and look for the positives – since surgery I no longer have a double chin; I can no longer get out of breath; free prescriptions for life, I mean come on what could be better👌 People find this attitude to be a little flippant, I am sorry but positivity is the only weapon we have to fight this terrible illness.

I have also in the last week had my first official follow-up with my surgeon, and everything is looking good and will be revisiting my friends on the head and neck ward in November to have another operation to fit my speech valve. Basically it is a non return valve fitted between my food pipe and wind pipe, this should allow me to direct breath so as to be able to speak again👏🏻. I had a test run at the hospital where they shoved a rubber tube up my nose and connected the other end to my stoma and bugger me I could talk. To say it surprised Ann and I would be an understatement, and just to annoy her one of my first words was ‘fuck’, after 18 months I could here my proper voice with an accent.

I am also in the last week of training for the Cardiff Half Marathon, and have received the invaluable support and help of Rory Coleman in preparing. I met Rory at RunfestRun in May just after the Cancer had returned when Gabby and I sat in on a talk by someone who had run over 1,000 marathons, it blew me away as he told of his battles with serious illness and his single mindedness to return stronger. I went up after the talk to pass on my thoughts and ask advice – the response was contact me after the surgery and we will get together. The rest as they say is history, I am proud to say I am being coached by someone who has completed 15 Marathon des Sables – check out his website http://www.colemancoaching.co.uk truly inspirational.

This the first of many goals over the coming months that I am planning to achieve, Cardiff is for me, but over the next 12 months I am aiming to raise money for a variety of cancer charities through completing various events on a monthly basis. Confirmed to date are an Ultra Marathon, several duathlons, hopefully the London Marathon and many more – I will be setting up a just giving page any help would be appreciated.

Hopefully my next blog will be about how wonderful the Cardiff Half was, but if nothing else I will be seeing friends I haven’t seen for a long time and proving to myself that I can still do stuff. Anyway I need to go as Wheeler Dealers is about to start and this repeat is about a Ford Escort – I know how to live 👌👌

Cheers Rich

My Cancer Anniversary & Exercise

Well that’s been a difficult few weeks, hence the delay in writing my blog. It’s been a year since the day I was diagnosed with the big C and wow what a year, I cannot believe what we as family have endured – but I have to say it makes you stronger.

Over the recent weeks I have stepped up my exercise, this is my primary method of dealing with the cancer and the dark thoughts which accompany it, and it works – it gives a sense of purpose, and stops me wallowing in self pity. As some will know I am going to try running/walking the Cardiff Half Marathon on October 6th – I find goals and plans help me to focus on other things and takes my mind off tubes, filters, nebulisers and all the daily routines.

I always look for the positives, with regards the laryngectomy it has come in the form of not getting out of breath when exercising-believe me it is very weird, unfortunately it comes with a negative I cannot spit or snot rocket 🤔 which for you exercisers out there can understand is quite shocking. The other rather amusing sight at the gym is when going for a shower I have to wear a bib (if water goes in the hole in my neck I drown😂) I don’t think other gym people know where to look, but as with all things British nobody has said what the fuck is that😂

The ENT team at Worcester Hospital continue to be amazing (Catherine; Sarah and the wonderful Mim who continues to have to put up with my lousy sense of humour), have now had all my stitches removed, and have progressed to only having the tube in my neck every 36 hours. I now have a base plate which sticks directly to my skin around the hole in my neck to which I attach a filter, trust this thing sticks like super glue and takes 15 minutes of sheer agony to detach it from my skin.

Overall I think one of the biggest pain in the arse things about this cancer shit is all the bloody routines I have to follow – nebulisers, medication, filters, cleaning, more filters, cleaning and nebulisers and to cap it all it takes me an hour to eat a bowl of soup😂The swallowing and eating continue to be one of the biggest challenges, I think I have it sussed and then regurgitation city here I come, but I am getting better although I will never eat gherkins again😂

So exercise is my salvation, I wish everyone who struggles with illness in whatever capacity could find ‘their thing’, that takes them away from the daily grind, that gives them purpose. Running and cycling gives me freedom from worries whether that be will the cancer come back, or depressive thoughts, when exercising my head is clear and I feel chilled. I made a comment on facebook about cyclists looking miserable and not acknowledging other cyclists – please if it makes you that miserable don’t do it, when you pass another person wearing an ill fitting lycra outfit, smile and wave and think it’s not just me that looks like a pillock.

The last year has taught me the power of positive thought, I could not have imagined the horrors – the radiotherapy, looking like desperate dan and having a big hole in my neck. But here’s the thing, I am lucky I have a loving family, wonderful caring friends and I am still here fighting, yes I have bad days but the good days far out way them and I smile more than I frown. If there is a thought I can leave with people is, if you know someone who is ill – do not treat them differently – all we want is to be treated normally – the best people to copy are children there are no boundaries – if you want to know what is on my neck just ask do not stare😂😂

So enough from me for now, I hope you enjoy reading as much as I enjoy writing, and remember if you meet me I have no voice but I am not deaf so no need to shout !!

Soups, Blended Sausage & Beans and Paradise!!

So folks I have now been home for 2 weeks, and a routine has become second nature. My daily routine has been 3 nebulisers, 2 tube changes, 5 feeds through my nose and 12 meds, the major issue has been raging diarrhoea for 5 weeks and rapid muscle and fat loss.

My family have been fantastic, despite my occasional frustrated outbursts, in hospital nobody knew I had a voice, but at home I had never been without. Not being able to eat and drink has been hard the swollen face was so unexpected and the last two weeks of no food had been frustrating, as well as the lack of exercise through being too weak.

We also found out a few facts and figures, the chances of cancer returning after radiotherapy is 2%, and the chances of a leak following laryngectomy and neck dissection is 1%, I think this makes me pretty outstanding 😂

Anyway the day of my swallow test came round, despite saying otherwise I had built up my hope’s up, our trip to Cornwall depended on it in my head. My swallow test was being done in Kidderminster hospital followed by meeting my specialists in Worcester – I have to say the liquid you have to swallow is hideous and tastes nothing like orange.

By 10.30 we returned to Worcester for the results, this took a bit of time due to images, reports and doctors in theatre – eventually results were in. Everything looked ok BUT, there was a small sump where the leak had been so it was decided a liquid/one texture diet should be followed so any small bits of food would not collect in the sump. Disappointed does not sum up my initial reaction no cornish pasties, cream teas for the second holiday in a row. The previous year my throat so sore from first bout of cancer I was on liquids – but I am alive small sacrifices initially so what if its liquids we are going to be going to paradise😁

My first treat after getting my news, was my first cappuccino in 6 weeks and did it taste good, and my first meal was tomato soup. Since then I have had the following blended, scrambled egg and beans(see below), sausage and beans, lasagne, cottage pie and a multitude of soups.

The hardest part of the whole cancer experience has been the knowledge that I can’t eat my favourite holiday foods, or do one of my favourite hobbies body boarding in the wonderful cornish sea. This is compounded by not being able to exercise fully, I have on occasions been a complete pain in the arse to my family, for this I apologise and continue to work on my head and how to best deal with it all.

Thanks as ever for reading I hope you find it a little bit interesting.

Blue Monday and the Temporary Return of the Fourth Child

It’s taken a little more time than expected but here is the next part of my battle.

So Blue Monday – the day of my test to see if the leak in my neck was healed sufficiently to allow me to eat again, it involved drinking a cup of blue water and looking if it came out of the drains placed in my neck. So right side all good, however it was leaking out of the left, devastated no food or drink for two more weeks and having to be fed through my nose, probably the most annoying part of my experience to date.

My recent history has been blighted with various battles with depression, and as a result I tend to react badly to things I cannot control – waiting for results for biopsy, waiting for radiotherapy to start and now having to wait for eating and drinking. My automatic response is to behave like ‘the fourth child’ and thus this came to pass on this occasion sulking like an absolute good-un. I had built my hopes up so much, and was brought down in literally 5 minutes, I was then informed I would have wait a further two before they could test me again, just before our holiday to Cornwall.

The following two hours I felt very low, the wonderful Dr. N however took time to come and see me and lifted my spirits, I was then able to reset my goals and planned how I was going to get there. I also had a visit from the psychologist Gareth who had heard the news – all through the 4 weeks he had visited and checked my mindset, the whole Head and Neck team are sensational and are the reason I was able to stay so positive. A perfect indication of this was after there shift’s had finished I had visits from both Dr.N and also Dr.G.

The following morning on ward rounds it was explained that the leak was taking longer to heal owing to my close relationship with radiotherapy, the nature of the treatment had weakened the areas in my neck hence the leak. My team of consultants are and remain fantastic, they never spoke at me and always explained what was and would happen in the future and my next swallow test was booked. It was at this stage I met Mr.D the nurses favourite for the first time and hatched my cunning plan, I got a picture of the Dr of LinkedIn and got my wife to print and frame the picture and bring in to the ward. That afternoon I presented the picture which was liked greatly, what I didn’t expect was that it would be placed on public display causing much hilarity, the issue was that the next morning Mr.D was on ward rounds and saw the picture and took it very well.

The above quote is my favourite and what I am trying to always follow, the following day after my mini episode my doctors announced that as Ann is a nurse I was going to be allowed home the only issue being my feed tube. However nothing ever can go that smoothly, first I had to have the remaining staples removed along with 10 stitches around my stoma – simple, unfortunately no, the staples were easily removed by Abby but the stitches needed a doctor. The stitches had been in for nearly 4 weeks and were a little submerged in the skin, so a degree of furtling was required which was rather painful, it was like loosing a toenail and there was more than 10 stitches 😭.

All done and ready for home the next day, to say I didn’t sleep would be an understatement, I was loosing my safety net, could we cope with the tube changes, the feeds and the general things that needed doing. The day arrived and all my supplies were prepared – 4 storage boxes, and three cases of feed, Ann arrived looking as apprehensive as me but we were ready and I said my goodbyes. I was sad in a way to leave – these lovely people had looked after me for 4 weeks, I was worried about what faced us but this was the next progression, the next step on the road to health.

Before I finish I promised a couple of people a shout out so here goes:

The Andrews Sisters – Abby; Becky and Meg – Thank you is not sufficient ❤️❤️

The Nursing Crew – Ann, Beth, Charlie, Lisma, Marina, Rosily and Saji – Nothing to say but thank you ❤️❤️

A Gaggle of HCA’s – Beth, Donna, Michaela, Sharon, Simone, and Vilma – Kept me smiling throughout ❤️❤️

Finally a big thank you to Tanya and please if you can return the photo remember share and share alike😂😂❤️❤️

Saturday Night Theatre and the ‘Andrews Sisters’

So are we all sitting comfortably then I shall begin the next – never straight forward story of my fun and games. So everything was going swimmingly And I was given the news following a swallow test that I could start on fluids and pureed food so I had first cup of tea for 8 days – so good.

This was followed by a lovely meal of salmon, beans and potatoes

It actually tastes quite good, so everything was moving along really well, my ng tube(tube up nose that feeds you) was removed – total bliss I could wipe my nose properly and was nearly ready to return home.

Then as my daughter lovingly recalls I coughed 4 times following a biscuit and my head looked like a ‘puffer fish’, it started with a terrible earache and slowly moved to my neck and before you knew it I looked like a cross between American Dad & Desperate Dan !!

So what happened it appears a fat node burst when I coughed and then got infected, whatever it resulted in several days of morphine induced pain relief, and a 10pm visit to theatre to have my neck washed and drained to release the crap. To say it was a bit of a kick in the balls is an understatement, but things happen !! For the first time ever I have to say I had a few kind words with the man upstairs and hopefully he has listened, I was caught a couple of times feeling sorry for myself but I have said it before the support I have had is humbling and amazing, my wife Ann I cannot thank enough she has driven from Hereford almost everyday- I love you with all my heart.

It is at this stage I feel I should mention the Andrew’s Sisters, they are Becky, Abby and Meg, where do I start Meg was the first face I remember on the head and neck ward, shining a torch in my face in the middle of the night making sure I was ok after my initial op. Meg has been always smiley and keeps you going a very big thank you.

The next sister is Becky well what do I say, to start with a little fearful, but Becky is the one that made me get out of bed, change my lary tube and generally doesn’t let you feel sorry for oneself. However she also has that wonderful compassionate side that is inherent with all the nurses on the head and neck ward.

The final member of the trio is Abby, not around for first week as on holiday, but has made up for it ever since, prior to my set back was always around with a smile and would share a laugh, however when she came in and saw my large heed her face was a picture. I will never forget my trip for a scan on the Saturday, a more caring nurse could you not wish for and a tower of strength, both Ann and I are both so grateful.

I have many nurses to mention and will mention them all in the next blog, I am so thankful to you all.

So nearly up to date, it is amusing watching people come and go, in the last week we’ve had American Pie Dad and the ongoing episodes of Donna & Alan, hospital could have been a real downer but you have to look forward not back. Henry vlll is history as was yesterday , we create tomorrow. There will be setbacks, these are there for us to use to get to the ultimate goals and with love and support we will succeed, thank you for continuing to read and follow.

Richard

Butterflies, Lary tubes and Frankenstein!!

So hello again from the land of laryngectomy and Worcester Hospital, it’s a little late for this blog but unfortunately been otherwise engaged 😂

My op was Tuesday morning(2/7) had to be at Worcester at 7.15, so left sunny Hereford feeling a little uncomfortable with my wonderful wife Ann and her lovely sister who drove us.

First on list so straight into gown and socks and ready to go – 3 surgeons and 2 anaesthetists( a new joke perhaps). Unfortunately my problem is that my anatomy is not conducive to normal airway in mouth( keeps me breathing whilst asleep) so I have to have one up my nose – no problem I here you say !! But they put it up when not asleep definitely not cool😔

Operation was due to last between 5 & 10 hours, thanks to brilliant team was all done 4 – nose disconnected, voice box a goner, they also did a radical neck dissection which removed the naughty nodes in my neck – I did mention they need to rename things so it doesn’t scare the shit out of patients.

Arrived back on head and neck ward at 2.00 looking like Frankenstein, but I thought looking really cool🤔 Ann came over with Fel a close friend who has been a rock to us both, and so the fight has started.

I woke up later after Ann had gone to meet my first wonderful nurses, they are an absolute blessing-unfortunately my first action when I awoke was to throw up everywhere due to the feed-happy days. The rest of that day was spent asleep with the best headache ever, but basically in the land of nod.

I never had a bad instance with my voice I didn’t try to shout and found I couldn’t, I didn’t get angry , I seemed to accept it immediately, do not ask why but I like to think I am reasonably realistic – it’s gone, get on with it.

The following days were mainly spent asleep or coughing, or having various bloods and observations taken, day four my oxygen was reduced to 2 litres and felt as if things were moving in right direction.

I was then met my speech team again, I had already met them first time round with cancer, and they were helping me with mouthing words and that some sounds don’t need a voice box. The example was ‘Butterfly’ so I then practised and found just like a child I could say lots of swear words-twat; dickhead; and fuck were the best – sorry.

Constantly over the 8 days I have been visited by my family and friends this has been a blessing and I am truly humbled by the love and support and gives me the determination to keep smiling so thank you, and all know who you are so am not going to mention everyone.

This was my lovely look after 5 days, the blessing was having my drains removed from the side of my neck, one of my nurse assistants called them my Pravda and givonche bags as I had to carry them everywhere, the removal feels like nothing I have ever experienced before or want to again.

I was then able to walk a little about the ward, and also my flippant sense of humour was coming back much to the joy of everyone😂 The other thing is that I got to know my lary tube a little better – this is the tube which goes into my whole in neck(stoma)to maintain its size and that it doesn’t shrink and has a filter in the end to help moisten and warm up air before it hits my lungs. This has to be removed 3 times a day for cleaning and changing, they are £70 each so you cannot bin them, the single most weird thing is sneezing – it comes out of stoma not my nose – if I miss the act I can take someone’s eye out.

Anyway I am tired now so am signing off next blog will get me up to date if you are still interested 😂 .