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.
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😂😂❤️❤️
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.
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 😂 .
Thank you so much for the response to my first blog, to say I am overwhelmed is an understatement but it has given me a very big lift leading into the coming months.
So nearly D-day and the operation – feeling fairly chilled, the thing that bothers me is knowing my wife could be waiting up to 10 hours for news as the operation can drag on.
The procedure is called a ‘laryngectomy with a neck dissection thrown in to spice it up🤗 the laryngectomy is the removal of the voice box, whilst the dissection bit is the removal of my lymph nodes, this is conducted by two surgeons one to hold the instructions and one to do the operation!! This is followed by two weeks in hospital and then 6 to 12 weeks recovery. My aim is to return to work on September 2nd and then walk/jog the Cardiff half marathon – I have found goals and normality is the key to recovery.
To be honest I cannot wait, the pain at the moment is building (sorry a little bit of self-pity) the worst time is at night, as the pain is at its worst in the right side of my throat and right ear and the acid reflux at its most annoying- the meds only take the edge off now, and the unfortunate thing about morphine and codeine is the blocking skills they possess.
Trying to spend as much of my free time with family when not at work, watching Toy Story 4 with Tom my youngest, lots of take outs and seeing my Mum, Dad and sister – my dad has been in a care home since December, and with the fatigue from the earlier treatment I have not been able to visit as often as I would like (4hr round trip).
The fatigue that you suffer after radiotherapy or chemotherapy is really something to behold. I am now able to fall asleep or rest anywhere and at any time – it is quite astounding, and it’s both your body and mind that just shut down. If anybody is about to or knows someone who is about to go through the cancer merry go round, please get in touch if you need a chat, I believe that for the treatments that I have had and am going through there should be a ‘buddy system’, whereby newly diagnosed patients have the opportunity to contact patients who have recently undergone the treatment. We all fill out forms before in pre-op, surely people can be asked at this stage do you want to be put in touch with/ are you prepared to become a buddy for future patients, a database of patients and ages can then clearly identify similar age/illness.
I believe in this passionately, kids when they go to school have buddies to help them get acclimatised – the NHS is wonderful the nurses and doctors fabulous, but to be able to get the information from the horses mouth(if you want to) would be invaluable. What is radiotherapy like, how does it feel to have mask fitted, what after effects did you have and how did your family cope, travel insurance and just general day to day stuff. I was lucky to have a very good friend Kev, who was 5 weeks ahead of me in the treatment, and I was able to chat and get an insight into what was going to happen and the severity – forewarned is forearmed and I will never forget his help, after all he knows what it’s like when he says I understand, he understands!!
Anyway here endeth the lesson, going to go, 2 days left before entering the Worcester Colosseum for an interesting few hours, cannot fully comprehend that I will no longer have a voice, how will that feel? What happens when you move your lips? My nose will no longer work – what is all that about🤔 Anyway not long to wait.
My name is Richard and I am 53, happily married to Ann for 24 years with three wonderful kids Josh(19); Gabby(16) and Tom(13).
2018 started as any other year Josh in his final year at Hartpury, Gabby in her final year of school and studying for GCSE’s and Tom becoming settled in his first year of secondary school. Ann was working as a nurse in Hereford Hospital and I had found my perfect job with Fatboys Catering in Sales & Marketing. It all seemed the perfect life employed, mortgaged, 3 kids, 2 cars and a fabulous dog – little did we know.
In December 2017 I started to have some issues with my voice-intermittently going hoarse or squeaky towards the end of the day. Having suffered from this in 2012, I believed it to be polyps on my vocal chords, so I went to see my GP who referred me to Hereford ENT for the lovely scope up the nose.
Following the scope , nothing could be seen so was booked for a follow up in May again nothing could be seen although they could not get camera down far enough and so the the journey begins!! My swallowing gradually got worse and was only eating liquid foods and special shakes which tasted very bland.
In July, under anaesthetic I had a biopsy taken and two weeks later it was confirmed as the big C or as it became known ‘Dave’. There then followed a myriad of CT and MRI scans and blood tests and visits to see my wonderful doctors and nurse specialist.
During this time it was made clear that I would be having 30 radiotherapy sessions and that it would be ‘brutal’ to this day though I never had the ‘why me’ I seemed to be fairly philosophical also I had the support of Ann my wife and my 3 wonderful kids.
So on September 27th the
worst 3 months of my 52 years began – Dental Check; Clinical Phycologist; the
fitting of ‘Chas’ my radiotherapy
mask(quite literally the fitting was hideous I can say that now as I kept a
brave face for Ann) and finally the fitting of my best friend for the next 3
months my stomach peg.
On October 15th it began, I had the pep talk from Mark the radiographer who I have to say despite being Welsh was an absolute star, and then I was attached to a table with Chas while a big thing circulated my head and neck – this is easy I thought! I then met Sophie who would be a constant support to myself and Ann over the coming weeks and would provide advice on eating and drinking and the inherent side effects.
Everything changed however on
November 5th, the start of my fourth week – woke up feeling particularly
rough more than the usual fatigue and had been very sick overnight – also realised
hadn’t been to the toilet for 6 days and was looking particularly “Peaky”. Was
sent to Cheltenham Hospital to be assessed overnight – was given fluids and
connected to a morphine driver. The driver was connected to my arm so that was
the end of driving for the next two months, and two visits a day from the
wonderful district nurses to change and monitor my progress.
By now I was reliant on my stomach peg for feeding using the delightful fortisips, my weight was also on the decline down 10%, it was at this stage I had my ‘NO MORE MOMENT’ quickly diffused by my daughter.
My radiotherapy finished on November 23rd, and then the fun really began as the side effects started to build resulting in a serious dose of constipation which lasted 11 days and 5 enemas, and the skin on my neck falling off and having to wear a bright pink soothing collar.
On December 10th, I awoke feeling positively human, having felt crap for 2 months, on January 2nd joined a gym and entered a duathlon in April 2019. From January started visiting the gym daily and eventually started to run and cycle slowly getting stronger.
In April 2019 was feeling great and competed in the Hereford Duathlon with Josh and completed it without to many dramas, I then entered the Hereford 10km in May and things were looking all good.
“It will not beat me and I will not be defined by it.”
I completed the 10km, feeling a little breathless on the hills but nothing out of the ordinary, I then had a couple of days off going for my recovery run on the Wednesday 15th May – however could only manage 2km and was breathless and my throat was sore. The same week I luckily had an appointment with my consultant who scoped me, unfortunately unable to see anything due to the swelling booked me in for another biopsy. However despite being told not to, I attended RunfestRun 31st to the 2nd and managed to run walk with Gabby who was competing in her first 5km event – unfortunately I ended up in medical tent, but had a wonderful time.
The biopsy took place on June 4th and again consultant could only see a partial view of the right vocal chord so a biopsy was taken. As normal was expecting a wait of of two weeks for the results – unfortunately I was back in front of the consultant 6 days later.
The result of the meeting was the cancer was back, and this time it would require major surgery ‘A Laryngectomy’ would be done which in basic terms the removal of my voicebox. This would result in me being a neck breather and having a hole in my neck for the rest of my days, again fairly philosophical I know the end result and know what I’m fighting.
So we are now up to date I will publish a weekly blog as much for my own head and addressing my thoughts, thanks for all the support.
I have many people to thank, Kevin for being a true friend, Fel for keeping an eye on my wife; all at Fatboys – Chris a heartfelt thank you – the four-mad amigo’s James, Laura, Sole and Darren without your laughter and support I would have struggled. To all the medical peeps and facebook and friends far and wide too many to mention thank you, but most of all to my family Ann, Josh, Gabby and Tom you are my reason for fighting, thank you you have been amazing.