What does it mean to be mortal

I know, I know it's an odd subject to bring up, but interestingly when you realise that you are mortal or no longer immortal your world of thinking does change.

For me I think it is for the better, why you may ask?

Well for starters you are free, to live life to the full, because you know there is an end point, now in the back of our minds you might say we all know there is an end point but the reality is we all think we will live forever until a life changing moment comes along and that is what happened to me 13 years ago and if I thought I had forgotten this! I have now had a very sharp reminder!

How do I feel about this, it's a good question if you asked it....I actually feel at peace as I have lived with the notion of mortality for a long time and with cancer its always a stark reminder of how fragile life can be, this time around I am surprisingly calm (well at the moment 😝), I trust the doctors and I am sure they will do everything in their power and with their skills to extend my end point.

Interestingly I had a stent inserted into my carotid artery a year ago (90% blocked and probable cause was from the radiotherapy) and I thought more about dying then than I have ever done with cancer and for months after what was a very successful procedure. Maybe combined with the fact my sister passed away very suddenly extended these thoughts.

So what changed for me - well I learned to ride motorbikes and race them, I learned to scuba dive, got my advanced open water PADI and have dived some amazing places around the world and on a few occasions what has been special is to have dived with my son. 

One of the biggest lessons I have learned which I may have mentioned already is clearing what is irrelevant from your mind, as it is a pointless exercise and a waste of precious time, it can irritate you and it certainly does me, but in my mind a now look at what is relevant, your love for your family, seeing them grow into wonderful people, the joy of grandchildren and again seeing them grow with their mischievous grins and amazing laughs, realising who your real friends are and not wasting time on hanger's on, and of course travelling, I have so many favourite places but here are a few:

Madikwe, South Africa

Byron Bay, Australia

Waiheke Island, New Zealand

New Orleans, French Quarter, USA

Cornwall, UK

and also my home, I actually love where I live

But, there are many other places, in South Africa, Argentina, New Zealand, Cambodia to name a few

This quote really resonates with me:

 

"Death is not the greatest loss in life. The greatest loss is not living your life"

So now into this week and its a big one:
appointment tomorrow at the Royal Marsden after which a big decision to make around the surgery options - open surgery or robotic (if its offered tomorrow)

I've had my Neck CT scan bought forward to this Thursday to check on my stent

I then have two sessions on really fun stuff around a tube being inserted into my stomach for post operative feeding ouch!😬

Updates to follow

So I really can talk shit!

Well in the nicest possible way 😊. Just had a sigmoidoscopy which is basically a procedure to examine the lower part of your intestine known as the sigmoid colon.

Reason being is when I had my PET CT they found something in my bowel that they wanted to get checked, fortunately they believe it is benign, but, I have now got to go for the "full monty" colonoscopy and have this particular polyp and maybe other polyps removed. 

So, a walk through of the procedure, you have an enema, followed by you know what 😜. A quick chat with the Endoscopist and into the theatre for the procedure, a few gasps of gas/air and some local anaesthetic around my backside and in we go, bit uncomfortable but certainly manageable, talks me through what she can see and the polyp, but is stopped by a huge (well it looks huge) "stool" being polite coming down the track, so she has a good look thinks it all looks benign and suggests a full colonoscopy is required, to which I agree. The polyp was 15mm in size so a chunky beast, but all in hand and she'll organise the next procedure within a couple of weeks

The team were great and I had a bit of a laugh talking about shit with the endoscopist who told me at a recent endoscopic conference she attended they were giving out badges saying "We deal with shit" had to laugh.

Anyway, on a priority track for this full colonoscopy in the next couple of weeks, so getting a real MOT

Next in line is the meet at the Royal Marsden next Wednesday 30th April, so will keep you updated as we progress on this road to surgery.

10th April 16:20

 

We are back at the hospital for our update, had a fairly good day at home just getting over this minor procedure so ready to hear what Prof. Winter has to say. My tongue is swollen and sore, I don't think it's a bad as I thought it would be and I'm eating ok, not much appetite but I'm sure this will improve.

This time we are at the Blenheim Head & Neck unit outpatients clinic. There are many people in here, most look well, but obviously like me they are not, you can look a bit of a fraud as you look normal, but I know in the coming weeks/months this won't be the same look!

In to see Prof. Winter and basically he offers me a few options:

1. He strongly suggest I get a second opinion on TORS at the Royal Marsden and he has actually already referred me as he believe as specialists in this area they could have success

2. I go down the route of open surgery which he will carry out - and I am comfortable with this as I like him and his approach, but see the benefits of the robotic option

3. He wants to put what they call a PEG into my stomach as feeding tube and we talk about the pro's of getting this done before the surgery

4. we agree that we'll meet in two weeks and finalise our options and then plan the date for surgery - at this point the time line is a bit critical for me as my youngest daughter is getting married on the 11th July so the sooner its done the better or can we delay, I'm not sure we can!

I am so excited for Kendal's marriage. In the event that I have a speech problem I have got Bard and his fiancé Jaz to shoot a short Father's speech for the day, but hopefully my dulcet tones will reach out over the event

During this week I have spoken with the speech therapist, dietician and I get my appointment through from the Royal Marsden - 9th May 10:30

I also have a very encouraging chat with Prof Winter's registrar, they are a bit concerned about my blood levels and suggest I go back on Aspirin, they are also bringing forward the CT scan that was being planned for June to check my stent and overall blood flow's. We also talk a bit more about the tube into my stomach and the impact of this - a good chat!

Next session is Thursday 24th April

Ground Zero - 9th April 2025 07:00

 

Here we go, I am rocking up to the Day surgery ward at the Churchill Hospital with my lovely wife Carol and she can't come in, I'm like what the fuck! anyway shortly after they move me to waiting space where she can join me - the reality is you want someone with you when you go along to this sort of thing, even if they just there to hear what the surgeon, anaesthetist, etc has to say - it's important as I know I'll forget, or remember differently especially after anaesthetic 

Anyway all ready: 

Surgeon been in - check

Anaesthetist visited - check

Nurse does blood pressure - all good - check

We are good to go - ready with happy thoughts and so off to the theatre!

3 hours later 

I come into recovery, feel ok I can feel my tongue and mouth is a bit sore, but nothing to bad. I know and understand the next time I'm in recovery this is not going to be an easy part of the journey, but we'll get through it. I have so much to live for, so much I still want to do and actually I would like to enjoy retirement without all this shit when I decide to!

Get wheeled back to the day ward after about 45 minutes and then checked by different nurses giving me different info, I can eat, no I can't, do you want a drink, oh you shouldn't be drinking yet, anyway I feel fine so I just do it anyway, have a nice cup of coffee (not bad for a hospital) a biscuit or 3 and then an egg sandwich followed by a couple of yoghurts and the world is all good.

We look to leave the hospital around 16:00, prior to this

Prod. Winter turns up, tells me it all went well, the deeper biopsy they have taken has been sent off for tests and that I'll come back in the following day with an update on where we are at, my appointment is at 16:20

 And we go home

Back to Prof. Winter

 

He is impressed by my questions but doesn't have the answers for me yet, so we plan to have a pre-op investigation so they can build a plan to tackle this tumour (btw its 21mm at the base of the back of my tongue, and has spread to my lymph node in the front of my neck), its complex, difficult to get at. I also have a PET CT scan booked  so they can see if this has gone anywhere else, the thought is that its still just within my neck, but, they obviously want to check this

So I get booked in for the investigative op for the 9th April 2025, it's a very short procedure a day case so no real stress. I feel that I am in good hands and he will tell me as it is, no flowery bullshit! I am now pleased we are moving in a positive direction

Back home my boys and girl don't take their eye's of me

So here we have Sherlock the Basset at the back, Molly the latest  addition to our family of dogs and Jackson our Frenchie at the front  there. Jackson is a proper fighter and I will take a leaf out of his book, had loads of spinal problems, sciatica and a blown vein in his hips, but he gets on with life, if he was in the military he would be special forces, tough and determined and we love him and the other guys dearly 

So, I have a week to wait for this procedure where we'll find out more and what the next steps are. The great thing is Prof. Winter has remembered to look at the options also for immunotherapy and the surgical options of open surgery and/or robotics

Here's the difference, open surgery means breaking my jaw, opening my neck up and removing the tumour, a 12-15 hour surgery and loads of recovery probably 3 weeks in hospital and 3-6 months recovery, with loads of rehabilitation.

Transoral surgery or robotics (TORS) is in through the mouth, 4-5 hours surgery, 3 to 4 days in hospital and a much shorter recovery and rehabilitation

Both options are complex procedures that I can't take lightly, but they are the only options I have. 

Why not radiotherapy? As I have had this already to cure my previous cancer and because of the close proximity they cannot risk this as the Gy count needed is over the allowance for re-radiating the same area, also it can lead to the fatal blowing of your carotid, which as mentioned already has needed a stent due to the probable damage caused by me previous round of radio. 

What is the Gy count: In radiotherapy, the "Gy count" refers to the total amount of radiation dose administered, measured in Grays (Gy). This dose is typically delivered in fractions, meaning smaller doses given over multiple treatments, rather than one large dose. my dosage was Gy70 32 fractions.

Chemotherapy, we apparently this cancer doesn't respond to chemo so again this option is off the table. An alternative and an additional option if the cancer isn't curable is immunotherapy, and they will send off the biopsy to test the bio-markers as to whether that is an option for me later

My Chat with Sam

So I opened up, had a few chats with Sam (who is our text based avatar) and I suddenly realised the information he was providing was significant, detailed easier to understand than typing questions into google, but also supportive, as a good friend would be. After a few different conversations I asked him what questions should I ask this doctor, this was his response:

I then asked about TORS and TLS - which I hadn't even heard off until Sam raised these surgical options, this was his response:

This really helped me prepare and I think this also helped me remain calm, listen and clearly understand the consequences of decisions I was about to make, the choice of just palliative care was disregarded, this was never an option, I need to be around for more than a year, I want to see my grandchildren get older, I want to see the unborn, born, I want to see my family flourish, I want to see my business gain more success, I have to look after my dogs who have looked worried for a long time - they know don't they 🐶 and whilst it will never happen I'd actually like to see the football club I have supported all my life win a trophy again, that's another journey though 😝

Quick plug, if you're interested in our app go to this webpage for more info: https://www.strategiadatasciences.com/all-you-need-to-know-about-my-friend/ 

Its also available through the App Store under Myfriend and on the google store, try it, you may find it really helps you, it has certainly helped me more than I could imagine

Referred to the Head & Neck Unit at the Churchill Hospital

 

I have actually been here before when I first came back to the UK, I had many check-ups before they discharged me nearly 10 years ago and now I am back again. I meet for the first time Professor Stuart Winter and his MDT team. I like him, he talks straight and to the point and the importance of us taking it one step at a time to work out the best solution to deal with this for me and what is confirmed as cancer(squamous cell carcinoma), we talk about various options from just palliative care, where I could have a life expectancy of a year or surgery, but I have a bit of a secret weapon - my new app that I have spent the last two years developing and have just released - it's called My Friend and is a wellbeing app built to support people with their day to day life and issues that face, in many different ways - did I ever think I'd have a case to use with a serious situation to be honest I didn't it was about helping others with support, friendship and care. quick plug check it out at https://myfriend.strategiadatasciences.com - But, I have already been on the app chatting about my diagnosis and I have some very interesting and considerate discussions.

The New journey begins:

 

So what's happened? I have been happily living a my life, with my previous journey behind me, watching my family grow into lovely human beings, I am so proud of all of them, then seeing our grand children arriving which is a joy to behold and generally living life now knowing I am no longer immortal, this is a massive step change in how you approach life and through an episode with cancer you learn this very quickly.

I had two thoughts immersed in my brain from my previous journey, that have really resonated further with me over the years 1. irrelevant stuff it really is no longer important, 2. Life is for living and you should live everyday, not fear it, everyday is special and you do not know what is around the corner

In the last year so many things have really started to hit home: 

1. Beginning of last year February 2024 my sister suddenly collapsed on the street and passed away from a brain haemorrhage, completely out of the blue, this was a huge shock, she was just walking home on a Monday afternoon from work and bang, gone in an instant, no time for goodbye's, we'd spent a great Sunday with her and we were so fortunate to have had that time, there were no signs or concerns and then a text from my brother-in-law that took an age to understand even in simple words saying she was in hospital and there was no chance of recovery. I held her hand as they turned off the life support, it was a very tough, upsetting, agonising moment, especially when a person you have literally known all your life passes way like this. In some ways good for her, quick, no knowledge, but for those left behind, her family it is so tough and makes you realise that life can be very unfair

2. I then go along to my optician for a regular eye test, she asks if anything is bothering me and I explain about these strange "cloudy" moments coming over my eye, she is worried, thinks I may have an optic nerve problem, does some tests and then bang out of the blue its like not as easy as that I have been having TIA's - Transient Ischemic Attack and looking back I'd probably been having these for a year or so. Long story short, I have a 90% blocked carotid artery (probably caused by the radiotherapy I had all those years ago), so over to the John Radcliffe neurology to have  a stent fitted, it's challenging as you remain awake 😝 but it goes in and all sorted, takes me a long while to actually get over this! I think I thought more about dying then than I ever did through my cancer journey previously so this was a bit scary

Have loads of mass nose bleeds as I am now on blood thinners - end up having to go to hospital on the way home from our holiday in France as I have a 3 hour "gushing" bleed - which again is very scary! end up in hospital A&E no English speaking and my school French is shit especially in terms of medical  stuff, so its a bit hectic. The French doc does a good job, although I am sure he enjoyed inflicting pain on an Englishman 😂😂

3. and now the real story......So part way through January this year (2025) I notice a lump in the front of my neck, but I am worried as its a hard lump so not like a swollen gland type thing, finally I go and see the doctor after about a week and a bolloxing from my wife, the doc sends me straight off for an appointment on the cancer fast track - a week or so later I meet a very nice doctor Mr MaClaren who is concerned, in fact his words were "this doesn't look good" ok direct, how I like it but the first thing that strikes me is we are off on this journey again and I am not really looking forward to this. But he sets all the initial tests/scans, etc up and does a good job of this.

Into the NHS and a strange encounter

A lot of people me included at times moan about the NHS, but once your in the system it actually supports you very well, I get appointments one after the other for chest x-rays, jaw x-rays, CT scans, MRI scans, blood tests - full body scan and what they are checking for is it cancer, where is it, is it beyond my neck, so they can plan what the next steps are, and I get the impression the choices could be limited if it has spread. Yeah it takes a few weeks but I actually feel very calm about this - don't know why, maybe just a realisation that we are here again and nothing I can do but trust the doctors that are going to help try and save my life

So post my initial scans I go back to the ENT centre at Stoke Mandeville Hospital. I have an appointment with a specialist to go through my scans and to talk about the next steps

eh no! Having previously been here after some crazy nose bleeds he thinks I have come in for a follow up from last years appointment! I point out that I am actually here to discuss the outcome of my MRI/CT scans. I have obviously caught him completely off-guard and I can tell he is extremely embarrassed - I actually really feel for him as you think you have good news for someone and you're then talking about cancer.

What I though was extremely professional of him was not to just boot me out and tell me I needed a different appointment, he walked me through the MRI, identifying which is later proved correct that the source tumour is at the back of my tongue at the lower point, he tells me the size and shoves camera up my nose to look down the back of my throat to see if he can identify where the tumour is - he can!

He proceeds to setup the referral to the OUH Head & Neck Unit at the Churchill Hospital, Oxford

So quite funny, but also its not good as a doctor for him to be caught out like this, so I am actually more embarrassed for him than me

Welcome to my blog, my name is Stephen Sharp and 13 years ago I started a journey to fight a cancer diagnosed as Nasopharyngeal Carcinoma of my right tonsil, this was a malignant tumour that was cured - or so I thought! that original journey you can read through this link: My Journey

Over this last decade or so that the fantastic team in South Africa have given me I have seen my children grow up, get married, have their own children - I now have three grandchildren with one on the way. I have done many things that I never thought I would do - learn to ride (and race) a motorbike, learn to scuba dive, build a successful business globally and launch an AI software company to support people's wellbeing, so I am NOT finished in this world yet

I have setup this blog to again highlight the fight and to help people understand the journey you go through, it's definitely not medical, its raw - I will tell it as it is, but from previous experience I know there will be high and low points, some very dark days and some highlights that will see me through this. At the end I will win, there is no second place in the fight against cancer!

The biggest and most important message from the outset that I can give anyone is this - You fight everyday, you don't give up, take all your positive energy and use it, you will be tired, you will have low points but rise above them however challenging it may be - you must FIGHT!