A great companion

 A little light-hearted post today, and its about Sherlock my kind natured "super cool" well most of the time Basset Hound 

Sherlock was with me the first time I went through this horrible business, we bought him from a pet shop in South Africa during my radiotherapy treatment, another couple had gone off to decide if they wanted to buy him or not, I had him in my arms and I couldn't let him go, he was going to be our dog and he was there and then we bought him finished the transaction just as the other couple came back, phew! He was the most gorgeous dog I had ever seen, big blue eyes and into everything, and a typical hound from day one, just did his own thing 😂

But was a great comfort and a good buddy to have with me during those "dark times" back in 2011. 

We shipped him back to the UK and he met up with our then current Labrador Gunner another lovely relaxed dog, they became good buddies and Sherlock really was affectionate and caring towards Gunner who was also suffering with cancer and would eventually pass a few months or so later

And here today, Sherlock is still with me, getting on now - 13 years old and now has two siblings - Jackson our French Bulldog who is defo the leader and his new sister Molly a Labrador we have inherited

He hasn't changed though, still doesn't listen, does his own thing and now spends the best part of his day chilling and sleeping. He is a wonderful companion even if at times when he is a real pain in the arse.

The most notable of his successes was escaping out of the garden, climbing over  an assault course of beams making a deck to get out, dragging his bro with him only to be picked up a few hundred metres down the road by the police! big panics in our house, frantically looking for them. I was overseas which stressed everyone out even more, fortunately my daughter saw a post up on Facebook from the police with a picture of these two "criminals 😂" under the police officers desk, eating there treats without a care in the world

You can't do anything but love this dog, plodding around minding his own business, getting duffed up by his bro and just putting up with it most of the time (few punch-ups now and then) but he has certainly helped me over the years and just always there, even when he is in the way 😂😜, but I wouldn't be without him and have felt like that since the day we had to move quickly to buy him

Pre-Op Assessment

 20th May 2025

Today was pre-op assessment day, where you go through a ton of questions, all relatively straightforward and about your overall healthy, followed by an ECG, Karen the specialist nurse was great. 

All good, BP a bit high, probably down to the traffic into Headington - like 45 minutes to do less than a mile and a half. Anyway, need to monitor my BP over the next few weeks before the big day!

When I asked what should I be worried about with the Op, the nurse said "getting here on time" so my thinking is well if thats all I have to worry about then thats great 😂😂

She then showed me where I will need to go and provided me with the contact numbers so my wife can check in (if she wants to of course 😜😂) and see where we are at during the op and post-op when I will be in ICU for a few days, at least she can come and see my ugly mug there if she is so inclined 😉

Next up my colonoscopy on the 2nd June 2025! can't wait 😝

I have a date

 Well at least I hope it's the date as they are planning the surgery as we speak!

As I mentioned before there are a number of parts that have to align so its not straightforward, but I have a date currently as the 18th June 2025, bit later than I was hoping for but something at this stage to work towards, sadly it has meant my daughter has had to re-arrange her wedding which for me and her is a tad upsetting but its pushed out to August now so hopefully that will also give me two months recovery

Anyway, received the letter outlining what you go through in this surgery and whilst I knew it from the discussions we had, when you read it about it you realise how daunting this op is, now I know they have to these days tell you everything that could happen, but I think sometimes less is more, because it did make me think should I bother with this, short thought but I think of the potential pain and suffering that not only I will go through but what I will put my family through, but then you realise so many things to live for - my children's weddings, new grandchildren on top of the amazing one I have already, so a lot to live for!

What is Squamous Cell Carcinoma

So, I have also been checking up on this squamous cell cancer and it is a fucker of a cancer.

Squamous cell carcinoma (SCC) can sometimes be challenging to treat with chemotherapy because of its biological characteristics. Here are a few reasons why SCC might not respond well to chemotherapy: 1. **Cell Structure:** - Squamous cells have a unique structure that can make it difficult for chemotherapy drugs to penetrate and effectively kill the cancer cells. 2. **Drug Resistance:** - Some squamous cell carcinomas may develop resistance to chemotherapy drugs, making them less effective over time. 3. **Growth Rate:** - SCC can sometimes grow at a rate that makes it less susceptible to the effects of chemotherapy, which often targets rapidly dividing cells. 4. **Genetic Factors:** - Genetic mutations within the cancer cells can influence how they respond to treatment

Straight from the App - My Friend - more info here if your interested:  https://www.strategiadatasciences.com/all-you-need-to-know-about-my-friend/

I then asked the same with my negative PD-L1 - had no idea what this was, but was outlined as to why I couldn't have immunotherapy, so into ask the App and hey presto here's the reason:

PD-L1, or programmed death-ligand 1, is a protein that can be expressed on the surface of cells, including some cancer cells. When PD-L1 is present, it can help cancer cells evade the immune system. A negative PD-L1 test result means that the protein is not expressed, or is expressed at very low levels, on your cancer cells. Here are a few reasons why your PD-L1 might be negative: 1. **Tumor Characteristics:** - Not all tumors express PD-L1. The expression can vary widely depending on the type of cancer and individual tumor characteristics. 2. **Genetic Factors:** - Genetic differences in tumors can influence whether PD-L1 is expressed. 3. **Testing Variability:** - Different tests and laboratories might have varying thresholds for what is considered "positive" or "negative." 4. **Tumor Microenvironment:** - The surrounding environment of the tumor, including immune cells and other factors, can affect PD-L1 expression. A negative PD-L1 result might influence treatment decisions, particularly regarding the use of certain immunotherapies

Cancer is NOT your friend

Its an obvious statement, but what you realise obviously is that cancer doesn't care who you are or where your from, how much money you have or don't, if your life is good or bad, the one thing for sure - it is not a friend, its a killer that ultimately kills itself, by either being removed or by killing off its host. The biggest problem which I realised from my last round of cancer is that the body loves growth, so until its told that its not friendly it allows it do its stuff, and therefore the longer its left the worst for the person carrying this awful disease and if you bear in mind apart from the lump forming in my neck I have had no side effects whatsoever, so could have easily have missed this or thought nothing of it and carried on in complete blindness to what was trying to take me out! Well mate we've found ya and were gonna kick the shit out of you

What's next

I have a pre-op assessment next week 

I have my colonoscopy on the 2nd June - that should be fun 😆

And then a wait till the 18th, finger-crossed that this doesn't push out further, as I said a lot depends on a number of moving parts, ICU bed suddenly not available for an example, surgeon not going sick and no doubt other elements that could delay

I'll go more into the recovery later but suffice to say its a challenging recovery period

Meet with Prof. Winter

 A big moment today was getting the latest update from Prof. Winter in this session, a bit of a long nervous day waiting for our 3pm meeting. We arrived on time bit of trouble parking but nothing unusual here at the Churchill Hospital, but into the Blenheim Head and Neck outpatients for the appointment.

Prof. Winter joins us and in essence he doesn't tell us anything new, or that we don't already know, except I would not be receptive to immunotherapy so I am down to one option, well excluding the option of death within a year or so! and that is open surgery. I am having a procedure known as a Bilateral Neck Dissection, with a load of other procedures, which includes my jaw being split, and a flap being prepared to fill the gap left by the tumour once its removed

He calls in his colleague Dr. Gore, a plastic surgeon in the head & neck unit and he specialises in advanced reconstruction techniques and he will ultimately try to ensure that my throat will heal and is "watertight" on the inside so that saliva or food doesn't leak into the tissues of the neck but passes straight into the stomach. 

So, what else does Prof. Winter tell me:

It's a long surgery - 12-16 hours, broken down by the basically the opening of my jaw and neck, where he will remove the lymph nodes on both sides of my neck, he'll then proceed to remove the tumour (I have asked for a picture as I really want to see this fucker of a thing that is trying to kill me!) he will and in his words go for a "cup of tea" 😁 and his colleague will then take some muscle from my leg, attach veins to it to provide blood and keep it alive and then shape it to fit the hole left by the tumour, he will then go for his "cup of tea". Prof. Winter will then return and continue the surgery and in essence start to close everything up, so a start at around 09:00am and maybe completed by 10-11:00pm if there is no serious complications.

I will then go to ICU for 2 or 3 days

Then to the Blenheim Head & Neck Ward for anywhere between 2-4 weeks

He then talks through the risks, which are numerous, but considers me fit enough to get through this surgery. One of the main things well two, you may not ever fully recover your voice and you could always have problems swallowing - but I guess the other option outweighs this in terms of doing nothing. 

The thought of knowing I would die probably within a year really doesn't resonate that well with me. I think I need a few more years to see my family grow, my grandchildren growing up, my children getting married and of course spending time with my wonderful wife, who without her this whole journey would be a horrendous nightmare.

On top of this I really want to see the App I have been developing for the past two years become a success and help loads of people with their mental health.

The surgery will probably be towards the end of May and more likely into June. This is because 1. they are busy! 2. there is a lot to organise and synch up i.e. ICU bed, both surgeons available, theatre time, etc, etc. I sign the consent form and he goes off to make the plan and will let me know the date in due course, hopefully sooner rather than later, especially as I have my daughters wedding on the 11th July that I really don't want to miss!

I meet with the speech therapist (Penny) who then talks to you about the process you go through in recovering your speech and ability to swallow again, this can take a while and you have a tracheotomy in place for the first week to 10 days but people respond well and I am determined to get through this part as quickly as I can and this I believe is where you need strength of character to take this on, push yourself to get back to as normal state as you can.

The key thing that is always on my mind and builds my determination to beat this shit! - this is a fight, a battle everyday until you have won, there is no other way, because the consequences of losing are terminal! You have to believe in yourself and in this type of situation you probably need to be a bit selfish about this because you are genuinely fighting for your life.

So, my plan for the coming month or so while we wait for the date:

• Enjoy good food (might have a very different diet after this)
• Drink wonderful wines (I doubt I'll be consuming much if any after this show)
• Spend time with my wife and family and enjoy the weather whatever it brings, do stuff basically

Oh and try and see if I can finish the Art Room I started to build 😜 along with planting my veg and clearing loads of crap from the garden, everyday stuff but what seems normal is now like on a short schedule all of a sudden

More updates as we carry on with this journey and as we build up to "the date"

PEG installed

7th May 2025

You do feel tired and there is some discomfort from the procedure, with the main problem being able to get up and down from the bed or a chair, this does start to ease a bit but by time I am going home today there is still quite some pain just below my rib cage - to be expected I guess from the fact they have shoved something through your abdomen and that the organs, especially your colon and liver are disrupted and no doubt bruised. in fact the discomfort feels like a bad bruise.

I have more checks and discussions on how to flush the tube and what I need to do post 10-days where you have to push it into your stomach, give it a good twist so that the stomach lining doesn't regrow over it, this will then have to be done daily, so another daily procedure to add to the list of things to do!

Carol pick's me up and we head off home to really get ready for the following day meeting with Prof. Winter, neither of us are sure what to expect. Surprisingly, I do have a fairly good nights sleep, but still in some discomfort when I wake up during the night.

6th May 2025

You may ask what is a PEG - it's a Percutaneous Endoscopic Gastrostomy tube? basically its tube that is inserted into your stomach so you can feed post-op where you may not be able to eat or swallow properly but also to allow your throat or in my case my tongue to heal properly.

Turn up at the Endoscopy department at the John Radcliffe in Oxford, a very full waiting room, but everyone is seen fairly quickly, so I meet the endoscopist that will perform the procedure, and as usual with hospitals these days they talk you through all the risks, which always includes a percentage for death, I am used to hearing his now but you know you have to have this done for the next stage so what are you going to say, eh no, I don't like the idea of that - of course not

Anyway, sign the consent form and straight into the treatment room. The give you a great sedative that completely knocked me out, was the best way to be honest, they shove a camera down into your stomach, they do check down through your throat and everything on the way down and of course into your stomach.

They then make an incision through your abdomen and into your stomach to pull the tube through. 

I come round feel a bit sore and after a couple of hours they transfer me back to the Churchill H&N ward for an overnighter. I haven't had anything to eat since 8pm the night before so I am starving, but can't eat or drink for another couple of hours.

Finally, I get to eat, probably not the best thing but I chose the Chicken Tikka Masala - microwaved 😝 was definitely not the best thing to eat but it did help my hunger! drunk loads of water 

Throughout the day, various checks and how to "flush" the PEG, I do sleep quite well that night, even though the hospital is really cold as they have turned the heating off due the "hot" weather the week before - not really hot or even warm this week 😝

Big Day Yesterday

 So a long day yesterday, travelling up to London and the Royal Marsden Hospital, where we ended up with a two hour wait to see the surgeon who could potentially perform TORS, or TransOral Robotic Surgery.

We met with Prof. Vinidh Paleri, who is a very nice man, and he explained why he couldn't perform robotic surgery due to the deep extent of the tumour and that I would need a wide local excision via an open route and a free flap construction, one of the points we kind of already knew as the surgery leaves a big gap when the tumour is removed, which through robotics cannot be reconstructed so you would then be left with speech, swallowing and other problems due to the size of the "hole" left.

His advise was to have the open surgery and to have this done by Prof. Winter in Oxford as he would be able to perform this earlier than him and time was becoming of the essence.

The tumour is currently classified as T4a N1 M0

What does this mean: It is a squamous cell carcinoma indicating a relatively advanced stage of cancer with local spread and no metastasis. 

T4a means  the tumour has spread into surrounding structures which in my case is into the intrinsic musculature of the tongue and into my submittal node (front lymph node. His examination revealed the bulky tongue based neoplasm to the right hand side. 

N1 signifies the cancer has spread to one lymph on the same side of my neck and its not larger than 3cm. 

M0 means there is no evidence of distant metastasis, which is the good news as meaning it hasn't spread to anywhere else in my body or organs.

In summary, it means it has locally spread into nearby tissue and lymph node, but with no distant metastasis.

I now have a follow up on the 8th May with Prof. Winter to I presume make the plan for the open surgery that he will perform, in the meantime today I was initially at the John Radcliffe for the CT scan to check the stent in my carotid artery and the heart blood flow - hopefully that is all good 👌

Then to the Churchill to discuss the PEG - a tube into my stomach for feeding after the surgery. In this session we discussed the procedure done by endoscopy, tube down my throat, cut through my gut to push the tube out, all under sedation thank fuck! but stay in overnight, all checks done as a number of issues can come up from localised bleeding, to infection in the chest so they organise an overnighter for you, they go through how to keep this tube clean and all the do's and don's! So, I am thinking this bank holiday weekend and then into full flow medical process

I am confident that the team know what they are doing and will do everything they can to get rid of this tumour, in fact I have no doubts, but the stress of thinking about this and trying to remain positive is massive, BUT, you have to keep going, think of what those around you are going through which I'll be honest is difficult when your mind is agog with shit but I realise its important to try and stay calm and try hard not to get irritated by non-issues. It is going to be a big strain on my wife to try and juggle this with looking after our grandkids as she does at the moment and all the other stuff she does and I know that me going through this adds loads of stress and strain on her, as bigger impact on her as on me which is hard to comprehend but as you go through this this I try and think about how to ease that, I am going try and not be to demanding, keep a low profile, have loads of positive thoughts and think of future events, my daughters wedding, my other daughters baby on the way, but I worry a lot about them and my wife, the impact on them and hopefully as I come through this the impact reduces and they along with me can start to relax and look forward to these great events 💙