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"
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