So here is the latest update on my journey. It has been a surreal few weeks since my diagnosis, sometimes it has been hard to believe and digest because most of the time I generally feel OK, although I have noticed that my voice is becoming more hoarse again and I am also having a little trouble with eating certain food types. However, this sense of surrealism was quashed within the space of a few minutes yesterday when I was telephoned with the time and date of my operation to remove my cancer.
I like to think that I have prepared myself for what is coming; I have watched numerous videos, read pages and pages of literature, visited and bookmarked many websites and generally tried to educate myself and the rest of the family as to what we can expect in the days, months and hopefully years that will follow as a 'laryngectomee'. We have registered with various agencies to ensure that we get all necessary materials I might need and have tried to remain positive and strong throughout.
The phone call drove home exactly what we were going to face and although it wasn't a shock to get the call, in fact I have been kind of hoping for it since I learnt I was undergoing the procedure, it was a sobering thought that this was 'it'.We have been given a date when my life will change quite drastically. I will have to learn how to eat and speak in a different way to that which I have done for the past 52 years. There are lots of things I will be unable to do, for instance I won't be able to lift heavy objects and I thought about this when I got my bicycle out. Will I still be able to lift the cycle to put on the roof rack of the car? I have no idea. It's not just the physical side either, there is the psychological effect, I'm almost certain to have good and bad days. Lots of things like this are going through my mind and I won't have an answer to them until I can get back on my feet and get back to being my old (but new) self. I will still be me, just with a few nasty cells eradicated and with a bit of cartilage and tissue removed. I'll still talk, perhaps not as loudly and not as fluently as before but I will still be the same person. The challenge before me might seem formidable to begin with but it is not insurmountable, it is something I will get used to as will those around me and after a couple of months it will be the norm.
Anyway the date for my diary is 0700 hrs on the 22 September 2016
Those good people at MIOPS are at it again. Not content with providing us photographers with one of the best camera triggers on the market in the shape of the MIOPS Trigger, they have now started on their next venture to provide what they are promoting as 'The world's most versatile camera remote', the MIOPS MOBILE.
Having used the two previous incarnations of the MIOPS trigger, the first was named the Nerotrigger, (you can find some images and a write up in the blog) I have no reason to doubt their claim. If you're quick you can help the MIOPS team help build this new remote and be some of the first people to receive the new product by signing up to their Kickstarter project. I have signed up, it's too good a chance to miss. Don't hang around too long, I guarantee the pledges will be achieved is a short time.
I had an appointment at the Royal Sussex County Hospital to speak to a Speech and Language Therapist who went through what would be the plan after I have had my laryngectomy in two to three weeks time. The therapist was very good and very understanding. She was able to show me and Tina all the paraphernalia that would be attached to me and how it works and what will be necessary to keep it all in good order. She also arranged for us to meet with someone who had had the operation and he was able to explain how he dealt with the operation and how his life has changed in the three and half years since he had it done. The meeting was a mixture of education and to be honest some despondency on my part. The realisation that this was how I was going to live the rest of my life in the not to distant future was starkly portrayed to me. In actuality, after I have adapted to the change, there will not be much I will be unable to do but there is a lot of things that we all take for granted that I will still be able to do but in a different way if you like. There are other things that will be gone for ever, for instance one little thing such as 'sniffing' will be gone, I will not have the ability to draw air through my nose or mouth and I have a little trouble coming to terms with that at the moment.
One of the biggest challenges, if not the biggest, will be the psychological effect on me and my family. At the moment I am fortunate enough to be able to speak clearly, this was due to the surgeons removing a large part of the tumour on my larynx when I had my biopsy, not only making breathing easier but also leaving me able to speak normally and this could inadvertently have a negative effect as our voice is a large part of our identity; people recognise you through your voice, we have mannerisms in the way we speak and communicate and I am going to have to relearn all of this and so are those people around me. Perhaps it would have been easier for us all if that part of me was gone already. On the other hand I get to speak to everybody in a normal way for as long as possible.
However I do not intend to let this change in my life affect the way I live my life and my lifestyle, I still intend to be as active as I have been previously; walking, cycling and being out and about are big parts of my life that I will not let go of and it is these goals that help keep my sanity intact. The other big influences are family and friends and I couldn't wish for a better support network. I'm also looking forward to returning to work as soon as realistically possible, The only other sick leave I can remember taking was when I damaged my shoulder and that was just for one week.
The nicest part of the day was meeting my friend Sharon from Lewes Road Bus Garage where I used to work for a quick coffee before my appointment began and it was great to see the friendly face of Lee Perry on the bus when we came out of the hospital.
Once again, we thank everybody who has been so encouraging and supportive and who have given us the strength to remain positive for the future.
Updates to follow as and when.
So here's the update to my unintended journey that began for me on the 1st August. Today was the day that I would be finding out the results of all my tests and scans and the extent of the cancer in my throat. We have adopted a saying in the Moss House of 'Hope for the best and prepare for the worst' so in that sense we go to each of my appointments with a perhaps slightly pessimistic approach..
Today's appointment was a mixture of good news and not so good news. The good news was that my chest was clear and that the cancer was localised to my neck area, the not so good news was that the cancer has gone into some of the cartilage that surrounds my voice box and this has a big impact on the way it can be treated.
I was therefore given two options to consider. Radiotherapy on its own to attack the cancer or a laryngectomy and radiotherapy to attempt to completely eradicate it. This was just a snippet of the details of the appointment and we did discuss the options in far more depth than I can put here.
In normal circumstances the radiotherapy used to attack the cancer would be enough, however, as was explained to me, the radiotherapy is not that successful when it comes to cartilage and the prospect of the radiotherapy not being successful was quite high. If I took the route of radiotherapy only and it did not completely clear the cancer or the cancer returned I would still have to undergo an operation to remove my voice box, but due to the nature of radiotherapy and its effect on tissue, the operation would be difficult and the chances of success would reduce significantly.
The other option and the option recommended to me by my Multi Disciplinary Team was to undergo a laryngectomy and radiotherapy, the chances of success and cure are far higher and although it is a major operation there would be likely to be less complications then if I went down the other route.
Obviously the laryngectomy is an operation that has life changing implications but after chatting with my consultant and other members of the team, I was assured that once I was back on my feet and had adapted to the differences, then a normal life style was completely achievable.
And that is the decision I, along with my wife Tina, have elected to take. I will be having the op in the next 2-4 weeks with a recovery period of approximately 8 weeks thereafter and will hopefully be looking at returning to work shortly after that.
So, is the glass half full or half empty? Obviously I'm a bit pissed off and disappointed that I have to undergo this procedure, but it is what it is, I cannot change anything and I have to be pragmatic about what is best for me, my family and our future.
I'll leave you with a quote from Hubert Humphrey to ponder:
“Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left.”
Results Day Appointment
I have been given a date to discuss the results of my scans and tests on Wednesday. It's a weird feeling of relief that the results are in and trepidation of what the results will reveal.
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