Dead Men Walking

In March 2021 it was with some emotion that I read Twyst's post (https://www.deadmen.co.uk/forum/showthread.php?45583-Goodbye-Dead-Men-Walking) about his ongoing battle with cancer.  Little did I know that only a few months later I would find a lump in my own throat and end up swapping treatment stories and experiences with him on Discord.  

I haven't shared my experience until now not because I would not have appreciated your emotional support, but simply because I felt I needed to be able to focus my energy on just getting through each day and the distraction of having to converse about it with multiple people would simply have been too much. When you are going through the treatment life does become a very day to day thing, how to get to this afternoon, how to I make it through to bed time, etc. Now that I am through my treatment and no longer have to do a daily commute to the Churchill hospital in Oxford I have more energy.  In the meantime thank you for allowing me the indulgence of sharing the load via this post.

My experience
In June 2021 I got a sore throat (sort of like you feel when you have a throat cold coming on) and what I thought was an unrelated earache.  This went on for a couple of weeks but the 'throat cold' never arrived and the earache remained.  I had my ear checked and they found nothing, it was perfectly healthy and had no compacted wax.   The throat continued to ache and eventually on 2 July 2021 I figured that perhaps I had a bad ulcer very far towards the rear of my mouth - and so I stuck my finger into my mouth and pushed backwards to see what I could find. As my finger went further into the back of my mouth I sensed I was getting closer to the source of the discomfort, and eventually about two inches down the back of my throat I felt a small 'tip of bullet' shaped lump sticking out of the front wall of my throat into my oesophagus.

After multiple meetings, scans and surgery to complete a biopsy I got diagnosed with a cancer in my neck/throat. The tumour was in the base of my tongue (the base is in your throat not in your mouth) and had also grown into surrounding muscle up towards the left floor of my mouth.  The cancer had also spread to a single lymph node on the left side of my neck. In medical terms the tumour was a T4 N1 M0 squamous cell carcinoma (SCC) about 4.5cm long.   And the earache?  Apparently it is a common side-effect of a neck SCC that you suffer 'referred pain' in your ear!

I was prescribed a 6 week course of chemotherapy and simultaneous radiotherapy and because of the likelihood that at some point I would struggle to swallow/eat/drink, I had to have surgery prior to treatment to get a feeding tube fitted (it's a tube that sticks out of your belly and goes direct to your stomach so that you can be hydrated and fed if you cannot eat/drink yourself).

I finished my chemo and radiotherapy on 10th December 2021. It was bloody unpleasant and not something I would wish on my worst enemy.   Much as you hope they don't, the chemo/radiotherapy side-effects eventually kicked in with gusto:  

• At various points I had little or no voice (as those playing New World might have noticed in November/December).
• Like Twyst, my beard hair stopped growing in the treated area as the radiation damages/kills the hair follicles - and trust me, a one-quarter goatee is not a cool look! I've added a photo below showing how much beard hair is AWOL and not growing!
• In mid-November the radiotherapy caused me to lose my taste of anything sweet or salty (that only leaves bitter & sour).  Food tastes of nothing and even water tastes bitter/soapy!
• Radiotherapy also damaged/killed my saliva glands, so I have 'dry mouth' and need to constantly sip water and drink liquid when eating. Apparently most people have most of their sense of taste and some saliva production return during the first 12 months after treatment - I am 4 months post treatment and desperately waiting for this to happen to some degree or another!
• At times during and after treatment I struggled to swallow and eat through the mouth (as opposed to using the feeding tube), but forced myself to eat via the mouth with the assistance of morphine and a very carefully chosen slushy/liquid diet.  Radiation ulcers took up residence in my mouth and throat - imagine not one ulcer, but everything being ulcerated.  My '4 worst days' had me taking  90 minutes to finish sipping a 200ml bottle of 'liquid meal' supplied by the hospital.
• I got an impressive radiation 'sun tan' around my neck.  Radiation dermatitis is a real thing and in the run up to and just after Christmas my skin cracked, opened up and I got a two inch wide open wound (like a garrote) around my neck.  I've added a photo below to show my neck just before the skin melted!
• Twyst mentioned the fatigue (and headaches) that radiotherapy can cause - they are not a myth and since treatment stopped in December I am sleeping anywhere and anytime.  I can literally have breakfast and then suddenly fatigue hits you and you end up going back to bed to sleep for another 4 hours!  This is now slowly improving, but it is still a factor.
• I also have fluid retention in my neck as my lymphatic system learns how to drain fluid again from the irradiated area and the radiation also caused fibrosis in my neck/shoulders for which I have daily physio exercises and a weekly 75 minute deep tissue massage (so it's not all bad!).  

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Today I am almost 4 months in to the approximately 12 month period they say it takes to recover from the chemo/radio treatment and patiently awaiting the return of taste, saliva, a beard and the ability to turn my neck side to side more than 45 degrees!

The reason for sharing my story today is twofold:

(1) I wanted to let people know that I am happy to share my experience of cancer/radiotherapy/chemo so that if you end up having any similar diagnosis/treatment then you know that you can talk to someone who has gone through a similar situation.   I personally found it hugely helpful to talk to other cancer sufferers who were able to share their experience of chemo and radiotherapy, provide tips on making things more comfortable and generally managing the mental health side of things.  If it happens to you and you feel that talking would help, then please feel free to contact me and I will do whatever I can to help.

(2) I met my consultant this morning and he said that my FDG PET CT scan showed a complete resolution of the tumours. That's as good as it gets in terms of outcomes, so this afternoon I am one greatly relieved individual with an equally relieved wife and family.  My particular cancer has an 85% five year survival rate, but 99% of the unlucky 15% are smokers who usually suffer some reoccurrence in the first two years after treatment.  As I am a non-smoker and had a very good outcome from treatment the signs are good that I will find myself in the 85% not the 15%.

If you needed proof that God has a sense of humour
I took out a large critical illness insurance policy when I was younger and because back then I had planned to retire at 55 I chose age 55 as the policy termination age. I was 55 in February 2021 and got diagnosed with cancer literally a few months after the expiry of the policy.  That sucks!

Something for the garden, sir?
Every life event has a memento. For me it's the mask they made for my radiotherapy.  They use it to bolt (I kid you not) you to the treatment table so that they know they have your neck (and the tumour) in precisely the same spot every day during the six weeks of treatment so that the radiation hits exactly what it should hit and nothing else.  At the end of the treatment you get to keep the mask.   Mine is going into my garden where it will eventually have flowers grown through it as my own personal memento of surviving an annus horribilis.

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Thank you for letting me share my experience of cancer.  Writing it has been quite cathartic and hopefully reading it will help someone cope with their own personal battle with cancer.  

I look forward to seeing some of you at the LAN next month and desperately hope that my taste returns beforehand so that I can enjoy some beers with everyone!

Thanks for sharing TL and I'm so glad you've at last had some good news

Bloody hell - glad you got through it fella and hope things continue to improve! :flirty:

Thanks for sharing all this Tl and for going out of your way to share your story in such detail. As Gunda said it’s great to hear you have some good news but sorry to hear you had to go through and are still going through the horrible effects it has on your body. Hope that taste is back so you can enjoy the lan more with the peeps that are going. Please do keep us who don’t get the chance to talk to you informed on how you are getting on …. Only if you have the time and want to of course :)

Wow TL! So glad to read that you've got some good news! If the flowers don't grow in the new garden sculpture can we roast irradiated marshmellows around it as a log burner at the next summer bbq??

Thanks for letting us know!
Cancer sucks.

Hey Paul, sorry to hear what you have gone through, but glad you are through the worst of it. Goatees were so last decade btw.....

Thanks for sharing. Hope you get well soon!

Good on you mate, I'm so happy you got that news, I'm literally welling up given I spoke to you a few times post treatment and the mother's of both myself and my wife have or are going through treatment. Neither got chemo or radiotherapy fortunately. It seems being strong as an Ox helps to handle that.

Here's to reading the followup report of how that first bite or sip feels when you can actually taste it!

Well done for sharing mate. I certainly found that talking to others always helps. So pleased that there is a light for you at the end of your cancer journey.

Thanks for Sharing TL.

Really glad to hear you got through the treatment and are in recovery.

Cancer sucks so much. Thanks for sharing your journey and I sincerly hope noone needs to take you up on your offer of support.

Much love J.

Wishing you all the best for a speedy recovery and fingers crossed it's all gone for good.
Thanks for the update, a brave and helpful thing.

Wishing you all the best Paul and a good recovery! Greetings, Pete

Cancer most definitely sucks mate.
So glad to hear that you have come through the other side and are recovering well.

Can't imagine how painful throat cancer must be and difficult to deal with. Eating and breathing being the most primary functions we need to do.

All the best Paul to you and your family :huggy:

Thank you for taking the time and having the courage to share your story, I feel it's good for people to do this especially as men are more likely not to visit the doctors should they suspect something is wrong.

I'm glad to hear you are on the road to recovery.

My Nan, died from lung cancer last year, smoked for a very long time but gave up after having smoked for at a guess 50 years. I still find it hard to come to terms with the fact that she is no longer here and have only visited her grave once since we was buried, sadly she was buried on my birthday and I don't really tend to like to think about her too much as it still brings sadness and doesn't feel like the whole thing is real or even happened. My Aunt died from alcoholism which I just accepted as something that would happen anyway since she didn't want/choose to be helped to overcome that, I don't mind thinking about my auntie and sometimes like to remember a few good memories I had with her like her taking me to London etc.

It's funny how grief works in many ways, I think it'll be a while yet until I am over my Nan's death since it wasn't really expected and I thought she would live forever. Growing up she was always there for myself and my brother and sister and it's nice writing this thinking about the good times and how she cooked the best meals and introduced me to liver and bacon. Funny memories like when I cook potatoes and put salt and pepper in the water it reminds me of her when I would stay there at the weekend as she would often cook meals with potatoes and having the kitchen fill with that smell.

I am happy for others to contact me should they wish to talk about these kinds of things or to generally say hi, i'm always on discord :)

Thanks for sharing - look forward to seeing the new garden arrangement at some point!