Did you know that it’s Men’s Health Awareness Week 14th - 20th June 2021?
The recent Macmillan campaign ‘Tell Us The Score’ explained that men represent 51% of people diagnosed with cancer, but that only 37% of the calls to the Macmillan Support Line come from men. Similarly, members of the Community are less likely to be men. This means that men are missing out and aren’t asking for, or getting, the essential support they need from us.
We want to encourage men to start opening up about cancer and ask for support if you need it. You might worry about how your diagnosis will affect your loved ones. You may have questions about your rights at work, your symptoms, or your money worries. Or you might want someone to talk to, even though you feel under pressure to ‘man up’ and stuff your emotions down.
In this Community News Blog, we’ll be talking again to Dan, who we originally met in this Community News blog from April 2021. Dan, known as 'DefiantlyDisfigured' in the Community, told us about being diagnosed with squamous cell carcinoma in the ethmoid sinus in 2012 and the challenges of living after drastic surgery and radiotherapy.
Dan decided very early on in his treatment that he didn’t want to stay quiet. He wanted to use his own experience to help others. We hope that his determination to stand up and shout out proudly will make it easier for others to talk.
We felt that Men’s Health Awareness week was a great time to share some of Dan’s words and help raise awareness for his ‘doucheit for facial cancer’ campaign. Intrigued to read more? I will hand you over to Dan now to explain in his own words.
“I was a young man in my early 30's when I discovered my watery eye was in fact the result of the cancer growing from my sinuses. My only chance to live was to have my face opened up and the eye removed for good measure.
When life knocks you down and the air drains from your lungs, take a touch, refocus, know your worth, it's just a matter of time.
Like a bomb had gone off, the news was both devastating and all silencing. If I was to be lucky to live long enough for it to matter, I would also have to live with being disfigured for the rest of my life.
I made a choice. I had to use my experience to help others.
You have to understand one thing, the face you see is different and the inside of the face is changed too
Deformity is the price to pay for some facial cancers. Living with the deformity is a different challenge. The psychological challenge some people face is crippling - I'm sure all will appreciate why. It is the physical effects which I'm focusing on: You have to understand one thing - the face you see is different and the inside of the face is too.
We all know the ear, nose and throat are all connected. What happens when all those channels are destroyed?
Chaos.
Like the broken tap without a shut off valve it keeps pouring, throughout the course of a day the fluids build up, and eventually leak out.
What I didn't know and everyone else won't really know or ever need to know is that inside your face is a network of tiny fluid filled tubes linking everything together, each with their own purpose and all with their own passages, and they don't simply stop flowing after surgery. After they are cut, the source still excretes but with nowhere to go. Like the broken tap without a shut off valve it keeps pouring, throughout the course of a day the fluids build up, and eventually leak out. They have the consistency of melted wax and the smell of pungent mushrooms (not nice ones either) These fluids also form a concrete internal crust blocking the airflow from the nose to the throat, and quickly build up creating giant strips of gritty scab like snot which can slowly slide down the back of the throat causing a gag reflex, and some extreme cases a choking hazard. It is grim and never ending.
There is no current cure, but there is a way to relieve it.
Douche-ing.
The douche bottle is used to squirt water up the nose or in the mouth to dislodge the crusting. I'm afraid it is as simple as that. It takes practice, it is a violent amount of power needed, so it doesn't tickle, it is uncomfortable and it will sound like you are drowning. I will remind you of something I said a little earlier " I had to use my experience to help others" and so what I did was to create a challenge for charity, a bit like the ice bucket charity, but with a twist... the water goes up, not down!
I created the 'Doucheit for Facial Cancer Campaign' a few years ago, including a Youtube video and website with instructions with the sole purpose of not only raising awareness, but also to highlight this unspoken problem to healthcare professionals who may be able to provide new solutions for people affected, and also to develop surgical techniques to lessen the problem in future.
There is still a reality that when I am old or simply unable to douche that this problem will be enough for me to choke to death, drowned in my own snot.
So please if you are a "Doucher" then please do get in touch through the Community cancer forum, or through my website. I’d love as many people as possible to share your experience and your top tips.
Tips from Dan
DONT WORRY if you are recommended to use a douche bottle or sinus rinse. You may have be recommended to use a nasal flush, or douche bottle to alleviate a whole range of problems related to the nose and sinuses.
The most common cause is sinus infections, but our Doucheit for facial cancer campaign is highlighting the experiences for people affected by facial cancers, particularly sinus cancers after surgery and Radiotherapy.
Radiation therapy for nasal cavity and paranasal sinus cancer can cause inflammation of the nose and sinuses. You may feel like your nose is blocked or stuffy. The mucus in the nasal cavity and paranasal sinuses may also become thick and dry. Radiation therapy may also cause narrowing of the nasal passages or bands of scar tissue, called synechiae, to form.
Talk to your healthcare team if you have problems with your nose or sinuses. They may suggest rinsing the nose with salt water and using a cotton swab coated with petroleum jelly to gently widen the nasal passage. Some people may need surgery if scar tissue completely blocks the nasal passage.
If you, like me are a believer in raising awareness by doing something a bit funny then have a go at your own video. And when it goes viral, and the world is comically splashing water in each other's faces you can share with me the satisfied feeling of knowing that WE did that!
A big thank you to Dan for sharing more of your story and inspiring others. If you'd like to get in touch with Dan, you could try tagging Defiantlydisfigured in your post on the site, or send Dan a friend request on the Online Community through his profile here.
If you’d like to read more Community News Blogs which relate to men’s health week, I’d suggest the following recent titles:
Men's Health - Let's Keep Talking
You never see it coming - Jon's Story - penile cancer
Being bodies - sex and erectile dysfunction
Simon's story - brain cancer awareness
