November is Mouth Cancer Awareness Month. A time to raise awareness and support for those affected by mouth cancers. We wanted to take the chance to highlight our Head and Neck Cancer Forum, where members can connect, share experiences, and find support from others who understand what they’re going through.
In this blog, we’re sharing insights from MikeO. He joined the Community shortly after his diagnosis and now plays an important role as one of our Community Champions, helping our team keep the Head and Neck Cancer forum safe and supportive.
When I got my first cancer diagnosis, in 2013, I found out fairly quickly that I was nothing special. Surgery (neck dissection), and radiotherapy (seven weeks) with a dash of chemo thrown in was a well-worn path. I was scared, and my family were more scared than I was, but my MDT team were just doing their "normal" nine-to-five. I held on to that thought, I left them to it, they said they'd cure me and they did.
Some people want to know the chapter and verse of what's happening to them. They want cancer staging, their HPV status, how many rads their radiotherapy will be, and survival rates. All completely understandable and a perfectly rational way of dealing with a cancer experience. If that's how you get through the day. I asked one question (not even of a consultant, it was a young junior doctor), "what do you think the outcome will be?" She said, "Complete cure" and that was enough for me, I put myself totally in their hands and just did as I was told. There was no "fighting" from me, I don't believe you can "fight" cancer.
A lovely friend explains it beautifully. "Trust your team. They do this every day and are good at it. It’s their job to fight the cancer. Your job is to look after your body and soul and stay sane. That’s one of the hardest things, to trust yourself."
I met that friend on the Macmillan online forum. Dani is one of the Community Champions in the "Head and Neck" group. We've never met "in the flesh" but I really do count her as a very close friend.
I chanced upon the Macmillan community by luck in the first instance; I was googling all sorts of scary stuff (don't do that, it's very tempting but what you find can be misleading and outdated), and the site popped up. One of the first people I "met" was a lady called Josie, who was wonderfully helpful, and then it transpired that she lived on the same very small road as my wife and I did in Glastonbury when we were first together. It felt very comforting.
There was always somebody who could answer any questions I had or put my fears into perspective. It's a priceless resource. Peer support is the best, no judgment, no questions dismissed as "silly," people understood. They totally got it because they had the t-shirt.
The community became part of my daily routine, and when my cancer returned in 2020, they were with me every step of the way again, with wonderful unconditional support. I still marvel at the fact that out of such adversity came so many positives in my life.
And here we are in 2024 and I'm "doing the dance" with cancer once again. Incurable and terminal I'm told, but my attitude is still the same. I'll keep on going until I don't, it's out of my hands again. Line from Catch-22, "I plan to live forever or die in the attempt" is my mantra. I started a course of immunotherapy a couple of weeks back, it's not a cure but it could keep the sucker at bay for a while. I'm funded for two years of it, so still being around to see what happens when it ends would be a great start.
Back to my trusty Macmillan community friends, a warm welcome as always, and then another one in my newly qualified "incurables" group. Still optimistic (always am), still loving life and will keep on loving it until it stops. Finances all sorted after much time spent on hold on the phone, so a decent level of income there to fund some fun stuff! Bring it on.
Thank you, Mike, for sharing part of your story with us. Mike is part of a wonderful group of people who support each other in the Head and neck cancer forum. If you have mouth cancer or another form of head and neck cancer, why don’t you join the forum and introduce yourself?
If you have a different type of cancer, you can click here to see a full list of forum groups dedicated to discussing various cancer types.
If you’d like to chat to someone on a call, you can make use of our Macmillan Support Line. Our Information and Support Team can help you find the support most relevant to your needs. They’re also there as a listening ear if you ever just need to say how you’re feeling.
