It is now 2016…
I put the key in to open the door. A scrambling of little footsteps can be heard and as I enter, a beautiful happy 4 year old races to meet me.
“Daddy, your home, You’re my best friend!” Harry jumps up for a clinching hug “Harry, your my best friend” I reply, scooping him up for a big hug.
The beautiful innocence of children is a joy to behold.
Of course Harry is the baby that was born on Christmas Day (my birthday too) and the very same baby that Sue was carrying during my surgery and treatments in 2012.
Harry’s innocent eyes have never seen me when I had 2 eyes, when I looked “normal.”
He still hasn’t asked, that day will come.
Harry is not my only child.
I have 3 boys including Harry.
Dylan is 14, Seth is 10 and Harry is 4.
Dylan and Seth are from my first marriage and will always have memories of me before my cancer, when I wasn’t disfigured.
I waited until just before my first surgery to tell them.
I sat them down, how do I tell them?
What do I tell them?
They are old enough to be aware of death.
At the ages of 10 and 6 they would have to deal with my cancer, see me be destroyed and rebuilt, knowing that cancer kills.
It was the conversation I feared the most.
They listened as I gently told them what would happen. Their young eyes and ears digesting every word.
“Are you going to die daddy?”
This is killer question, which if in this situation is the one you prepare for. I have to break it to them gently, but they had to know that dying was not an option.
“No. I have to have a big operation, they have to remove my eye, and it can never be put back, but I will be fine. I will not die or anything like that…”
They solemnly nodded.
It was tough, because inside my head I knew I couldn’t guarantee that I wouldn’t die.
The thought of not being around to see them grow up was in my head, It was screaming at me as I said the words… the very thought made me feel absolutely lost.
Their perfect beautiful faces absorbed it with innocent dignity.
I had told the white lie, and the one lie I hoped would not come back to haunt me…. you never really know…..
The great news is of course that I made it this far.
4 years done, 1 to go.
Cancer could have taken me not only literally but mentally. An acquired disfigurement affects people in some horrific ways. The psychological adjustment is too much to bear for so many, I have seen this myself in these last few years.
The fear of becoming “a monster” is a real fear for anyone who has to “decide” to have extreme facial surgery. Socialising is a big ask when you can’t look at yourself in the mirror.
My children made all my hard decisions simple.
Do what ever it takes to live.
I was beyond caring…
After my surgery and treatment I suffered from the side effects of radiotherapy. I could barely motivate myself to eat. Every day was a struggle.
But my boys (Dylan and Seth) were always there.
They were so brave, seeing their Dad go through this.
They were both at such an impressionable age, but they had to face this as much as me.
They knew me. They knew my face. They saw first hand as it happened, and they was always there to hold my hand.
Slowly but surely, I started to not cover up so much of my face, they would have to accept my face as much as Sue and I had.
But it wasn’t easy, they would get upset when I uncovered my eye, (to be expected) they would look away, ask me to cover up. I didn’t force them, but there had to be a process of desensitising.
Now, 4 years later they don’t mind at all.
Dylan and Seth are both amazing boys, who I am so proud of, they have many pictures on the walls of their bedrooms of us before my operation, happy cherished memories.
Of course Harry will never have such a photo
Harry was born in 2012 after my treatment, a gorgeous baby born at the end of an incredible year.
I got to be a part of every moment of his new born life, and then as he developed as a new baby to a smiling, bouncing boy.
I couldn’t work and so I was there, always. Our bond was so strong, he would snuggle up to me, my disfigurement meant nothing to him, love knows no boundaries.
As he grew, we was together as a family unit. What an absolutely beautiful time. I never had to disappear from his day to go to work, we were always together.
Our bond as father and son, and mother and son was shared.
I guess without my cancer I would have missed so much.
The future looks good, and I cannot wait to share it with my boys, seeing them grow, and our journey with cancer a distant memory.
Cancer affects everyone around you. Your children are the most precious things in your life.
Good times and bad, I am proud that I’m called “Dad”
Daniel Jackson 
Hi Daniel. Thank you for sharing your story. My 74 year old mother has been diagnosed with stage 4 Squamous Cell Carcinoma of the right maxillary. It has spread to other areas of the face and will require a surgery similar to the one you had. The surgeon at University of Penn said she will not be able to have teeth/dentures and he may have to take her eye. He said she will not be able to have a fake eye put in. She is very self conscious about “looking like a monster” and scaring her grandkids.
She is very anxious and in a negative place. Wondering if you would have the time to speak with her on the phone and share your experience? I hope you are doing well.
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Hey Lisa thanks for messaging me. I am sure you are all desperately worried at the moment. I am in the U.K. and health care systems are different here, but always seek a second opinion as surgical approaches do vary depending on who is doing “the job”.
What you are describing though is a basic removal without reconstruction or facility to have a prosthesis? By the sounds of it your poor Mum will lose the roof of her mouth and her eye…. it’s not unheard of..(Eric moger)
My dear friend “Christine Piff” (who is of a similar age to your mom) had something similar 40 years ago and she founded the “let’s face it” charity, I would highly recommend a call to her as she has forgotten about what most professionals know.
Assuming money is an issue with the health care options in the states (?) I highly recommend crowdfunding to raise money towards reconstruction or a prosthesis.
You are all facing a tough ride, and this is a one time show, so satisfy yourselves that the approach of the professionals is the right one, but without stating the obvious, reassure your mom that she will always be “her” and she has plenty of years in the tank, she may “feel” that she will look like a monster, but she will always be seen as a super hero.
Let’s face it have a support group on Facebook “let’s face it facial cancer and disfigurement family and friends” drop a request to join, it is a totally private group, but as I said look up Christine, she is a qualified councillor as well, so you get the best of everything by speaking with her.
Finally I am well, 6 years almost to the day of my first operation to remove the bad stuff, and I am fine. Christine is 40 years on, she’s fine too.
I hope this is okay? Love and best wishes to you all xxx
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Hi Lisa and Dan! I just found this site today, and would like to comment.
It’s an amazing experience reading about others who are dealing with body image issues. Thanks for baing your soul, Dan—I feel the very same way, and have always felt very alone in dealing with my image!
I had my left eye removed at 5 months old due to a retinoblastoma. I used a glass ocular prosthesis for a couple of years until age 5, when I developed an infection that required the prosthetic implant to be removed, and I was left with an empty orbit.
I grew up that way–used a frosted eyeglass lens on the left side up until 4 years ago when I was offered the titanium implant post/ latex prosthetic system. I just turned 66—you CAN teach an old dog new tricks! The prosthetic is amazingly realistic.
I want Lisa to know there are amazing artists in the States who specialize in restoring shape and normal appearance to facial features and other body parts by creating latex appliances (with a custom painted glass “eye”, in my case). My surgeries/prosthetic are covered by insurance. Your Mom can look almost normal, and continue to enjoy life and grandchildren! Feel free to email me if you need more specifics—hope your Mom is doing well!
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