I'm living with untreatable cancer in my sinuses. The original cancer was in my mouth and was removed by surgery in 2011, but returned in 2015. Since its return, my left eye has become increasingly bulgy and is now useless... it will be removed by surgery in the near future (hopefully early November). The left side of my face is about 1cm forward of the right side and is swollen by the cancer which has gone right through the cheek bone (the bone has gone).
All of this means the left side of my face is quite alien to me. When I see myself in a mirrorr, that side of my face simply does not look like it's part of me.
I just watched a Macmillan YouTube video about people coping with hair loss (https://youtu.be/SZzGJBDEfZY) and it struck me how vast the difference is between that and what I am living with. In my case the damage is permanent and progressively worse, yet I don't feel that there is any substantial support for me in terms of the emotional impact of becoming disfigured by cancer. I can't wear wig or a bandana to hide my face and it doesn't look cool like, for some, a shaved head.
When I visited the Head & Neck Clinic at the hospital's cancer centre to have my case reviewed and determine the best options for palliative surgery (debulking), there was very little support for me as a person facing radical changes in my appearance.
Is this a common experience for others with similar cancer stories?
Tom, The Singing Biker
Keep Calm and Play the Ukulele
i am sorry to hear about what your going though. I feel lucky to have a situation where I didn’t end up with a disfigament like your discribing. I did however meet a gentleman who had a situation where the cancer had got into the bone in his neck and face. Of course the bulging neck could be hidden by a shaf but he couldn’t hide his face. He spent along time tells telling me that there wasn’t much that could be done for his face except having cosmetic surgery done but in his area you have to go private to have it done. I do feel that this all needs to be highlighted and I am glad you have because maybe there is somewhere it could be done for you and others. I feel there is still along to go before there is better provision for treating cancer, some cancers have been widely mentioned and treatments for them have improved yet others are a very long way to go yet. I really wish I could find an answer to your question, because it upsets me to learn about this.
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Thank you GBear.
There does seem to be a lack of treatment and cosmetic options for my kind of cancer situation.
I'm sorry it upsets you and others but I hope it helps, in a way, to be open about hese things.
I'm not sure what to say. I did lose my hair with cancer treatment but, as you say, it all came back. I also felt it was really the least of my worries and felt quite cross with friends who could not see past this. I think it is something that women dread and as a consequence there has been a lot of movement by women to get support. There are wigs available on the NHS, hairdressers who are trained to support women going through cancer-treatment related hair loss, make up workshops, You Tube videos.....and on. Thank goodness it is now so normalised that I felt very little embarrassment going out bald, with a head scarf or straw hat. I was even pictured in full chemo hairless glory in the Guardian newspaper at one point and the sky didn't even threaten to fall in.
But the kind of surgery and changes you face are something very different. I do remember a story my sister told me. She works for the information department of a major breast care charity and one member of her team had tried to call breast cancer the "cruellest cancer". This team member was stepped on firmly by the clinical nurse specialists who reviewed this. They told her that she had simply no idea - and highlighted the kind of disfigurement that you are going through as an example of a cruel cancer.
My instinct to fix things is about to kick in. Whereabouts are you geographically? I know some areas have specific Macmillan head and neck cancer support groups. I think Brighton has a good one. Check out with your local cancer centre. Are you aware of Changing Faces? It is a charity set up to support people with facial disfigurement, however one arrives at it. I interviewed the chief executive James Partridge years ago and he is wonderful. His thesis is that you can't change the world, but you can change how people with facial disfigurement meet the world. He had the most direct look and I can honestly say that within five minutes of meeting him I forgot about his face and just saw the personality he projected so powerfully.
Turns out I did have quite a lot to say. One more thing. I am so sorry you have to go through this. I think it is awful that there is so little support for what must be a massive trauma and that it seems you are going to have to take control yourself. I hope you can find the right people to talk to , whether that's through your local cancer centre, here in the community or Changing Faces or maybe even at the local hospice. I hope the surgery goes well and that you meet skilful doctors, kind nurses and get lots of TLC.
With much love
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Brighton is my local hospital (combined with Haywards Heath), although I live about 10 miles to the north. I'll look into the head & neck support they offer. I am in fairly regular touch with a Macmillan head & neck nurse, but she hasn't mentioned a support group.... perhaps I'm putting on too much of a bold front.
And I'll look into Changing Faces.
I'm thankful I have some dear friends at choir who are very supportive and loving.
Thanks for the info and for caring.
I am glad you have mentioned it, because i Feel it’s very important and everyone needs to have some hope and reasurance in life. I hope you can get the support ok.
Hi Tom, I have incurable cancer in the lung, when I read your account of your facial disfigurement, I was shocked that you haven't been offered cosmetic surgery. Some people get nose jobs, or corrective surgery for boob jobs that have been done privately and gone wrong, and then the NHS often are called upon to put it right, so I think that surgery wherever possible should be offered to people in your situation who have suffered facial disfigurement due to cancer as a matter of course. The attitude of some people is that you should be glad to be alive, regardless of the after effects of cancer treatment, yes, we are, but we still have to live with the trauma, and the effect it has on our lives. I lost my hair twice due to cancer treatment, but as you said it grows back, but the first time it happened it was traumatic, as it was a constant reminder of the cancer every time I looked in the mirror, so I can understand how you feel to a certain degree, but the difference is that for you this new look is not going to change, unless the NHS make cosmetic surgery available to people who need it, like yourself, instead of providing vain people with unnecessary surgery, just to enhance their looks. Perhaps a campaign might highlight the need for this. What really counts though, is what's on the inside, not what you look like, which makes a person who they are. I wish you all the best and hope that you manage to get the surgery you need. Sue xx
To be honest, I'm not sure I really want cosmetic surgery... the damage caused by the cancer is too extensive, it seems beyond hope to restore my face to anything like it was.
I'm told the skin of my face may be lost if the cancer is removed because the blood suppply to the skin now comes from the cancer itself. That would mean skin grafts from other areas of my body. I don't like what I've been shown of other people's outcomes.
For me, right now, it's more of an emotional issue. How to deal with the changes in my appearance and the dread I feel for what I might look like six months from now, if I live that long. My prognosis is uncertain (it's the nature of the cancer I have) and that's another reason not to have major surgery with a corresponging long recovery time. Paliative surgery with minimal recovery time... the eye removal fits that category, with recovery of a few weeks or so.
It just seems that facial disfigurement isn't on the radar of cancer support organisations or, if it is, it doesn't get the attention it deserves... maybe it's just not common enough... there's only so much resource available.
Did we correspond about choirs some months ago? I do hope I've remembered right. There's been a fascinating programme on radio 4 about communal singing for the last few weeks. It was on today at about 9am. Or maybe 9.30. As a singer I've enjoyed the series.
I had a bit of a rootle around and found this link to the Brighton head and neck cancer group. I've no idea if it's still active or what - but here you go anyway.
If you fancy a good rant in a safe place, I can recommend the living with incurable cancer group. There's some really nice and funny people over there.
Keep singing xxx
Hi Daloni. Yes I think we did talk about choirs and singing a while back :-)
I found the BBC Radio 4 programme you mentioned, "Choral History of Britain", available for over a year on iPlayer. Definitely will listen and follow further episodes. http://www.bbc.co.uk/programmes/b096kyrb/episodes/player
And thanks for the link to the head & neck support group. I think I may have seen it, after all, but at the time I didn't feel the need... it would have been before my face started changing noticeably. Maybe time to get in touch with the group.
I was a member of the living with incurable cancer group for a while but dropped out... it didn't really seem to help me, personally. Again, mabye it's something I should return to.
Aha! I do still have a brain :-)
You do what's right for you at the time that's right for you. I only share what's been good for me.
Right. Off to practice Mozart's Mass in C. Tricky
Hi Tom, my prognosis is also uncertain, but I carry on as normal, as the time I have left is for living, not worrying about the future, I found counselling a great help, the first time round, and this is the 3rd time for me, but I'm still here! If other people have a problem with your appearance, sod them, that's their problem, not yours. As for your feelings about your appearance, you might find that counselling will help, also meeting and talking with others in a group, who are in the same boat as you, may help too. Remember, that what you look like is not who you are, people can be ignorant and rude, but do they matter? No they dont! Take care and stay strong, Sue xx
Hi Tom, just wanted to say, best of luck with your forthcoming surgery, I also sketch but in pencil, find this relaxing and get so engrossed in it, I forget about everything else, it's good to have a distraction, haven't got a motorbike though, but did used to have a moped for work, a Honda Camino, only used to go 50 mph and that was pushing it! If I went through a puddle, it used to conk out, so had to walk with it until it had dried out, had some laughs on it though. Borrowed a helmet from my sisters boyfriend until I could afford to buy one, it was one with a chin strap, all was ok until a gust of wind caught it and i ended up with it on my back and the chin strap was around my neck, some of my work colleagues were travelling behind me in a car and witnessed the whole thing. Took me a while to live that down! Sue xx
it is not always so easy to tell people to sod off its got to affect you in some way anyway good luck with you future surgery
I am sorry to hear about this. I know cancer research and treatment has come along way but clearly there is still more that can be done. You sound such a strong person and that’s your biggest strength. coming on to this forum is one of the biggest challenge that you have overcome, it’s not easy to deal with what your going though nor to express it but I do hope that speaking out is at least removing some of the emotions your feeling. I know from my own personal feelings of dealing with cancer I got a lot of support knowing I was able to share my experiences which were to me were life changing but not in the same way as yourself. But please remember that we as a community will support you as much as possible, I do not really experienced facial disfigurement but it doesn’t mean that I am not hear, even if only a sounding board.
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