Mouth cancer

Hi ,im sorry i cant answer your question but i would like to say you are so brave coming through it all i have just had the all clear for tongue cancer and it was a struggle but compared to what you have been through it seems like nothing and after reading your post i feel so lucky to be feeling ok and being able to live a normal life which is different from before my diagnosis but still good .Im sure someone on here will be able to give you some answers but i want to wish you all the best for the future .

Thank you so much for your reply and kind words every journey is different and at different levels.

It's just really hard to lose half of your face and jaw and try to go back to normality.

 hopefully time will be a healer.

Kind regards Mel 

Hi mel. Our other community champ chris2012  has had significant change to his face and is living well. Hopefully he will be along soon with some words

We also have a member Lyn Sophie66  Who has had three bouts of cancer and three significant ops plus two lots of radiotherapy. She lives in Australia so is likely asleep but she comes on to the group every day usually

When I had my operation they did ask if I would do a documentary  but I said no as it was to intrusive as I was having such complex and life changing surgery it was to upsetting and I never really had a chance to think about how I would look or feel after, just had to be done to save my life.

Which I am grateful.

I am talking to a therapist about my journey and they said it would be hard and to take baby steps just because of the extend of surgery I have had.

Thanks again for your reply it's lovely to get feedback and opportunity to hear about other people's journeys and how they cope

Xmel

Hi Mel. You have been through such a lot and congratulations on now being cancer free. However it does come at a significant cost. While you are going through treatment you just put your head down and get on with it but it is the living afterwards that can present ongoing issues that are hard to manage. My issues pale into insignificance after reading yours. I have an extensive history of jaw cancer starting in 2013 when I had a partial mandibulectomy and radiotherapy when I was 59. Then in 2019 I had another occurrence and had a left maxillectomy and more radiotherapy. Another occurrence in 2022 when I had a right maxillectomy and graft to cover the hole in the roof of my mouth. I was unable to have an upper jaw reconstruction because of a high chance of failure so instead in 2023 had a titanium bracket attached to implant posts in my cheek bones that a denture attaches to. I am fortunate as my facial appearance is only slightly altered. I have no upper lip so my lips do not meet together and I have a slight droop on the right side of my mouth. My speech now sounds like I have had a cleft palate repair and I can only eat puree and drink thickened fluids. Having said all that I still have a good quality of life and travel, go out for meals with family and friends, volunteer at my local library and do enjoy my life. 

I have found over time that I have problem solved my way through most issues and come up with ways of managing most of them. I do not eat when I go out but enjoy the social interaction instead. I eat before I go out as there is normally nothing on the menu that I can manage and I do make quite a mess when I eat so too embarrassing to eat in front of others. I go on holidays where I can self cater so I do not have to worry about food and I carry food for the day with me when I am traveling. When someone finds it hard to understand what I am saying I use a different word and have at times resorted to writing the word so they can read it. 

I had a bit of a downer while waiting for the op to put in the bracket in 2023 as I felt like I was marking time with my life.  I then evaluated what I could manage that I would enjoy and would help me get on with life. I decided to join an exercise group and start volunteering at the library. That was a big step for me. At that stage I used to wear a mask as I felt embarrassed about how I looked but had decided that I would stop using the mask as people would just have to accept me as I was. 

Getting on with life after such significant ops is an ongoing journey. There are daily challenges and I do feel sad to have lost the person I used to be pre cancer. I have a different life now but it is still a good one.

Best wishes to you for your ongoing journey. 

Lyn

Hi Lyn your story is truly remarkable and you have been yourself through alot ,like you I worry about the chance of cancer recurring and your life is consumed with operation dates cancellations and so on .

I to have had two skin flaps one taken from my back which is now covering my face from below my eye to the base of my chin and neck also around my lip. They also used  my fibia bone to replace my right side jaw and had a plate to hold it together and with losing my soft lower pallet they have used skin from my leg to cover it attached to the base of tongue.

It is truly amazing how they work out what skin to use and how it works.

They have managed to make me a  top denture with 8 teeth so I have a sensation of feeling the teeth in my mouth unfortunately I cannot have any lower dentures because of radiotherapy so like you I eat sloppy food and ensure drinks.

I have a long way to go with my appearance and trying to except the new me but I have the most special partner who is my rock and is there for me.

X Mel

Hi Mel. We are both so lucky to have wonderful partners. It is a big change for them too. My husband and I used to enjoy going out for a coffee and sometimes a meal together. It was a great time to chat. Now when we go out he says he feels guilty when he eats something as i am unable to. I sometimes drink a thickened hot chocolate (I take thickener with me) but it can be quite a mess still so I don't always do it. That special camaraderie together is not quite the same anymore. My husband used to bring me a cup of tea in bed when we woke up and we would sit and chat. That is no longer possible as I can no longer tolerate tea since my radiotherapy. Lots of changes for both of us. When I have said to him that I am not the same anymore he challenges me and says that I am still the same to him. Got to love him. 

Lyn

That is so weird I hate tea and coffee and can only drink milk or fruit water maybe lemonade yes , when I eat a meal I tend to look in a mirror to make sure I get it in but it always ends up on my top or running down my chin so I know exactly what you go through with eating for me drinking as well it's hard to keep lips together and stop it from running down my face , I hope now and again I can keep InTouch with you to see how you are and hear more stories of your life it's so nice to speak to someone who knows what it like to go through the kinds of surgery we have been through.

Very best and take care Lyn

From me and my partner Natalie 

On reading our stories they are very similar Lyn your journey happened in stages mine happened all in one day I'm really lucky that you have contacted me.

Can I ask at the moment I wear I mask because of the changes to my face and not yet comfortable to take it off

How did you manage to have the confidence to remove the mask if you don't mind me asking Lyn.

X mel

Hi Mel. I had got to the point where I had decided before the reconstruction surgery that I would have to stop wearing the mask and people would have to accept me how I looked. The date of my reconstruction surgery coincided with this decision so I didn't get started. 

My plan was to initially start leaving the mask off when I went to the shops. Mostly people out there don't look too hard at you.I was also going to start leaving the mask off when I was volunteering at the library. I was going to build on that as my confidence improved. However I did not have the opportunity to do this as my surgery came up.

I was waiting a year for my surgery so felt I was in limbo so decided that I needed to move forward in the mask wearing arena. People look more at you wearing a mask so I thought without it people would not look as much. Mostly people are just curious but are too polite to comment in my experience although this happens occasionally.  Even now I get the very occasional comment and then I tell them that I have had jaw cancer although it is none of their business but a good opportunity to educate them.

I got some comments when I joined a friendship group about my inability to eat in public as their meetings were always held over a meal. After I had told one or two that I couldn't eat as I could not chew because of past surgeries on my jaw they stopped asking. I didn't want to fall into their perception of a victim so did not tell them too much as I had challenged myself to join a group with people I did not know to improve my confidence. In the end I did tell the group about my experience with jaw cancer as I got to know them better. 

It takes small steps to achieve your goal. Work out for yourself what small steps you can take to improve your confidence and then build on them. It's an ongoing journey. 

Lyn

x