Help with processing

Hi Posi 

im so sorry you’re having to deal with this and make such decisions. 
One of our other forum members Sophie66 has had recurring lichen plants associated cancer with a number of serious operations as a result. She might pop on soon. 
There is a group here you might find helpful 

community.macmillan.org.uk/.../living-with-incurable-cancer-forum

Hi Posi I was just going to say the same amnsure Lyn aka Sophie66 will pop in. She’s in Adelaide so eill be asleep at mjnute. She’s had 3 major ops  snd still living an active life. 
Youre probably in a whirlwind st moment trying an accept ehst yiuve bern told. 
hugs Hazel 

Hi Posi

I am so sorry to hear about your ongoing battle with lichen planus. 3 major ops in one year is really hard to manage and now the possibility of a 4th. What were the 3 ops you already had? The reason I ask is that I too have had lichen planus since my mid 40's and was told that there was only a slim chance of it developing into cancer. Unfortunately we are the unlucky ones where that is exactly what happened. This resulted in jaw cancer for me with my first op a partial mandibulectomy in 2013 with radiotherapy and then in 2019 a left maxillectomy and more radiotherapy. Then in 2021 more cancer and a right maxillectomy. I then had reconstructive surgery in 2023 and have an upper set of dentures attached to my cheekbones using implants to hold it in place. It has significantly affected my eating and I can only manage very soft food but mainly puree.There is always a chance of more cancer occurring but currently I have none.I have found over time that I have become accepting of the situation and am living my life quite happily. I am not worrying about the possibilities of future cancers as no one knows what might happen. I am now 70 and am ever thankful to my lovely surgeon who keeps me going.

I also found the change to my appearance initially difficult particularly when I had no upper jaw and had to wait a year for the reconstruction. I am much happier with my appearance now and feel much less embarrassed as it is 90% improved. There are some  minor issues with speech as I have trouble making some sounds that involve getting my lips together as they do not meet properly but work my way around that. I have  had to adapt with eating and normally take my own food with me when I go out and this works out fine. I am now able to do nearly everything I was doing before and I am very happy with that.

Making decisions about your future treatment options is difficult. With my second diagnosis when I was 64 I discussed with my surgeon in great length how things would progress if I didn't have  the op. It did not sound very appealing to me and I decided that I had more life I wanted to live so decided to go ahead with the op. I am so glad I did as my life has been extended by 10 years now and it is amazing what you can pack in during that time. The chance of 30-40% of living beyond 5 years still sounds O.K. as you are fit and only 63 and could still get a lot more out of life.No one knows what the future will bring so put the  possible time frame out of your mind.It takes time to adapt to some possible eating and speech changes but depending to what extent this can be overcome. It is difficult to weigh up the pros and cons and sometimes you just have to bite the bullet and then make the outcome work for you even if it isn't ideal. Acceptance comes over time and it is early days yet for you.

I do wish you all the best at this difficult time.

Lyn

Lyn. Thanks so much for joining this difficult conversation. Bless you. Your help is immeasurable xx

Hi again Posi

Sorry when I said that living beyond 5 years still sounds O.K. Of course it is not O.K. but what I meant was that no matter what the medical people say no one really knows and you can waste too much time worrying about it when you could be getting on with life.

Lyn

Thanks for your kind reply, I didn’t object to that. I will answer you more fully tomorrow. Best Wishesx 

Hi Lyn As Dani has  said thank you ,you have a brill way with explains things. EnjiynSaturday and tell Terry not to go overboard with Christmas deco !!!!!

hugs H 

Hi Dani

No problem I am always happy to help.

Lyn

Hi Hazel

Terry always goes 200% with the decorations. We have so many stored away that he gets out every Christmas. He doesn't want to put out the same ones every year so he has a rotation. He is a retired drama teacher so always made the most amazing sets for the plays he produced. This is just an extension for him. We have the grandkids this weekend so are making ginger bread houses tomorrow so busy, busy. We love every moment of it.

You have a great weekend too.

Lyn

x

Sophie66 said:

He is a retired drama teacher

Ah… I have one of those. 
www.ramsgateradio.com/ifthebullwontcome