A Bad Year

Hi Posi 

I do hope Sophie66  pops on to help. She has had quite a few surgeries for something similar. Perhaps she can put all this into context fore you 

If you click on her name it will take you to her profile where she writes about her cancer 

Hugs 

Hi What yiur feeling is natural as Daninsay  hopefully  @Sophie66 will pop in her cancer started as lichen planus and nowshe’s in her 3 rd op. AHugs from me as well. Hazel x

Hi Posi

I do feel for you with such a short time between ops so not having time to recover properly before and looking down the gun for more. It is so life changing and It does take a while to recover from such a big op so no wonder you are feeling down. It is a tough time for you and your husband. Trust in your medical team though as they will do everything they can to get you back on the road to recovery.

I too suffer from lichen planus which has resulted in jaw cancer and have traveled a similar road to you although I have had some respite between ops so have been able to get on top of things sooner than you.

My first op was in 2013 when I had cancer in my right lower jaw at the age of 59 which resulted in a partial mandibulectomy and radiotherapy. I was lucky as I had a 6 year respite but then in 2019 had more cancer but this time in my left upper jaw resulting in a left maxillectomy and more radiotherapy. The cancer came back faster the next time and in 2022 I had to have a right maxillectomy but fortunately had my quota of radiotherapy previously so did not need more. Still have my left lower jaw at this stage. I had reconstruction surgery this year for my upper jaw and am doing fairly well since then although there are a few drawbacks. When the cancer came back in 2022 I did think about throwing it all in and discussed this with my surgeon but the alternative he outlined to me was not very appealing and I decided I did want to do more with my life so bit the bullet and went ahead with the op and I am glad that I did.

I knew all along that lichen planus cannot be cured ( maybe in time they will find a treatment) so it was always management and not cure.

Please do not despair. As I said before I have been lucky to have longer gaps between surgeries so had a chance to recover and I live a good quality of life. It does take some time to get on top of things but you will get there. Don’t worry about the bucket list at the moment because that will come again when you start to feel better.

Please tell your doctor about how down you feel as you might need a short course of antidepressants and some counseling to help you through but you will get there. I also found posting on this forum was such a help as everyone understood what I was feeling. I also found just talking about it to my surgeon really helped as he was so encouraging. He has kept me going for 10 years now and I am so grateful to him.

There is definitely a good life to be had once you recover from your ops but you will have to give it time.

I have had some great holidays between my ops, welcomed more grandchildren into my life, been part of so many family celebrations that I would have missed out on if my surgeon had not kept encouraging me.

Yes I have had to adapt to changes in my life particularly around eating but it has been worth it. I volunteer at my local library and am currently planning a big shindig for my 70^th as well as a trip to Tasmania. (I live in Australia) At the time while I was recovering from my ops it seemed that I would never feel good again and everything felt hopeless but with time things definitely did get better.

You have to hang in there and project yourself a year from now and you will be surprised how well you will do.

Thinking of you at this time and sending hugs.

Lyn

xx

Thanks Lyn that gives me hope. Enjoy your 70th do.