Unbelievable

Hi posi. I have no experience of what you are going through but I thought I would welcome you to the group  anyway. 
Waiting for treatment is awful and it this time of year particularly it must be extra hard. Do see your GP if you are finding it difficult to sleep 

Meanwhile, have a look at Lyn’s profile. She has been through something similar. She might pop on if she’s around to add her wise words. Just click on her name here Sophie66 

Also you can search lichen planus in the search function at the top of the page 

Best wishes 

Hi Posi.  Can’t really add to Danis  comments but do pop on to Lyns profile aka @Sophie66 she is in her 3rd op for various jaw cancers 

There is still a good life to be had after treatment I was 61 when diagnosed 4 years ago now happily living my life. 
Keep on here everyone will try to help.

Hazel xx

Hi Posi

I am so sorry to hear that the lichen planus has progressed to squamous cell cancer. We are the unlucky ones as the statistics say that this is relatively uncommon.

I had lichen planus from my mid forties with my mouth becoming quite sore and ulcerated on a regular basis. When I was 59 I had a partial mandibulctomy (removal of part of my right lower jaw) followed by radiotherapy as the lichen planus had progressed like yours to squamous cell cancer.

I am a non smoker and non drinker eat healthily and am reasonably fit so it came out of the blue.

I recovered well from this op and continued to live my life normally until 6 years later when it raised its head again and then again 3 years later so needed 2 more ops.

Unfortunately our condition can only be managed and not cured. My surgeon has been wonderful and is ever vigilant so I have every confidence in him.

It is an unknown whether lichen planus will become cancerous again, it may it may not. With luck you may only need the one op and that will be the end of it.

I decided that it would not hold me back from living my life and I would take it as it came. There’s no point living your life in fear. I am 69 now and my surgeon has kept me going for 10 years and I haven’t look back.

I have been on some great holidays, have 5 lovely grandchildren, do volunteer work, go to a weekly exercise group and am happy and living a fulfilled life. I don’t worry too much about the future as no one can tell what that might bring.

I’m looking forward to another great Christmas with the family and am thankful for every day.

It’s definitely not the end of the road. Have confidence in your medical team they will be there for you every step of the way. Take it one day at a time.

Lyn

Thanks so much for your reply Lyn and sharing your experiences. Since I wrote  a two days ago, things have moved on and I have more biopsies planned  under anaesthetic  in a week and then an op early January. You sound a very positive person and I hope I can be like that soon. I had LP since my mid 30s vulval then spread to mouth about 15 years ago. I didn't worry about cancer because I knew the incidence was low. I am hoping I wont lose too much of my tongue. I have now met my surgeon who seems very good, she is prepared to do 12- 14 hour op and reconstruction with bone from my hip. I really am finding it very hard to contemplate although it is very imminent. I am dreading the feeding tube both after biopsies and for weeks after operation but trying not to think too much. I dont know if you are prepared to share how you felt after the ops. I want to be strong but I am such a wimp!

Thanks Beesuit, I found Lyn's comments helpful. I have been advised to take sleeping pills up until my Op but I still wake up horribly early! I had just had a BUPA counselling session and am doing yoga and art to try and keep calm. Not long till my 12 hour Op (if not cancelled) but I'm afraid I'm very panicky, even though I know it wont do me any good! 

Posi said:

I am dreading the feeding tube

Don’t. A feeding tube is no big deal, really. You get used to them and it’s nit for long. 
I had a nasogastric tube in for 8 weeks. It saved my life and in the end I hardly noticed it. 
Others have had a PEG or RIG and I’m sure somebody will be along soon to say how they felt with theirs. 

Hello. Try to visualise a feeding tube as your ally. As much as I hated mine I also knew it was keeping me alive from week 4 of treatment  when I could not eat orally anymore. You soon get into the routine of using it, flushing it, cleaning it…. I had a PEG & used it for feeding, hydration & meds. It takes away the pressure of eating & gives you peace of mind that you are getting all the calories you need. I hooked up to a  little pump each night so I was free in the day to rest & recuperate from treatment. I had it fitted in Feb & removed in June. 

Blod said:

I hooked up to a  little pump each night so I was free in the day to rest & recuperate from treatment.

Absolutely 

That’s exactly what I did too. I could play with different foods in the day without worrying I was  eating enough to survive. 

Hi Posi

Yes it is a long op put it is over in a flash from your point of view. No sooner  was I under than I was waking up. The poor surgeons have all the hard work.

You sound as though you are as prepared as you can be. The relaxation exercises really help I found. The waiting for the op is the worst but all you can do is try and keep your mind as busy as possible.

You wake up in intensive care with lots of tubes in you (naso gastric tube, catheter, tracheotomy tube) but they gradually get removed and all but the naso gastric tube were taken out for me before I left intensive care. I had a temporary tracheotomy but that was taken out before I left ICU. You might not be having this. If you have one be prepared to use hand signals to get your requests over. I also used a pen and paper. The staff in ICU are incredible and very attentive and looked after me amazingly.

The physio comes in the day after surgery and starts getting you out of bed and walking. I found this a bit hard as I was fairly zonked out from the anaesthetic but decided that I needed to get moving to speed my recovery so pushed through. The physio gives you exercises to do and I used to sit out of bed to do them. I tried to get out of bed as much as possible and this helped. I did keep dropping off to sleep for a while courtesy of the anaesthetic but this passes. It can be rather boring in ICU so take your phone, get the Audible ap or something to help pass the time. I was in ICU for 6 days for each of my ops and in hospital for another 6.

The speech pathologist and dietician visit you when you are on the ward and starts working on eating. I made sure I walked as much as possible to start getting my stamina back. With the first 2 ops they took the naso gastric tube out before I left hospital. The last op the naso gastric tube was left in for a week after I left hospital but they taught me how to manage it and it was no problem. The district nurse took it out after I had been back to the hospital to have my eating assessed by the speech pathologist.

Removal of all these tubes was completely painless. I just closed my eyes and did not even know it had happened.

I did not have any pain associated with the surgeries. I found the radiotherapy the most difficult and needed to take painkillers while having that.

It does take a while to get back on your feet after the op. You can’t push yourself. Initially getting out of bed before midday was a challenge. However over time I felt better and better and found short walks helped. Don’t overdo it initially though. I then found doing small tasks around the house helped me to get going again. It does knock your stamina for a while but it eventually returns.

I can now do everything I used to do before my ops.

There were up and downs and I did have periods of feeling demoralized and there were a few tears. I found talking to my surgeon really helped. He was so supportive. I was offered a short course of antidepressants but found I managed O.K. without and after time got the spring back in my step.The Macmillan forum has also helped me a lot with info and support.

It is a big change to your life so it is only natural to feel a bit down for a while. However with time I have adjusted to the changes and am doing really well now.

Sorry this has turned into an essay and hope this is not too much info.

Sending best wishes for the op. You can do this.

Lyn

xx

It's not too much info at all. Knowing how others have coped is an inspiration. I can still see the consultant's face on Friday, saying how bad it all was. Back in August this year I had sepsis and almost died from kidney failure. I considered myself fortunate to come back from that yet here I am again facing another, even worse disease. Obviously 2022 isn't my year and now 2023 is looking grim too. There are so many strong people here. I hope I can be too. xx