Question: symptoms from buccal mucosa tumour surgery

Hi Raewyn 

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again and I'm sure a forum member will be along soon to share their experience with you.

x

Hi Raewyn 

I cant help much I’m afraid but I’ve done a search for you here https://community.macmillan.org.uk/search?q=Buccal#serpq=Buccal&serp=1&serpgroup=100

There is a very useful entry from Sophie66 

Your appointment is tomorrow so I hope you get some answers there. 
Please let us know how it goes. As you said in an earlier post, there is scant information on your cancer type. 

Thank you, and yes it’s very frustrating. I will let everyone know what the surgeon says. Someone I know mentioned trigeminal neuralgia - hoping not and it’s just temporary

So, the sum takeaway from my meeting with the surgeon is that it’s not swelling I’m feeling but a lot of fibrous scar tissue which is affecting the nerves in that area. Apparently it can be an issue with operations of this type. It could be that it will settle down as the scars start to get smaller in about 2-3 months. Overall he’s just happy I can open my mouth normally. I will have to manage the pain in the meantime with medication and get on enjoying life as much as I can. He said counselling may help and I have some lined up via MacMillan. Also will try alternative therapies - acupuncture, reiki etc. I feel a bit of a fraud complaining when it could have been a lot worse and after all I am clear of cancer. 

Thanks Raewyn 

Im glad it wasn’t what you feared but sad that you are still in pain. I have great faith in acupuncture so I hope it helps you. 

Hi Raewyn

Glad to hear that the surgeon is happy with your progress. I do hope that the pain settles down soon for you.

I have had 3 major ops for jaw cancer and 2 lots of radiotherapy so not the same cancer as you however I do have some of the effects that you have mentioned. I have ongoing numbness/change of sensation in my nose, cheeks and in some other areas of my face as well as my neck amongst other things. This is long term and is related to my ops as nerves were cut through. It is something that has slightly improved over time but will always be there for me. I have found over time that I have become used to it and it does not bother me much at all now. It is a bit annoying but does not effect my function in any way. I also have a lot of scar tissue on the inside of my cheeks that can become quite painful if overstretched. This only worries me when my prosthodontist took moulds to make my denture. I have to keep up my mouth opening exercises to prevent my mouth opening becoming worse as it is reduced as a result of the ops.

Keep up your mouth opening exercises as it is really important. It becomes much more difficult to clean your teeth and eat when your mouth opening is  less than normal although it can still be manageable.

Best wishes for your ongoing recovery.

Lyn

Thank you Lyn. Yes, at times when the pain is so debilitating you feel the treatment feels worse than the disease, but you dare not mention it as it was to keep you alive. You have to stay strong and learn to cope and adapt in time. My aim now is to keep my focus on getting as much out of life on earth as I can. It really helps to feel the support of the community on here. 

Hi Raewyn

Given time the pain will subside although it may seem interminable at the moment. It can help take your mind off the pain if you are doing something that you really enjoy and get engrossed in. The pain seems less intense then along with some good pain killers.

I know what you mean about getting as much out of life as you can. A cancer diagnosis is certainly a wake up call and makes you stop taking your life for granted.. I get real joy out of very simple things now. I love getting out in the garden and getting engrossed in a small project that changes the look of the garden. I can only do small amounts at once but it is amazing over a few days how the job gets done. Experiencing the fatigue you get from ops and radiotherapy has given me a real appreciation for the energy that I now have even though I can only do things in small doses. In fact I am getting out in the garden today as it is going to be a lovely day. I live in Australia so the weather is very nice at the moment. I am going to tackle the blackberry bush which needs a good cut back and then plan planting in my 3 raised garden beds. Makes me happy just thinking about it.

Sending you my very best wishes. You will be surprised how good you will feel in another couple of months.

Lyn

I totally get that. I’m a big grower of veg and flowers from seed with 11 raised beds at home and grateful we are now going into the growing season in the UK to keep me occupied. I used to live in Australia - such a beautiful country. Please God I can make a trip back next year. It’s so rewarding to see your seedlings grow and gives you hope for harvest to come. Good luck on your journey too, Lyn. 

Hi Raewyn

My family migrated from the U.K. when I was 10. My husband and I had a fantastic trip back to the U.K. about 7 years ago and I caught up with an old friend and a cousin that I had not seen since we were children. I loved it but definitely could not manage the weather you have. I am now so spoilt with the warmer weather we have here although at times a tad too hot. My friend tells me about wrapping her plants in fleece to keep away the frost. I don't have to do anything like that where I live. It is more keeping up the watering so plants don't die. I am really getting into drought tolerant plants now. You can get such a lovely range that have beautiful flowers.

Lyn