Maxillectomy Surgery

Hi I remembered a  a post from earlier this may help you and yiur husband 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/213359/sinus-cancer-and-disfigurement-9-years-later/1549668#1549668

hooe this post can help,you  my cancer was tonsil cancer so sorry can’t help directly 

Hazel. X  

HI Gingernut

Welcome to the forum but  very sorry to read about your husband's maxillectomy and loss of his eye.  I had a hemi maxillectomy in 2009 which resulted in surgery on my right upper maxilla, palate and loss of six  upper teeth and further visible surgery. Mine too started with a bit of toothache, this was six months prior then turned into a lump.  I was quickly referred to the hospital and then things moved very quickly. I found it difficult to come to terms with, it was such a lot to get used to and a new way of life. Support is so important for both you and your husband. Sharing your concerns with others that have been through similar experiences will be invaluable to you both.

The people on this forum are very friendly and supportive and  will help if they can.

Best wishes 

Nicky

Hi Gingernut

I am so sorry to hear about your husband’s unexpected surgery and the consequent loss of one of his eyes. It must be very difficult for both of you to come to terms with. When you have been healthy and these things come out of the blue it can be quite devastating. Coming to terms with a new life takes some time and it is early days yet so hang in there.

I had a right maxillectomy in 2019 and then had to have a left one 7 weeks ago. Consequently I now no longer have any teeth in my upper jaw and part of my upper jaw was removed.  I had a skin graft to cover the hole in my palate with the second maxillectomy. With my first maxillectomy I had an obturator which covered the hole in my palate with teeth attached. This worked quite well for me as I had the teeth straight away however, eating was quite difficult even with the teeth and I had to eat puree. Coming to terms with no longer being able to eat solid food took a while but I got there in the end.

Now with the second maxillectomy the obturator is no longer an option and I am currently waiting on reconstructive surgery as my face has drooped. As part of the reconstructive surgery I am going to have teeth attached to a metal rod.  This should make my face look nearly normal (I hope) although I still may only be able to eat puree.

I have been on this path quite a bit longer than you and your husband and I know how difficult it can be but it’s amazing how time helps especially with the support of family, this forum and a dedicated health team. I had some really down days at times but now am feeling much more positive and accepting about my situation.

Don’t feel you have to tough it out. Come on this forum for a rant, seek counseling from Macmillans, talk to your doctor about a short course of antidepressants if things get too hard.

Wishing you and your husband all the best during his recovery.

Lyn

Hi Nicky

Thanks for sharing - to begin with it seems like no-one else could possibly be going through anything like this but of course its only because its new to us - I think I am the one finding it most difficult to accept my husband has dealt with it amazingly so far!

Hi Lyn

Thanks for sharing how awful for you that you had to deal with matxillectomy not once but twice life can be so unfair. I admire the fact that you feel positive and accepting I realise its the only way to be but its still very difficult.

My husband had a skin graft flap in the roof of his mouth and he is missing some teeth but I am not sure exactly what he will be offered regarding dentures or implants - obviously he has to recover from his recent surgery and I am guessing will have to wait until after radiotherapy?

Thanks you for wishing us all the best the support of everybody does help especially when I have those 'why us' moments - why should anybody suffer x

Hi Gingernut

I understand at first it will feel like this and things can be very hard to get our heads around. With time and support it gets easier. When it is the early days of this and all that goes with a cancer diagnosis, it can be the most difficult and traumatic. We all understand that it is not only us  (the one with cancer) but our nearest and dearest who go through it with us too.  There is the mcmillan line that you can call and speak to someone, if this is something you feel you could do. We are here too if we can help. As Lyn writes get all the support you can.

If you need to ask for any advice and we can help with our experiences we have had that may help you and your husband  please ask. The people on this kind friendly forum will help  support you and your partner through when we can. Although head and neck cancers can be very variable we still can have similar things going on through our treatments and experiences.

Best wishes

Nicky

Hi Gingernut

It is good to hear that your husband is managing fairly well after the surgery. However it can be just as hard for those close to the person who has the cancer as it is for the cancer sufferer.

My husband was always supportive and tried to be stoic but he had a hard time accepting my diagnosis.  It affected his life as well as mine. You don’t consider that your life can be changed in an instant and that the predictability of where you thought you were going is no longer there.

As I mentioned before it does take time to adjust.

Radiotherapy can be a challenge but come onto the forum and ask questions as most of us have had it and can give helpful tips.

All the best

Lyn

Sophie66 said:

You don’t consider that your life can be changed in an instant and that the predictability of where you thought you were going is no longer there.

Hi Lyn

You do have such a brilliant way with words. That encapsulates cancer, doesn't it? More so than any other disease yet there are worse ways to die.

I think of you every day and how you have managed over the years...still you're here with wise words.

It must be autumn time with you. Here, the birds are nesting and spring is really in the air. I think each season as it appears is my favourite one...we get a different perspective on life don't we.

I hope you are recovering bit by bit and enjoying the family. Hugs xxxxx

Hi Lynn so true my John was the same as your Terry stoic.He just got in with it only real comment he ever made was what has we done to deserve this just has he had retired and we were getting in with next chapter of our lives. But 3.5 years later here we all are getting in with living.

Hugs to yiu and your family from mine and all of us in here 

Hazel xx

Thanks for this