My husband has had cancer of the mouth (lost upper right jaw and roof of mouth) and is now awaiting test results of another possible tumour in his nose. Have been reading your forum and felt that there were so many people who have gone through or who are going through similar situations and really feel the need to be able to let out my feelings to people who know what he is and I am going through.
Hope to hear from you.
Heather.

Hello Heather

Glad you found this forum. There are many people here who will be able to understand, support and help you and who will be here for you. Sounds as if you are both going through a dreadful time.

Thinking of you

Best wishes
Gwyn

Gwyn
Thank you for such a quick response!!

I think the worst thing is thinking things are going well, and then the despair when you start on the well worn path of biopsies, CT Scans, waiting for appointments..............well just the waiting mainly. Sometimes I wonder if the not knowing is almost worse than the knowing!!!
Best wishes
Heather.

Dear Heather,
Gwyn is bang on target - I can say with assurance this is one forum that cares and both you and your husband will get all the help possible from here. I myself have not been through this particular cancer but there will be many who not just have gone through but come out and will give you excellent advise on how and what to do - once the doctors have finished with the job (also in between at times - as most have more experience then the doctors!!!)

Now smile and say hi to Hubby.
Lots of love,
Ananth

Hi Heather, I was diagnosed with the same as your husband (left side) aged 28 in 1997. If I can help get in touch. I'm in Devon. All the best to you both. Hagg.

Hagg
Thanks for kind words...........
I'm wondering if you recall how you dealt with the chronic fatigue?
Brian, (my husband) is incredibly tired most of the time............it may have something to do with not being able to eat as much as before the op and treatment......however, he can barely manage a small walk before he has to rest again.
He is only six months on from his op and he finished his radiotherapy and chemo 2 months ago....so maybe this is all quite normal? I keep trying to feed him high calorie foods hoping this will help.
Any other suggestions?
Heather.

hi heather
i'm so glad that you have found this site,its just as hard for the carers as it is for the patient if not worse,my husband said the worse thing for him was watching me suffer and not being able to do anything for me,at least the patient knows whats going on i am just glad of the support my husband has given me,your husband will be very tired the chemo and rt really do take it out of you.any questions then fire away you can bet that someone has been there,we also have a resident dr but he is on vacation at present but he does look into the site from time to time.i wish you and your husband all the best on this rotten journey.love shirl xxx

Hello Heather

I am back! The fatigue following treatment is common. The focus now should be on resting and rebuilding his strength. Often if the defect in the palate is not repaired surgically (there are pro's and cons to this), a temporary obturator plate is fitted before a permanent one is made. (Hagg wears one.) Ask your husband to practice stretching his mouth open to avoid the muscle (scarred from surgery and radiotherapy) tightening and limiting mouth opening (see posts on trismus).

We are here to help.

Best wishes
Vinod

Hello Vinod
Thank you for your suggestions. Brian has been exercising with the tongue depressors he was given, but I must admit he is a bit hit and miss with this, I'll make sure he makes it a very regular exercise.
He does have an obturator fitted and is in the process of having another made at the moment as his mouth changed so much during the radiotherapy. I'm hoping he will join in with the forum as I'm sure being able to share with many others who have been through what he has will be good medicine!!
Thank you. Heather.

Heather

I have an obturator (because of complications with blood flow to the flap during surgery leading to failure of reconstruction) and have had various fittings because of changes to cavity caused by radiotherapy.

My timeframe was a little earlier than your husband's. Surgery end of August, finished chemo and radio end of November. It took 3 months to regain minimal physical strength.

I will continue to look at this thread to see if there is anything I can help with.

Martyn

Martyn
I had a look at your story "decided to join in", and it's amazing how similar yours and Brian's journey has been.........he went into hospital after his chemo and radiotherapy and he got an infection - C Diff - which really laid him low for a while.
He came through that Ok, although very weakened, and now, just when he seemed to be slowly regaining some normality, it seems that the cancer has returned but this time in his nose.
Life is certainly a bitch, isn't it??
Anyway, my son and I are trying to keep him positive, but he his feeling very low and depressed.
I want to encourage him to join the forum as I think he won't feel so isolated.
Hopefully he can draw strength from the other members.
Take care
Heather.

Heather,

In my case the tumour may have started in my nose. I have had the lower part of my nose taken away and I do not have nostrils. What is left looks like a boxer's badly broken nose.

I hope that Brian decides to come on the forum

Very best wishes

Martyn

Dear Martyn and Heather,
Both of you are terific people and am glad you both can understand each other and help out each other. I am sure Brian will receive all the support from everyone here on the forum as its one forum that is unified and has a never give up attitude.

Heather, I too have been through the ravages of cancer but have never complained about it. I feel to a large extent I deserved what I got and its me to cope up with the same - with the back up of my army - my wife, my mum,my sons and everyone here on the forum. This is not to contradict any statements made by you and neither is it a fact od deserving. Its a matter of choice.

Do try and bring Brian, as Martyn posted, into the forum where I am sure he will also have a battery of soldiers to help him in his figt against cancer.

Martyn, I am really glad you have begun to look up at things in a very positive manner. Kudos to you, my friend. Just let your confidence urge you on to the life of appreciation and love.

With tons of love to both, warm hugs and xxx for Heather.

Sleep and watching rubbish on TV is good, particularly something cheerful and jolly like Diagnosis Murder and Car Boot Challenge! He will need lots of sleep and relaxation it is normal.
All the very best to you both
Tony

Ananth & Anthony
Thank you for kind words and good advice!

Brian has been told he is to have his CT Scan this Wednesday at 4pm and we should have biopsy results the next day - it will be good to have some information to process..

Lots of trashy TV and sleep are certainly what Brian seems to need at the moment. I'm hoping to encourage him to spend some time in the garden, just sitting and enjoying the sunshine.....good for me too.

Hope the sun is shining wherever you all are today.
Love, Heather.x