Hi my name is Shirley and I am new to this forum. It is my mum that is suffering with this dreadful illness, for the last 7 weeks she has been in constant pain and agony with her mouth. She cant eat has lost loads of weight she weighs 6stone 4pounds she is 77 yrs old.

Her doctor referred her to our local hospital to the maxillo facial outpatients clinic on wednesday this week where we were told the shocking news that it is a form of mouth cancer, I knew the amount of pain she was in that it was serious but this came as a shock to us all. My mum has been very calm and collected I think she was expecting it to be serious.

We have had another appointment today (fri) of same week to the cancer specialist to find out what type of mouth cancer it is and whether it is treatable or not. We've been told it is in the jawbone and that is why my mum has had a lot of pain going up to the ear. We thought it would be treatment but the bombshell is it is major surgery to remove the jawbone, dont know the extent of the operation yet, as she is having an mri scan nxt week and biopsy under general anaesthetic as she was too sore for a local today.

As you can imagine we are all devastated with this news, and especially as my dad is also ill being newly diagnosed this year with alzheimers disease and relys on my mum a lot. Don't know how much more bad news we can take this year.

We go back 5th June to find out results of these tests and find out further details about the operation. My mum is all prepared to have the operation providing she is fit enough and strong enough because she has a lot of medical problems including osteophorossis arthritis artificial hip and kidney problems.

Has anyone had this operation?

Sorry to hear that Shirley. I had my upper left jaw and palate removed in '97.
Obviously you are all in a state of shock at the moment but I found it was best to take one step at a time. Also, take any help that is offered by your mums team. If you think you need more help or advice then never be afraid to push for it. Keep us updated, Hagg.

Good Morning Shirley,
Five years ago I was given the same news that your mum has just been given,I suddenly realised what it must be like to be struck by lightening and I could see the end of the world (my world) just a few feet away.
The operation sounds similar to my experience and I will not pretend it is all jolly good fun because it isn't, but it is no where near as bad as it sounds. I expected to wake up from the operation to find I was in terrible pain but it wasn't like that. The pain management is excellent, when I expressed surprise at the lack of pain the surgeon said "that is normal,are you dissapointed"? I assured him that I wasn't. The removal of a section of the jaw bone is only part of the procedure, a new jawbone is fashioned from bone and tissue taken from the arm or thigh so the facial disfigurement is not as bad as you may think, in some cases it is not particularly obvious at all.All of this work is usually done as a single operation.
Something you have to start thinking about now is care for your dad,your mum will not be able to cope for many months to come and probably she will never again be able to cope to the same extent as she has done to date. You need help and help is available, the first person to speak to is the McMillan nurse assigned to the case, if you have not already met her you should be introduced at the appointment where the treatment is detailed.If she is not there ask to see her.Aftercare is the province of the McMillan nurse she is a kind of girl friday who gets things done.
Please Shirley put aside any thoughts about not needing ,or wanting, charity. It is not charity, you will need help and help is there for the asking...ask for it!
Now that is enough for one day, if you have any particular questions please feel free to ask, I would be only too pleased to help, If I don't know the answer other members will.
I was diagnosed in 2004 when I was 68 ,I am now 73 and enjoying a near normal life for a 73 year old.
Please give my best wishes to your mum, the same good wishes go to you and your family.
Keep Smiling
John

Hello again Shirley,
A couple of things I forgot to mention, firstly this operation is not a new experimental procedure it is well established and carried out regularly throughout the developed world.
Secondly a thorough assessment of your mum's state of health will be carried out before the operation so the sugical team and particularly the anaesthetist are fully aware of all the problems and prepared for any contingency.This type of cancer is most common in older people who normally have other medical problems so the "team" are used to the complications and know how to deal with them.
Try to relax a little over the weekend Shirley, you have quite a busy time ahead of you.
Keep Smiling
John

Hi shirl
I am so sorry to read of your sad news.i can't really say much more than John has said,except to question why on earth you are having to wait so long for the test results?With this disease time is of the essence and that seems like a long time to get things moving.

good luck

Hi everyone,

Thank you for your prompt replies, nice to have support from strangers. We feel at the moment as a family we have heard this dreadful news, sent home to digest it and feel so alone with no support from anywhere.

My sister and I are experiencing all sorts of emotions at the moment we are in a daze, go to bed crying wake up crying. Feel so angry, and upset and want to scream at the world, I take it this is normal reaction. Only time I feel strong is when I am with my mum as she is being so strong and calm like as if she has a sense of relief (if thats possible) of knowing what is wrong with her. She doesnt realise the implications of the operation and how serious it is because the consultant isn't telling her the details of what they do and recovery details until he has the full picture with results of scans blood tests, x~rays, and biopsy and work out the nxt step.

She is now on oromorph medicine, and thankfully, is relieving the pain enough for her to eat and drink. She is just so thin, until she is built up I dont think she is strong enough to withstand anaesthetic alone never mind the operation.

I realise from reading comments on here, that it is not an easy journey and am worried sick about her.

John, yes it is going to be a busy and stressful time and sorting out dads care is a top priority, we dont even know how long mum will be in hospital for.

Liz, yes I think it is a long time too, but it could be 6 weeks before the operation. Consultant seems to think this tumour has been in the jaw growing for a long time even as long as 18 months ago and now symptoms have come to the surface.

Dont know what to expect, so worried mum is 77 but know she is determined and especially for my dad and her family. I am so proud of her strength wish I felt as strong.

Thanks for your quick replies.
Shirley

Hi Shirley,

So sorry to hear about your mums diagnosis.

Just wanted to say that your emotions are definitely normal. I was the patient in the family and was diagnosed with tongue cancer last year. I remember, prior to my op going to bed and crying myself to sleep. I woke sometimes to the cries of my husband. He tried so hard to hide his emotions but I could feel his pain and that of my son and daughter.

It's good to hear that your mum has found some pain relief that is working enough for her to eat and drink which will help build up her strength a little.

I joined this forum in March of this year which was a year after my operation but wish I had found it earlier. Since being registered I have felt so much better as have been able to query any problems I have had and there is always someone who will come back to you,so make sure you make use of the forum if just to come on and vent your feelings.

I wish you and your family good luck. Keep us informed on how things are going.

Sue

Hi Sue,

Thanks for your reply.

Just been to see my mum tonight, and she is having a really bad day today, shes very tired I think due to the medicine and think reality has set in, and the news has sunk in because she is very tearful.

She has started asking me questions about the operation which I cant answer, so obviously panicking and frightened which we all are for her.

Shes worrying about my dad, how he will cope without her when shes in hospital. He is a love says he understands what is happening to her. Dont know if he fully understands but he knows she is very poorly and needs an operation. If he would have been well, he would have been devastated like we all are.

She goes to her gp on tuesday to monitor how she is doing on the oromorph, then scans all week after.

Cant believe this is happening to my lovely parents who must be one of the most loving couples I know, go everywhere together been married 53 years in July, never done anything wrong to anyone in their entire lives.

Thank you all for listening.

Shirley

Hello Shirley (have never met a Shirley who isn't caring and sharing)
I have read through your posts and feels very sorry for your sadness and the tough time your family is facing, particularly your Mum.
Is it not possible for you to speak to someone sooner so that your Mum has the answers she needs to her questions? I can cope with anything (no matter how awful) provided I've been given all the details. If you know what you are faced with you are able to make to decisions based on sound knowledge. Decisions made, your mind is able to relax somewhat.
Naturally you will all be upset ~ perfectly natural response and again, all will be afraid, especially Mum. She is the one who has to endure what is ahead, first hand and she needs to know as much as possible about it. Even if the dr wants to wait for scan results etc surely it's possible to speak to someone in the know to have your questions answered?
Has anything been said about your Mum having a PEG fitted? If she is so poorly then surely it makes sense to get as much nutrition into her as possible, as early as possible.
I wish you well, Shirl and hope that you are all able to find some peace of mind in this sad situation, soon.
Cheers from Down Under
Deborah

Dear Shirley,Welcome, by now you will have realised you have joined a worldwide extended family, all ready to answer any questions you have & lots of shoulders to cry on.
As a family, you will have a lot to deal with over the next few weeks& though it seems a long time from diagnosis to start of treatment, be reassured there will be a large Multi disciplinary team working behind the scenes to give your Mum the best care possible, ready to go once all the Scans etc are reported on, arranging Theatre time & a hospital bed etc.
I well remember the feeling of sheer lonliness when my Husband was diagnosed with Tonsil Cancer. There was only one H & N Cancer specialist nurse for this large area & I never did see a Macmillan nurse. It was only later that I discovered the Oncologist had a Nurse who attended all the clinics, she was very knowledgeable & helpful.
Your GP also has a team, District nurse, Health visitor & Practice Nurse who you can also call on for help.
The Consultants dont always tell you everything at once, they know the Diagnosis is devastating, but if you ask questions, will answer honestly. Problem is, we initially dont know what questions to ask!
Will you be going to clinic with Mum? I took a notebook with me with the questions I wanted to ask & wrote down the answers, asking them to repeat what I didnt understand. They were very patient & prefer to answer your questions, rather than you go away wondering.
As John says, you may not be able to cope with Dad and Mum together. Dad may need emergency respite care. Your local Social Work dept would set this up for you.You may like to let them know your situation in case you need their help.
Lastly, you may want to think about applying for Attendance allowance. This is a non means tested allowance for people over 65yrs. I,ll send you a PM about this if you wish.
Remember, we are all here for you, & you can ask any questions, & come back to us at any time day or night. Theres usually someone online. Best wishes, Fran.

Hi everyone,

Thank you all for your concern and replies. It certainly gives us hope hearing what you have all been through.

Ive been to my doctor today and so has mum, we have the same gp which is useful. He is a lovely man and my mum has always had complete faith in him. He assures me that he thinks in his opinion that my mum is very strong both in mind and body. Her heart, chest and organs are strong her kidneys are just not as strong only due to her age.

He said it will be a long journey long stay in hospital and recovery where she will need a lot of help from her family and social services for both her and dad.

he is really pleased with her pain relief, working well and given her more today, says it is alright that she is sleeping will do her good. Wants to see her next week.

She heard from cancer unit today with more appointments next tuesday for tests and tuesday after for all day stay which I assume will be her biopsy. That takes us to the same week as her consultant appointment on the friday. We will find out about the operation then.

Thank you all for listening, you dont realise how good it feels just to let out my emotions and worry about mum.

Thanks Shirley

Hi Shirley
Great to hear from you, and such a positive tone to your post as well.
It's great that you and your Mum share a beaut GP ~ what would we do without them? They are so much more available when you are in need, than specialists.
Everything sounds as though it's ticking along well and if your Mum is coping with the fact that she is sleeping a lot then that is a big help. She will do a great deal of that throughout her treatment. It's kind however it drove my husband crazy that he was out to it so much (he didn't like to think he was missing anything, I think!).
Hang in there and use the forum whenever you need to. We've all 'been there,done that' so there is always someone who has experienced whatever it might be that brings you here at any time.
Cheers
Deborah
PS I DO realise just how good this forum is, honestly!

Hi there Shirley.

You coul dbe reading from my diary !!

My mum was diagnosed with cancer of the tongue 2 years ago. She was treating with Bonjela, what she thought was a mouth ulcer - which turned out to be cancer of the tongue. She was 77 yrs old at the time and her and dadhad been married 53 years. The difference is, my dad has been her carer, nurse and general support throughout.

She endured 11hrs operation followed by radiation, which was not nice. None of it is nice and there are some tough times ahead, however, there is live after mouth cancer.

She is still with us and we are going to Kos for holidays next Wednesday. She is bitterly disappointed that she doesn't yet have a functioning set of dentures and is worried about what whe will eat whilst we are away, but we will get over that too.

Try to get your mum to build herself up a bit before any operation. If she is having difficulty eating now, ask your GP for some Ensure Plus drinks, which are fully fortified and balanced food.

Your reaction is totally normal, believe me.

Only once throughout all this did I actually break down and bawl my head off. It was a noise I didn't even recognise - but it was coming out of me. Once that was over, I regained my composure (only my husband witnessed it)but it had to come out.

We are here if you need us.

Hi Shirl, You posting is so sad to read I really hope your mum recovers well.
The op is nott he worst thing I dont think its the aftermath of Radio/Chemp that does the lasting damage.
Your Mum must be doubly deverstated as not being able to look after Dad also.
I had to lok after two friends after my op and they passed in 06 so can imainre how mum feels not to be able to help Dad.
Please keep postimg and let us know whats happening and anything we can do or explain to help.

will say a prayer tomororow at mass for you all.(if you need it or not hehe )

cheers

Paul

dear shirley
i am sorry to hear that your mum has this rotten disease,you are such a caring daughter and your mum must feel blessed to have you,i remember when i was diagnosed 2 years ago what a lot of comfort i got from my husband and children and they were there for me 24/7 but i felt guilty for putting all the worry on them but they had to know and there was no way i could keep it from my children.but they were such a comfort and your dear mum must feel like that about you too.yes she must be worrying about her husband as well.i found myself that once treatment started i just went with the flow.the macmillain nurses were wonderful and so were and still are my oncology team and not forgetting my lovely dietician clare who even now can never do enough for me,and your mum will build a rappor with them all.i wish for the best outcome for your mum i really do,with love shirl xxx