Hi everyone,

Many thanks for your replies. It does make me feel better hearing your positive replies about either yourselves or your families.

This is the only support and comfort apart from my family and good friends that we have at the moment, until mums treatment commences. I am so lucky to come across this web site. I tell my sister the replies and it comforts her as well.

Last couple of days have been very difficult, mum has still been in lot pain even though shes on painkillers, and yesterday had problem with dad, he broke down and couldnt stop crying, think its hit him now. Hes alright today doesnt remember bless him, maybe good he doesnt.

Shes been for mri scan today, the medicine knocking her out and sleeping all time, had to go up to make sure she was up ready for her appointment. Didnt help yesterday when trying to ring her the phone was out of order.

I dont live that close to mum to be able to just pop in to see her thats why the phone is vital plus I dont drive. my sister lives closer to her.

Winnie - What a coincidence your mum being the same age,and what a comfort knowing she had the operation and come through it all right, only thing being my mum will have to have jaw removed and built up with bone from her leg. Her legs look like little sparrow legs at the moment. My dad, like yours, has been her carer for a good number of years, and still is despite his illness, think its mum that keeps him going. I worry when shes in hospital, he might deteriorate because he hasnt got her to look after, and her to look after him.

We dont know if mum will need treatment after the operation, hoping not, find out in 2 weeks on 5th June, 2009. Its funny reading your post, about dentures, because thats what my mum has been talking about, dont think she realises it will be a long time before she needs them, bless her. She doesnt know the details of the operation yet and maybe good she doesnt, but she is asking questions.

Hope you have a lovely holiday, and isnt that encouraging to know your mum is alright to go on holiday with you. Myself and husband have already got a holiday booked end August to Zante, but its on hold for now until I know whats happening with mum. She doesnt want me to cancel my holiday, god love her, but will play it by ear for now.

Paul - I read your story and glad to know you are recovering. Yes, the problem at the moment in her eyes, is dad, she is desperately worried about him and he doesnt understand why. He doesnt realise he has an illness which is part of the alzheimers. Thank you for your prayers, I so appreciate it. Im not very religious, but seem to have lost my faith in god at the moment, but still ask people to pray for her, so it must still be deep rooted somewhere.

Shirl - good name after my own heart, I get called Shirl,dont think my mum would be able to cope without my sister and I at the moment, and my dad keeps saying "theyre good girls even though we're both 50 and 47" he treats us as if we're his babies. The nurse said last week that they will become mums friends and that is good to know. Glad you are getting better, did you have the same operation?

You are all so kind, you keep us going.
Many thanks Shirley

Good Morning Shirley,
You seem to be facing up to things a little better now, no one will pretend it is easy but stick at it.
Your point about mum not knowing the extent of the treatment raises the question of how much she should be told, and more to the point how much she can cope with.When it is a loved one we are probably not in the best position to judge because our main concern is to avoid any extra anxiety. It is best left to the professionals to judge how much she needs to know, they are used to this situation and handle it better than anyone else.
Best wishes to you and your family, when there doesn't seem to be much light at the end of the tunnel remember this old guy in West Yorkshire who had this job done five years ago and has lived a normal lifestyle since.
Keep Smiling
John

Hi everyone,

What a stressful weekend we've had with mum. Phoned yesterday, dad couldnt wake her up, start panicking, then after a few times he got her up. Its such a worry, the medication is too strong for her she only weighs 6stone 4pounds. The doctor put her on MCT tablets as well as oromorph which is knocking her out.

My dad is coping really well but worried about her. I went out for the day to put flowers on my mother and father-in-laws vase in the crematorium, as its coming up to the anniversary of her death in June. I broke down there which I've never done before, I know if she was here, she'd have been a tower of strength to me, she was a good friend as well as my mother in law. She died of cancer as well which doesnt help, and also my husband re living her death.

Carried on out for the day, mainly to buy new nighties for my mum, ready for her impending stay at the hospital. Had a nice pub meal with my husband and son, that was nice.

Got up this morning (sunday) to my mums neighbour knocking on my door, they couldnt wake my mum up again, and the ambulance was called early hours of the morning 4am as my mum had fallen out of bed. She refused to go to hospital. Who called the ambulance I dont know, certainly wasn't her, must have been my lovely dad, shows what he can do in an emergency bless him.

Phoned emergency out of hours doctor, who said to reduce mums medication. Stayed there a few hours until she was herself again, going to phone her soon see shes ok.

Thanks for listening.
Shirley

Shirley

What a dreadful time you are all having. You must be constantly worried about both your parents. And coming up to the anniversary of you moth-in-laws death as well. There is not a lot I can say to help apart from that we are all here for you and will listen whenever you need us to.

Amongst all this do try to take some time out for yourself and do some nice things. When I was waiting for my operation 18 months ago I made a point of doing something enjoyable every day and wrote about it in my diary. I think it was the only way I kept going.

Thinking of you all and hoping you have some better days.

Love

Gwyn

Hi everyone,

Sorry havent given you all update, tried the other day but computer went funny, didnt post it on for me. Anyway, here goes.

Mum is still being very positive, she is so strong, cant believe it. She went to Glan Clwyd on tuesday for pre-operative tests ready for the biopsy. Her heart is strong had ecg, blood tests, and talk with anaethatist.

She is still in pain, not taking mct tablets they were too much for her, she fell out of bed taking them, hurt her arm, but nothing broken. She saw her gp this week, wont let me go with her, wants him all to herself she said laughing, if you saw him you would know why, he is so dishy and is lovely with mum. Think he gives her strength, he told her she will be alright, she always seems better when he says that.

We're on pins tonight, worrying about tomorrow as mum has her biopsy tomorrow, monday, under general, when they will also have a good look in her mouth, to see how big the tumour is.

Then, the worrying time, on friday when we find out all the results, and details of what they will be doing. She is trying to eat as much as she can, doesnt look as if shes put weight on though.

Social worker came on friday to sort out dads care, she was very nice, wait now for the outcome of that this week.

Thanks for listening
Shirley

Hi Shirley,

Hope everything went OK for your mum today.

Take Care

Sue

Hi Shirley, Just been thinking about you and your mum today.I hope everything went ok,please let us know.

Love Sammy x

Hi everyone,

Well mum had her biopsy and exploration of mouth done late last evening had to be in by 8am didnt have op done until 5pm las night.

Just been to see her, they wouldnt let her home last night want to do more tests, x-ray her arm where she fell, blood tests etc. She is very sore, was a bit low on phone this morning when I phoned but when we went to see her, she cheered up a bit.

She had a bit of fright when coming round from the anaethaesetic, she could'nt breathe and panicked a bit, then they put her on menthol to help.

She has got to stay in longer, they are going to fit a peg tube in her stomach to help build her up ready for the operation and obviously afterwards. She had to take a barium meal when we were there ready for tomorrow. I did think they would do this as I have read all your comments on here.

Dad is our worry too, yesterday he stayed in my sisters as I was in work, my nephew stayed overnight with him. and he has been with me all day, but all he wants to do is go home and do his routine.

This sounds promising for mum, hopefully will mean that the operation sounds hopeful.

Let you all know how she gets on tomorrow, thanks for your kind comments.

Shirley

Hi Shirley.
Sorry to hear about your mum it is such a worrying time for everyone my thoughts and prayers are with you. I hope everything goes well for her. I dont know how difficult the surgery will be.
I was diagnosed with acc in March I had the biopsey done on my birthday and the results were not great. I had the roof of my mouth removed I now have a plate in place. I was in hospital for 10 days, my face was very swollen, by degress the feeling is coming back. I had very good pain management because i was never in pain. Hopefully it will be the same for your Mother.

I know where she is at the moment, wanting to go in to the consultant on her own.I am putting my family's nose out of joint by doing the same thing. I think it is easier to go on your own. You feel you are still in controle of your life at least for another while.


regards Noreen

Hi Noreen,

Thank you for your reply. Have just been to see mum this afternoon, she is still in hospital because of the peg tube. She doesnt like it, but hasnt had anything to eat for the last 24hrs only a drink of sterile water 4 hours ago, was a little bit sick before we left, think a lot of it is wind. She was going to try a bit to eat as we were leaving.

We go to the hospital tomorrow to see the consultant, but mum feels differently Noreen, she said she doesnt feel she wants to be there she wants us all to do it for her, I explained the consultant wants to see her not us, to explain what is going on, we will be there for support and caring. She said later, that she is scared of crying and breaking down in front of the consultant.

We are all very scared of what is ahead for her, but she is still being strong. My dad has been very lost without her, they are a couple who are never apart from one another. I had a talk to her today saying that they have both done very well to reach the age of 77 and be so independent and not ask for help from anyone, mum seemed happy about that.

The nutrionalist nurse came to see us today to try and explain about feeding her through the peg tube, she will come back and meet all the family tomorrow after the meeting to talk us through the procedure of the syringe and cleaning, as this is our responsibility to help mum with this.

She will be coming home with us tomorrow after the meeting and dietician. My dad will be happy then to have her home, dont know how he will be when she is in having operation.

Thanks for your concern.
Shirley

quote:

  

Dear Shirl, here I sit in the night after finding my beloved dad has this awful disease, {which I never even imagined until this week} and getting more and more shocked by the info I am reading. It seems so awful and scary. When I saw you note, it seemed like so much less lonely, as my situation is so similar - just reversed. My dad has the tongue cancer and my mum is fading away in her head.... It all seems so terribly scary.

dear shirley
i am wishing the best possible outcome for your mum with whatever treatments they decide is best for her,i found my dietician such a great help and she still is and has become a lovely friend to me.take care,love shirl xxx

Hi everyone,

Sorry haven't been on for couple days, been very hectic. Went to see the consultant on friday, what a day, very long and stressful, passed around to everyone. Mr Jones was running late, mum was supposed to meet us in cancer unit, as she was still in hospital, bu Mr Jones came up to the ward instead.

He explained he had run number of tests, and that was why mum had stayed in all week, in preparation for the operation. had peg tube inserted to build up ready for op and after.

He hadn't got results of biopsy yet, but after a long meeting to discuss mums case, said the only option is surgery on mums tongue, remove half her tongue and reconstruction, and remove lymph nodes in both sides of her neck as a precaution. He will do neck dissection, hopes her jaw is alright, wont know until day of surgery if it is in the jaw, thats why she had an in depth scan on her leg to see if her bone is strong enough because of her arthritis. They dont want to start operation and find half way through if they need to reconstruct jaw the bone no good.

He doesnt know at this point, whether she will need radiotherapy until the pathologists report. We met the oncologist, who showed mum the mri scan of her mouth. We found it very interesting, the tumour is very big. Without the operation, the tumour would just grow bigger resulting in no speech, no eating and lot of pain, possibly radium but not guarantee it would kill the cancer without removal of tumour.

Mum had to decide herself, even though she asked our opinion, she had to make decision herself. Date of operation, would you believe, is on my birthday and pearl wedding, I had a feeling this would happen. Main priority is to get mum better.

She came home with us after all day in hospital, but low and behold, she had to go back in late last night, when the syringe part of her peg tube fell off. We tried feeding her, and it was leaking, nurse said it was probably blocked, but worse than that. She is still in hopefully find out tomorrow if it has to be re-inserted. Poor mum, she is in so much discomfort and fed up.

Alison - so sorry to hear about your dad, you must be feeling all sorts of emotions at the moment, know we were and still am. Such a coincidence your circumstances. Wont pretend, its not easy looking after dad between us all, cause he likes his own routine, but hes our dad, and we all love him so we do all the caring for him.

Take care, Shirley

Hi Shirley ann,
Thinking of you all at this time and praying everything goes well. Best of luck to your mother. I will be thinking of you all
Noreen

Hi Shirley Ann
You and your family sure are facing tough times and I just wanted you to know that you are all in my thoughts.
Please give my love to your Mum.
Cheers
Deborah