Hi everyone,

Thank you all for you kind replies and wise words. It is so hard to take all this in, and have to let people know. I have still been off work until today, I am due to go back tomorrow, dont really feel up to it as I want to spend all my time with mum, but I will need time off when she needs me most and obviously after, to be there for dad.

Dad doesnt understand and is being very agitated, he wouldnt let the nurses in last night kept saying I will look after her, thats my job, then he starts to wander off 10.30pm good job we were there.

Pam, the consultant didnt give us much information about the tumours, but the x ray was on the computer screen and we could see them in both lungs, l was very big and he said it was quite rare to re-occur in the lungs it usually recurs back in the mouth. I, like you, think it must have been there originally, although mum had all the tests before the operation, and once they did the operation the air gets to it.

All her x rays originally didnt show up, even when she had the nasal tube fitted, so it has flared up very quickly. Mum hasnt been right since christmas, feeling tired and pains in her shoulders, but consultant said she would have no upper body strength after removing lymph glands so we thought this was normal. I did ask about the radiotherapy and he said she didnt need it.

I just hope we get the strength to help mum through this terrible ordeal. She is starting to come to terms with it but very shocked. We just take one day at a time. The difficulty is there is not prognosis as such because he couldnt tell us what to expect, as a lot depends on mum on her will to live but at the outside 6 months.

Thank you all for your kind comments
Shirley

Hi Shirley,
Just wanted to let you know I'm thinking of you,your mum and family.

Love,

David.

Hi Shirley
I think it's a natural reaction to talk/think about a prognosis, 'how long?' etc and initially that's what I was like with Trevor ~ 'if I only knew how long we've got' and so on. Thankfully that soon passed and I hope it does for you too. All that does is take your mind and actions away from the moment you are in and actually have, with your Mum. When it all boils down time doesn't count, it's how your Mum is coping. She could have months of pain and discomfort or she could be lucid and well for a shorter period. Just make the most of every moment because it could be the last (for any of us really, but we don't think like that and don't worry til we know that time is running out!). When Trevor used to comtemplate the time he had (which he ALWAYS thought was at least another two years!!!) I used to say that I might get hit by a bus if I was busy thinking and worrying about the fact he was going to die on me and then where would we be. Make sure your Mum knows how much you love her and what she means to you. Life is too short for us all.
In relation to scans etc not picking up tumors. Although Trevor had a clear PET scan following his treatment, or neck dissection ~ can't remember, just 12 months later he was so full of cancer he didn't stand a chance. So many things you can spend your time thinking about ~ it really changes nothing.
Keep your chin up, Shirley and be sure you have support for yourself. I really feel for you both.
Love from Down Under
Deborah

So sorry to hear your bad news Shirley Ann, your in our prayers. Keep strong for your self and you mom.

Hi Deborah,

Thank you for your reply, I know what you are saying is right about the timescan, but it is so difficult not knowing how long we have mum with us. I cant bear the thought of never being able to see and talk to her again.

I am spending every possible moment with her that I can, Im wearing myself out at the moment, dont feel too good today bad headache and giddy spells, obviously all the stress.

I want to take time off work to be with her, but dont know the right time when to be off, when she needs me most. Its hard working because I cant concentrate and I work in a shop with customers so it is hard trying to be strong.

Mum has carers going in now 3 times day, she wasnt happy about it but has got used to it now after a week. Dad goes to day care l day a week for now, he didnt like it and goes again tomorrow. His moods are all over the place, very agitated obviously picking up on the situation and when mum has a bad day he is worse, wanting to go out wandering.

Mcmillan nurse is only going there l day a week up to now, is this normal? I thought it would be more for emotional support for mum and for us daughters. We are not getting much support, good job I have my sister husband and brother in law to confide in.

I just wish I knew what to expect as the illness progresses. She is quite well at moment but is having trouble swallowing her tea mash and gravy, she is starting to get worried about that, and so am I.

She is drinking lots but choking more and having panic attacks.

Thank you all for your kind thoughts
Shirley

Hi Shirley
macmillan will increase their visits as things move along but if you do not feel adequately supported then speak to them.When they came to see robin they always had tea with me in the kitchen and gave me the chance to talk as much as i needed.

hi everyone,
Havent posted on here for few weeks, been very busy and stressed looking after mum. In a matter of days my mum has gone from being ok to very poorly. She is in bed all the time now, only getting up to go to the commode, that is taking all her strength because she is so weak.

I cant believe the deterioration in her, so drastic in a matter of 2 weeks. Her morphine patch has been increased to 50mg now plus voltarol, she still seems in a lot of pain. Over the last couple of days she has been very delirious and hallucinating terrible. Sleeping all the time, we never have time to speak to her because she is always asleep.

My father is very very agitated and confused. We have told him she is never going to get better, he says he knows that. Mum asked tonight will i ever get better, which is bit worrying as she knows there is no treatment for her.

In 5 weeks we have seen the mcmillan nurse twice then i phoned up thursday before easter to request a visit and she was quite taken aback at how bad mum has gone, that was week today and still havent seen her. Hospice at home nurses are going in to give mum bed bath once a day but otherwise not much help is being given. District nurses are very good going in to assess her and change dressings on her pressure sore on her bottom and giving us advice.

A bed became available in our community hospital today but mum just doesnt want to go in hospital, I can understand that as she was there a long time last year after her operation, but we thought that would be the only place she could have 24 hr care but she got too upset. We will try our best to keep her home as long as possible if thats what she wants.

She looks terrible, and god knows how long she will be with us but she is suffering and it is heartbreaking and soul destroying to her family to watch her go through this.

She has been calling out for her mother who has been dead for 35 years but we all need our mums when we are ill.

Thank you for reading
Shirley

Hi Shirley, I'm really sorry to hear about your mums deterioration. This is a really cruel disease sometimes. I hope your mums suffering is short and she finds some peace. I wish there was more I could say. Hagg.

Oh dear, Shirley. My heart goes out to you and your poor Mum.
Your words are so close to home, and while I know they say one can never know how another person is feeling, I feel I can say I know EXACTLY how you are feeling.
Unfortunately I think we all believe (hope) that everything is going to go along as per usual and then we will pass quietly in our sleep afterall that's how it happens in the movies doesn't it? Sadly it isn't like that and those last days/weeks are taken up with the world turning on it's head, distance building between us and our loved ones as medication and illness takes them to another place. Our hearts basically choke us as we can't find the time or opportunity to pretend things are as we want them to be because we are too busy catering to their needs all the while fighting the obvious truth and suffering. On one hand we don't want the suffering but on the other, we want everything to be as it used to be.
The first thing I thought when Trevor died was that I had got what I'd hoped for but sadly that meant I didn't have him anymore. It's all so hard and sad Shirley but you will do what you need to do for your Mum and one way or another you'll get through the time ahead, you have no choice so just be sure you do everything you want so you have no regrets later on.
Thinking of you and sending you love and positive vibes.
Deborah

Hi everyone,
I'm sorry to have to tell you all that my mum has passed away early hours 5.30am this morning thursday 15th April, 2010.

She eventually did go into hospital on the district nurses advice last night at 6.30pm and after seeing the doctor we all went home. We left our phone numbers incase mum took turn for the worse and after trying to sleep which I couldnt we had a call at 4.30am and she died an hour later with all the family around her, very peacefully in her sleep.

She is out of her suffering now and is at peace, now we are all suffering now without her. My dad is distraught and we are all worried how he will cope without her. He keeps forgetting and keeps asking "wheres mam" which is so upsetting because we have to keep telling him.

Im staying with him tonight, my sister stayed last night then one night he will be on his own.
Thank you
Shirley

Oh, Shirley

I'm so sad to read that, and I'm sorry for your loss.

You're all in my thoughts at this difficult time.

Julia

Dear Shirley
My deepest sympathy to you and your family. Now a new hurting begins. Be kind to yourselves and allow yourselves to experience the feelings as they come to you.
As you say, your Mum has peace. Everyone else now has to find theirs too.
Sending love from Down Under
Deborah

shirley i realy feel for you and your family at this sad time .

Shirley Ann,

I'm sorry to hear the news! Your family and you are in my prayers during your time of need. My best advise is that she is in a better place and no longer in pain. That is how I dealt with my mom's passing.

Pam

Dear Shirley, such sad news. Everything will be very raw just now, but some time in the future, you will be comforted by the fact you did everything you could to help your Mum & you will have memories of the good times before she was ill to sustain you. Many condolences to you & your Family. Fran.