Hi everyone,
Well its been a while since I posted on here. Up to now mum has been progressing quite well, with her nasal tube having jevity overnight through the pump, the district nurses coming to see to her at night. Mum hates losing her independence at bedtime, because she has to wait for the nurses to come which can be anytime from 9pm onwards. But needs must, it has been successful up until now.

We went back to see the consultant fortnight ago l9th february, 2010 when after a lengthy discussion, he agreed to remove the nasal tube to see how she would be without the food being pumped into her body overnight, and she was bit fed up of the tube and getting very low.

Well, she has got progressively worse over the last week, has become very depressed, we all thought she would buck up but she is terrible, sitting down all time, lying in bed, not even getting dressed, which is totally unlike my mum, she has lost all her positivity and yesterday she wasnt even talking to any of us.

Today, I have spent most of the day phoning around to try and get help for us, as we as a family are at the end of our tether. I got in touch with her consultants office they had a word with him, and the outcome is she has to go back to hospital tomorrow to have the nasal tube re-fitted, as she is not eating. She hasn't got any fat on her, still only weighs under 7 stone, is tiny so can't afford to lose any more weight.

She has been quite cross with me today, and said I am interfering, but at the end of the day, I want her to live after all she has been through. It seems like a step backward at the moment, and she is not happy, but is accepting it. She is more concerned about the depression, she seems as if she is giving up on life, does anyone know if this is normal? Ive been told this can be an effect of the operation, like delayed reaction and post operative stress to her body, has anyone else experienced symptoms like this?

This mood has been more difficult than any to cope with, and it is bringing all the family down. My poor dad is so confused, he doesnt know what is happening to her. They are together too much and his illness is getting on top of her, so I am trying to arrange day care for dad for him to stimulate his brain, and for a break for mum.

Thank you for listening.
Hope everyone is doing well
Shirley

Unfortunatly Shirley this is an all to common problem post treatment.Oral cancer in its many forms is probably the hardest form of cancer for anyone to live with.Its effects are highly visible to everyone it takes away the most natural basic skills ie:eating drinking,speaking and by the nature of these side effects weight loss is dramatic and energy levels depleted to the point of sleeping up to 18 hours a day.The feeding aids are intrusive and uncomfortable and just serve as a constant reminder of what is gone and unfortunately in some cases something that may not return.

In the mind of the patient,particularly the older ones the issue of quality of life may become almost an obsession with a great deal of soul searching regarding the future and what it will bring.Try to put yourself in your mums shoes for a short while and think how you would feel.

Having the feeding tube particularly a nasal tube almost takes away her right to choose what she wants Shirley and having it taken out could mean to her that she can once again control what is happening to her,something she will feel she lost the day she was diagnosed with cancer.On top of this she will be carrying your anxieties over her understandable depression and frustration.

My husband went through the whole thing for one reason only,not because he wanted to live,but because he knew i didn't want him to die,and as things got harder and the treatment took its toll he eventually resented me for what he saw as "forcing" him to do it all.He was so awful to me in the post treatment stage of his illness that i left him for two weeks,and i know from experience that this problem was not unique to him,i have many many friends who were in the same awful prediciment as i was ,not knowing how to act or what to say to their loved ones,at a time when you think they should be picking up,and they seem to be going downhill.

Their is only one thing you can do Shirley,and that is talk to her!!Ask her how she feels and what she wants because at the end of the day that is what really matters,and the most important thing for her will be that you respect what she says and that you don't try to push her in to doing what you want.

I hope that doesn't sound harsh shirley,but my husbands favourite saying to me was "its my cancer not yours".Hurtful but true i am afraid,as i could have no possible idea of how he was feeling and that made me realise that all the fighting and willing him to live in the world couldn't make it happen if he didn't want to.Once we talked about it and i heard his point of view,i had to accept that he had every right to be bitter and defeated.

For most people this stage will pass with support and medication
but for some the loss of their most basic pleasures in life and their despair of what the disease has done to them and left them with,is actually worse than death.You need to talk Shirley.

quote:

Originally posted by Shirley Ann:
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?

Hiya Shirley
If you are referring to having a bone and tissue graft,,iv recently had it done,,was discharged from hosp a week and a half ago,if you got any questions let me know thru a private message.

Hi Shirley, I read your mail with admiration for the way you are trying so much to help both Mum & Dad.

I had mouth & Neck Cancer in remission 9 years now and what Liz said in her reply is very much the way it is.
I went through all sorts of emotions in my earlier years and also have to remember your mum had a very radical operation and it take a long time for the body and mind to adjust.


Paul

Shirley,

I understand how your mom feels. Since my recurrance I go up and down. Some days I am just chipper as can be. But other days when there is something I would really love to eat that I used to eat and damn right now I can't now because it's too spicy I get down. I tell my husband all the time food was a big thing in my life before I was overweight loved food. I still love food and love to cook but some of the things I used to make and eat are not tolerable anymore. I am slowly getting back into eating things I did before but couldn't for awhile like potato chips I can do a few but not a bunch.

I think this is keeping me at my weight which is good because I weighed 208 at diagnoses. Now weigh 158 I have gained a little back but am happy.

I yell at my husband all the time and ask him why should I fight it isn't gonna get me anywhere. Then I found out the results of my last scan and found out how much my fighting was doing.

It just depends on what is going on and how I am feeling but I do have bad days I try to talk to him and he tells me I need to be around for the boys and that this cancer is going to take me. He gets mad at me but I tell him to think about what I been through and ask if he could do it. He always says no. My mom was ill all my life and I watched her fight to the end. I appreciate the 23 years I had with her. But I knew when she got tired. My brother tells my husband that I am so much like my mom fighting to get better and to be happy and he says it makes him proud to have me as a little sister. He doesn't know that I read the message he sent my husband. But some days we get tired of fighting but then get reminded of what we still can enjoy, remind your mom of that it may help her like it does me. But she is older than I am but it may help.

I have two young boys so that is my push. I have to atleast see them get married. My mom got to see all three of her kids get married. She got grand daughters before she was gone but not grandsons. I barely got my wedding attended but she made it. Once she new I was going to be okay with out her she decided she had enough and was tired. I understood my brother and sister not so much but I saw what she went thru daily.

Best of Luck to you and your mom and family,

Pam

Shirley Ann,
I am truly sorry you are going through the emotional turmoil that accompanies this horrible disease. Liz and Pam's posts are wonderfully honest and describe the difficult emotional roller that people with cancer and their loved ones experience. I am beginning to really resent the term "carer." For me it evokes an image of someone providing technical help and does not go nearly far enough in describing the emotional experiences that partners, lovers, brothers, sisters, children go through when someone they love, and feel is part of what makes them whole, has cancer.

It puts terrible strains on relationships, but I think Pam and Cookey have put their fingers on the fact that loved ones have to support the decisions that those with the cancer wish to take - although, in my experience finding out what my partner wants is not that easy. Liz is right - its important to talk, but I find getting beyond bluffing and efforts not to worry each other is truly hard. For me, what I most resent about cancer is that it is a disease of deceit. I am a horribly honest person and what I loved about my relationship with my partner before cancer was that he was the only person with with whom I felt I could be really me. Now I find I have to exercise caution and hide my fears. He lies to me because he doesn't want to worry me, so cancer has not only had a devastating effect on him physically, and us both mentally and emotionally, it has really changed our relationship.

Sorry to have rambled on Shirley Ann, but Pam's post really touched me as have many of Liz's over the years.

Good luck,
Cathy

Hi everyone,
Thank you all for your prompt replies, they are all very interesting and encouraging to know that mum is not alone in feeling like this. It is worrying her as well as us as she hasnt had these feelings like this all along.

Its like as if she had given up, but I tried talking seriously to her as Liz suggested, and she was horrified when we suggested if she had given up as my sister thought she replied "dont be so stupid" which was nice to hear.

We do know what she has been through Liz we have all been there for her all along, but I think my mums main problem is she didnt have time to even realise what was happening to her as everything happened so quickly, and she was in a tremendous amount of pain, she really hasnt taken in the word "CANCER" and I think it is all sinking in now.

The other main problem is my dad, as you can appreciate Alzheimers disease is an horrendous illness, and he is very demanding, as it is like having a child around your feet all day, he can't do tasks like he used to, he has lost all his skills, and is very hard work. Mum had'nt even had time to come to terms with his diagnosis then she became ill, so has in fact, been in denial about dad.

I'm trying to get help for dad, which hopefully will eleviate some problems for mum to help her get some of her life back. I had good talk to her, asked her if she regretted having operation, and made absolutely sure she did the operation for the right reasons, that is, for herself, she said yes she was'nt ready to die, but also for dad as well.

I do understand the feeding aids are very uncomfortable and I would absolutely hate it, as I like you Pam love my food and is a big part of my social life as well, as we love going out for meals, so I do completely understand what you are saying Liz. But, unfortunately, if I hadnt got advice on tuesday from the consultant I dont know what would have happened, as mum had lost 6lbs in 10 days and as she is only 6st4lb she has not got the weight to lose.

Hopefully, her overnight feed will build her up as she is not eating. Think she also lost contact with people when the tube came out, as the nurses had no need to come to the house at night to put her on the feeding machine, and although it gave her her independence back a little, she lost her security in a way, and someone to talk to, as my dad has not got much conversation now.

Had a phone call today, to go to see her consultant tomorrow as an emergency appointment, he wants to assess the situation, so hopefully will be able to give us some advice with regard to the depression.

I always worry about the cancer coming back, and although she has a check up and it is only fortnight since her check up, she is sleeping so much its like she was before the operation. How long after the operation is it before you have a body scan as mum hasn't had one, and she had her operation end June, 09? I worry in case the cancer has spread, as she didnt have radiotherapy and although she had her lymph glands removed, the cancer had started going to one of the glands.

Mums diet is very limited, and obviously, is why she wont survive without the tube for now, as she only eats mash, pureed food soup custard not fattening food so she needs the jevity as well.

I hope she gets on alright tomorrow, I am going to see my doctor tomorrow as well as I am not coping very well, as mums problems are affecting me as well.

Thank you all for your time and advice
Shirley

Shirley,

I had my scan 6-8 weeks after radiation. And again 6 months later. Which unfortunetly showed the tumors in my chest.

I would think they would rescan your mom again did she have any positive lympnodes with the dissection?

Pam

Hi everyone,

Pam my mum did have 1 positive lymphnode which was removed but didnt need radiotherapy.

Well, we went on friday for the appointment with mums consultant, we had an awful job trying to get her ready to go, as she is so weak. We eventually got there 10 minutes late but clinic was running late anyway as they have a team meeting first to discuss patients and mum was first on list.

When mum had had her tube inserted on tuesday she had an x ray to see if it was in the stomach as they couldnt get the aspirate, I had forgot about this, but Mr Jones has studied the xray and called us in.

The news is very bad, and we are all devasted, the cancer is back, and has spread to both lungs, sounds similar to Pams case but in mums case there is nothing more they can do, as mum is not fit enough for chemo and he said it wouldnt work anyway with this sort of cancer.

We are all numb, and cant take it in, really frightened about what will happen to mum now, After all she has been through, the last 8 months has been really difficult for mum and us, although she has been so brave and positive all along. She is in shock, and cant come to terms with it, doesnt understand why it has returned so soon.

She is in a lot of pain and sleeping all the time, no energy, no appetite and is being sick. Dont know how long she will survive this but seems to be deterioating fast. They cant tell us how long she will be with us maximum 6 months he said, but I dont think she will be here in 6 months not at this rate.

A big factor for us is my dad, and he is mums main worry. He wont talk to us about it even though, he understood what the consultant said on friday, its like he has blocked it out, he will be losing the love of his life and its so so sad for him, 53 yrs married.

This is an horrific disease, and even mums massive operation didnt save her from it, lifes so cruel, I feel so bitter. I cant imagine life without her, not having my mum to confide in. Good job I have a very close relationship with my sister.

Thank you for listening
Shirley

Hi Shirley

I am so sorry to read about this turn of events for your family.

You're in my prayers.

Julia

so sorry to read about your mum shirley, you and all your family are in my thoughts and prayers, jimmy.

Shirley,

I am so sorry to hear the news your family has been give. Did they say how many tumors are in your moms lungs? I have 3 very small ones. Each is less than 2 cm. I would assume they were there orinally and were too small to detect. That is what I am thinking with mine as well. I am shocked they didn't originally do any radiotherapy with the one lymphnode but then again it would have been so difficult for her.

Your family is in my thoughts and prayers try to talk to your mom as much as possible during what time you have left with her. That is what I tried to do with mine but they told me not long and it only ended up being a week. I let my mom know I would be okay with out her. That was about 8 and half years ago now.

Best of Luck

Pam

Hi Shirley, so sorry to read the news about your mum. I hope the time you have left with her gives you the oppertunity to say everything you need to say and that she doesn't have too much pain. Hagg.

Oh dear, Shirley. I feel so sad for you. I know only too well how you are feeling, just how much does a person have to endure? It doesn't seem fair, and it isn't. The upshot of it all is that unlike the movies, you don't always get a happy ending.
The only positive in your Mum's situation is that you now know you have limited time to spend with her. It's very difficult but try to keep it together in her presence so she can have peace of mind. Make the most of every moment you have left with her. Clear your slate and create the memories that will help to get you through when she passes.
Life is not fair, that's for sure but sadly death is a certainty for us all and if you can make the transition peaceful and loving, it will help your Mum now and you later on.
My heart goes out to you Shirley, it is a very sad and taxing time for you all. Your poor Mum sounds very weak and at least now, she won't be stuffed around with and hopefully she is going to be made comfortable without anymore poking or prodding.
I hope it gives you strength to know you are being sent much love and positive vibes.
Stay strong
Deborah

Hi shirley

your mums time span is about the same as robs was.Diagnosed december,major surgery radiotherapy recurrance with lung mets in june.Rob was only 44 but they wouldn't offer us chemo or anything else.When we walked out of the hospital we walked straight into the care of macmillan and then hopsice.we only had three weeks so if you get a few months savour every moment.I suspect that like deborah and i and sadly too many others that as this disease progresses you will worry less about you losing her and more about her being pain free and at peace.

My thoughts are with you xx