very pessimistic

brunette · Posted: Fri Oct 27, 2006 10:37 am Post subject: very pessimistic

[color=violet][/color] Hello all, my mum had been diagnosed with a grade 4 tumour and is due to start radiotherapy with a view to chemo at a later date if necessary. The tumour is inoperable due to its position and has also fragmented.

I have been reading up as much as I can on various websites and Im afraid I am not overly optimistic about mums chances. My brother and stepdad however are under the impression that she will recover and live a good many years yet! Does anyone have any advice for me, how long can I expect my darling mum to be around?

I am so sad and dont know how I am getting through each day. I look forward to reading your replies, many thanks in advance xxx Brunette

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello Brunette~

So sorry for you and your family. It is a terrible disease.

Miracles DO happen, so I will add you to my prayer list.

You will find lots of information on this forum that may be of
help to you.

Take care~ Post when you need to.....

Kevan

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi

Sorry to here about your mam. I live in the uk and my husband has a brain tumor . Did the doctors tell you the type of tumor it was?

brunette · Posted: Sat Oct 28, 2006 9:45 am Post subject: thanks for your replies

Hi Kevan and Alocin, thanks for your replies.

Kevan thankyou for your kind words. Alocin, all I know about my mums tumour is that its a grade 4, I assume the doctor means it is a glioblastoma....but I could be wrong.

My stepdad is a bit vague sometimes when giving me information. Unfortunately my mum moved house a week after her diagnosis and now lives two hours drive away. I dont think I get all the info as she is trying to protect me and my siblings, however we are all fully aware of the implications of her illness.

Im sorry to hear about your husband, I dont know how anyone deals with this and stays sane. All my best wishes xxx Brunette

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi

It is very hard as you well know . My experience of the treatment with my husband is that here in the uk . He had radiotherapy for 6 weeks. They have to make a mask for the treatment with radiotherapy to the brain. My husband was tired with having to go to the hospital 5 days a week and waiting sometimes up to hour . The radiotherapy didn't make him feel ill and his symptoms improved. He started chemo when symptoms came back. He has had a good quality of life. He was diagnosed in feb 05 . Chemo does make him feel sick but the tablets to stop the sickness do help and it normally gets better after about 4 days of chemo and the chemo is 6 weekly so you do have time off chemo. I know only too well that it's hard for everyone looking after someone with this condition and it is hard for the person with the cancer. Take care
nicola

brainman · Posted: Sun Oct 29, 2006 4:55 am Post subject: Re: very pessimistic

Brunette, I am so sorry to hear about your mother's diagnosis. If it is a GBM, it is terrible. My mother died 8 years ago, 2 months post diagnosis. But by the time she started having any noticeable symptoms, it was too large to do much. She opted not to have any form of treatment. In her case, she just kept getting weaker. Soon, she was sleeping most of the time. Then she started having trouble breathing which made her sleep even more. After two months, she just slipped into the arms of God.

I will be thinking about and praying for you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

brunette · Posted: Sun Oct 29, 2006 2:31 pm Post subject: Re: very pessimistic

hello to all. Hi Brainman, Alocin and everyone else reading this thread. BIG hugs to you.

I went for a walk today,through the woods. A walk I had taken with my mum, my brothers and my children not 6 months ago. It was a beautiful day, the sun was shining and ordinarily I would have revelled in the gloriousness of it all.

However, all I had was a flashback of happier times, when my mum could still walk unaided and we laughed and joked. A happy family with no knowledge of the hard times to come. Everywhere I go, things I see and hear remind me that my darling mum may only have a short time left with us. I cry so much and the pain is too much to bear. If I am this sad now, even though mum is still with us, how will I cope later on.

I feel so negative. Is this a normal reaction? I feel like a total drama queen at times. As yet I havent really let all the tears out, I am too afraid.Anyway, enough of my ramblings... my love to you all xxx Brunette.

jackiekeefe · Regular Joined: 26 Oct 2006 Posts: 17

i feel the same way sometimes, it's hard to really believe that the world doesnt stop around you, i look at things so differenty now. I am having a different problem i havent cried since this is all started 3 weeks ago. I sometimes have tears but not a real cry i truly feel numb. Is that normal? i look at other people and that is all they do is cry, usually i am a very emotional person so it is all very weird that i am reacting so differntly, maybe i am scard to deal with what is going on scard i wont be able to pull myself together.

Jackie

brainman · Posted: Sun Oct 29, 2006 11:22 pm Post subject: Re: very pessimistic

[quote="jackiekeefe"] I am having a different problem i havent cried since this is all started 3 weeks ago. I sometimes have tears but not a real cry i truly feel numb. Is that normal?[/quote]

Jackie, there is no such thing as “normal”. We each grieve in our on way at the speed we need to grieve. It has only been 3 weeks for you and you probably are still in shock and maybe denial. Be kind to yourself and let the tears come whenever they come.

[quote=”jackiekeefe”] i look at other people and that is all they do is cry, usually i am a very emotional person so it is all very weird that i am reacting so differntly, maybe i am scard to deal with what is going on scard i wont be able to pull myself together.
Jackie[/quote]

If you are scared, you are not the only one. You are not alone, Jackie. Sometimes I think I will go crazy if I don’t get past my grief. I ask myself, “When will it ever end”? I curse God and hope to die sometimes. It is not fun or easy. I remember that when my mother died it took me several months to have one day that I did not think about her. The next day, when I realized that I had not even thought about her once the previous day, I cried, I felt guilty, I felt like I was a bad person. But then I remembered what Mom would have said: “I am proud of you, Jimmy. You were with me when I needed you most. It is ok not to think about me because you will always remember me.”
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi

I know what you mean I often think if only and think of the time my husband didn't have this horrible tumor. We are unable to do normal things people take for granted. I'd love to go on holiday even for afew days but we can't get insurance. We can't plan for the future. I don't want to be on my own with my 6yr old son but there's nothing I can do but live for today. I know that I'm lucky my husband is well today but it is very hard and I'm the one who gets upset my husband is so brave. I try to think of the good times but I'm not looking foward to christmas as it's hard to be cheerful . It is hard but try and make to most of the time when your mam feels up to doing things . Sometimes it does take your mind off things for a short time.
nicola

brunette · Posted: Mon Oct 30, 2006 5:16 am Post subject: Re: very pessimistic

Hi Nicola,
having read your replies, I realise that there are people out there that are worse off than me. How on earth are you coping? my heart goes out to you.

This might sound stupid but when I try to think about all the happy times I have had with my mum, it makes me feel worse. It hurts more to remember so I try not to....is that bad?

Also, as you say, christmas is coming up and my mum wants to go away somewhere. I know thats her choice and I must respect it, but I cant bear to think that we will have no more family christmases ever again. I must sound so selfish sometimes. Im getting to the point where I dont want to talk about it to my friends and colleagues because I dont want to bore them! Thank goodness I found this forum, at least I cant rant and rave and feel sorry for myself on here and know that others understand.

Much love to you all xxx Brunette.

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi burette

I know what you mean , sometimes if I think about things too much I just can't stop crying and that doesn't do anyone any good . I hate sitting in waiting rooms in the hospital as I just get upset when I think about things. I understand what you mean about talking to people . i think unless you are in a situation you don't understand fully, what it's like . I work shift which includes working bank holidays so I don't want to work christmas but it means someone else has too and I feel guillty but it's not only been off it's not feeling that jolly about christmas and having to put on a brave face at work when you sometimes don't feel like it at all.It will be hard for you if your mam goes away for xmas . you could have a christmas lunch with your before she goes or when she comes back and then she can enjoy some time with you all. Do you think she is wanting to escape xmas maybe she feels she can't face it. I know I sometimes feel like that .I think christmas is a hard time of year . I don't feel like shopping but I'll have too . I feel guilty as our youngest son loves it all. He keeps us going .

Take care nicola

jackiekeefe · Regular Joined: 26 Oct 2006 Posts: 17

Hello everyone,

i am so glad that i have this forum, because besides this i never really grasp what is going on i try so hard to stay focus but is so hard at times, i dont like to leave my dad's side. Today we go back to the hospital for two more appts and proably more bad news. We will find out how they will try to keep this nasty disease in control if they even can and also he has this other cancer called adenocarcinoma in his bile duct and liver which he had a catscan on the other day and depending on what cancer is the worst is how they will treat it as far as we all know they can only treat one of the cancers! how can this be! so in other words one will be treated while the other continues to kill him! what is the sense, you would think with all the donations from families to go to research that would have found a cure by now, hopefully in my lifetime. One thing i do know is as long as my father is here there will always be a chance they will find something to cure him.

Jackie

p.s. i hope all is well with everyone, thanks for all the posts.

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi Jackie,

I hope things were ok at the hospital for your dad.How did he get on?

nicola

jackiekeefe · Regular Joined: 26 Oct 2006 Posts: 17

Thanks Nicola! well again information that was not very good, his liver function seems to be getting worse, but they did suggest cyberknife for the Brain Cancer which seems to be afftecting much more especially over the weekend he seemed to be forgetting a lot more and seems very unbalanced, it is so hard to watch my dad go through this. Today we have a appt with the Brain Tumor clinic to go over treatment and when they are starting which i believe will start sometime this week so i am hoping the quicker they treat him the better he will feel.

What about yourself? how are things going?

Jackie

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