Hi, new here

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Chain ... I'm so sorry for what you and your family is having to endure. I wish there were words to comfort/help. I'm glad you wrote ... please stay in touch and keep us updated.

My two oldest sons are leaving for college. 29 yo son left last night for seminary. 18 yo son leaves Sunday for college, got a scholarship. My 8 yo started to school today. I feel alone, afraid, so discouraged. Hubby is always about the same anymore, but that "same" is so weak on his right side, no speech, no communication ... he just sits like a very old man in his chair watching the box all day, every day. I am grateful he is with us, but he is so sad, so depressed, so weak. It is a very hard way to live Chain.

God bless,
Joy

Chain · Posted: Thu Aug 24, 2006 2:58 am Post subject: Re: Hi, new here

8 weeks ago or so, an mri scan showed , what the surgeon discribed as, 'remission is a good word'.

my wife was taken into hospital with some tingling and numbness down her left side about 2 weeks ago. She had a 5 night stay and a new mri scan has revealed a second tumour beside the existing one about 1.5cm round.

The surgeons seem rather sceptical about operating.

a few nights ago, my 11 yr old son came upto me and asked, 'are we playing cricket this season dad?'

'do you want to ?', I asked..
'yeah', he said.....

I said, 'friday night is a bad night mate cos I get home from work super tired on a friday night, and soon, mum might be too sick to take you'.

his knowing responce, as what I feel was the moment the realisation hit him of his mothers condition was... 'anywhere?'
we sat and talked and hugged and cried together for quite a while.

so we wait to see surgeon again, with 2 other surgeons, and they want to discus the dangers discribed as 'of concern', faced for this op.

the other option offered to her after the first meeting was a course of experimental drug treatment. She wants surgery.

bye for now, Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Chain,

The kids are absolutely the hardest for me. I am so sad.

New "activity" was showed on Forrests last MRI about a month ago. Doctor doesn't know what it was ... ugh! Another MRI will be done in about 3 weeks. Husband has regressed, is falling more ... can hardly hold his fork at this point. I am discouraged ... and like I said, so sad!

I think he's having "focal" seizures ... many of them. I am just learning that word ... but believe that is what I see. He feels so useless ...

What will this Christmas be like ... will me and my 8 you spend it without Dad? Cannot travel anymore. Cannot leave at night anymore. Can't leave child with hubby anymore. An 8 you should not have to baby sit their dad. It is all so ... awful.

I feel for you Chain, and your kids ... and me, and mine! I also feel for our mates. They are so brave, scared, and my husband is ready to give up. I sense it .. I feel it ..

God bless you and yours,
Joy

Chain · Posted: Sat Aug 26, 2006 4:26 am Post subject: Re: Hi, new here

hiya joy...

wow what a week. I think I cried more in the last week than I have in all my life . That boy must have triggered something in me.

So theraputic, yet I feel as if im not half done.

We are so on top of life, yet they arent.
I wish our children didnt have to grow up so tough.
I have learned more about love and parenting in this time than I ever knew.
I wish I had more pics and footage of us before she got sick.
Taking pics etc is so difficult now.
I wish she wasnt going to miss so much.
Damn damn damn

She is as beautiful now as she ever was.
Her character and strength I am in awe of.
She holds her chin high always and her presence glows.
I have never met another person who carried themselves with as much grace and poise and respect as she does during such struggle.
And all this, often in a dressing gown for comfort.
Sitting down for dinner never meant so much. We always did it but its so much more special now.
We have a laugh about her hair, and ears sometimes.
She could now eat a horse, regularly.
The kids still annoy her sometimes.
She is my darling wife and I love her.

bye for now, Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Chain,

Your love for your wife blesses me and is so evident in your words.

My husband is weakening, almost daily. There is a sadness I have come to known, that compares to no other in my life. There is no hope ... but yet I must hope. Hope is all we have ... is it not? I hope, I pray, I wish, I believe ... and in it all, I am falling more in love with my husband every day.

Today he tried to shower, and could not. Has not in several days. I insisted on it. He stood in the shower, but it was all he could do ... could not bathe himself. So, I helped him on a stool that fits in the shower, and stepped in ... in my pajamas. He layed his head upon my chest as I washed his hair, his face, his body. It was a bitter-sweet time. Then I dried him, and doctored his sores. His skin is so thin, his body is so weak, his right side is so weak. Soooo sad. So lonely. So scared. I never knew life could be like this ...

God help us. I miss him terribly. I miss his strength, his beautiful voice that is now gone, his wonderful mind that had a genius IQ. I miss my man, yet I love this man as I never did the other.

I am sure you feel some of what I do Dear Chain ...
I thiank God for this 8 yo son of ours. I don't know how I'd make it without him.

God bless you and your precious family,
Joy

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

Hello Joy & Chain~ Just read thru the updated posts.....I am so very sorry to read your situations. I went thru this with my Dad in 1996. It was 13 months of saying goodbye.
I can only tell you that i pray for all of you.
I know how hard it is with the children....Mine were the ages of yours, but it was my Dad, so it was their Grandpa. Very difficult time.
Just be there for them, hug them, and love them.
One
thing, the last couple months my dad lost his ability to speak.
I didn't think he could read anymore either, but was never really sure.
I showed him pictures and would read to him. My daughters had each written him a letter telling him all their memories of him being their Grandpa. (He was living in another state, so I would go visit him as often as I could)
I could tell how much he loved this time with me, even tho he couldn't say a word....
I would encourage you to keep talking with your spouses.
Blessings to all of you.....

Chain · Posted: Fri Sep 01, 2006 3:37 am Post subject: Re: Hi, new here

yes, never knew how sad one could get is not wrong, even when you do your best to remain cheerful.
hiya vintage welcome back, nice to read you again. and we must keep talking to our spouses for sure, great advice I thought.
joy I just noticed that I dont think I ever expressed any thoughts toward the situation you and your man and little bloke are in.
rest assured darlin, my heart goes out to you, right out and I feel that pain. Its good to know what you are going through in a way , because it MAY give me some insight as what to expect in the future. I liked to be ready for shite like that, I hate rotten surprises.
I miss my baby by the time Im 2 mins up the road on the way to work.

shes getting along OK for the moment but status quo, still no word from any surgeons re a meeting we are supposed to have, and that annoys me.

bye for now.

Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Guys,

Just wanted you to know that I'm thinking of you tonight.

Forrest has a dr appt and yet another MRI on the 15th. I'm very anxious about this one. I'm scared to enter the holiday season, which is just around the corner really.

It was 3 days after Christmas, two years ago, that we learned of the awful news of a 4+ cm tumor that must be removed. His surgery was in Jan '04. The monster returned, bigger than before, and made a grand appearance with another surgery taking place Jan '05. So this MRI has me scared. I am hoping we won't be facing another new year like that last two.

The leaves are already falling here, the temps are lowering ... and with it the dread that I may hear that the monster has, once again, returned. The toll it has taken on this family has been so hard.

Chain, how is she? I mean, really? I am concerned and think of y'all often,
Joy

Chain · Posted: Sun Sep 03, 2006 7:42 pm Post subject: Re: Hi, new here

shes mostly cheerful, and active, carrying on with life as normal.

She is forgetful, and clumsy at times, dropping stuff regularly. Nothing major. Deals with the odd headache maybe once every two days.
and she is deffinately anxious to here from the surgeon.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Sounds like she's doing okay Chain ... however okay can be with this monster.

Good to hear from you ... give her a hug from me!
Joy

Chain · Posted: Mon Sep 04, 2006 7:58 pm Post subject: Re: Hi, new here

shes gone downhill in the last day or so with an unstoppable headache and im just in the process of getting her saddled up for a trip into hospital. Had to assist her going from bed to toilet/shower etc over the last 24 hrs...so I think she will be in for a little stay. Still no news from the surgeon, maybe this will hurry him along somewhat.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Chain ... keep us posted Hon. These things are so darn unpredictable.

Yesterday Forrest started shaking. His whole body was shaking/trembling. I begged to take him to the ER, but he wouldn't hear of it. After a couple of hours the trembling stopped ... but I can't imagine what that was all about. Forrest falls ever other day or so. He shuffles through the house, holding his head up high, pretending to be okay. I think we all know how evident it is that his right side is extremely weak. He is still a proud man.

His speech is somewhat improved, but I can seldom understand him. It is all just so sad. Chain, I am afraid that he won't make it through the winter. The past two Christmas seasons he has had surgery. Maybe I'm just paranoid ...

Anxious to hear back from you. Hope all is okay,
joy

Chain · Posted: Tue Sep 05, 2006 4:23 am Post subject: Re: Hi, new here

just keep strong and get BE happy about the approaching christmas WITH him, like you normally would. Take it one day at a time.
He shows strength, allow him use that strength...... and you will find this recharges your own strength.

My girl is in hospital tonight, awaiting another MRI and according to her, whilst smiling warmly with her morphine injections, headache free.... they may operate tomorrow, depending on what amount of swelling or activity this new scan shows, but I aint holding my breath.

will keep you posted... Joy, make him smile darlin, make him smile every day...

Chain.

Kris · Posted: Tue Sep 12, 2006 1:31 pm Post subject: Re: Hi, new here

Hi Chain,

I'm following your discussions with Vintage and cg2Forrest - I'm with you in thoughts and prayers. My mum has GBM diagnosed in late July - inoperable- and therefore we opted for palliative care. She's on steroids and fentanyl patch and has no pain, no headaches at all. Unfortunately she's very weak physically, hands trembling and muscles weakening day by day.
I sadly hear that your spouse is on morphine injections - has she been previously on i.v. or i.m. streoid plus fentanyl patch? The first reduces edema and swelling in the brain, and the second delivers constant analgesic effect through a transdermal patch.
I hope she'll get better very soon - she's in my prayers.
Kris

Chain · Posted: Tue Sep 12, 2006 6:22 pm Post subject: Re: Hi, new here

Hi Kris..
the steroids my wife is on are tablet form, dexmethasone... and the morphine is only used for serious pain and isnt administered full time.
Its now wed morning the 13th and she had surgery on the afternoon of Monday 11th and woke up in recovery at 10 pmish. The second tumour to be debulked had gone from 1.5 cm to 4 cm in about 3 -4 weeks.
She seems to have lost most of the sight in her left eye and its still too early to see what affect it has had on her normal physical functions.
She is very weak and can only walk a very short distance and still cannot chew food properly.

bye for now, Chain.

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