Hi, new here

Chain · Posted: Thu Jun 01, 2006 5:50 am Post subject: Hi, new here

Hi , please allow me to introduce myself.
Im a 36 yr old ozzie guy from melbourne, two sons 9 and 10 and a step daughter 20.
My wife of 14 years was diagnosed with a grade 4 glioblastoma in early december last year. They say it took 3-4 months to go from microscopic to its then current size. In hindsight, knowing what I know now of the signs and symptoms, I dissagree, I estimate it took 18 months - two years. Doctors gave her 12 months to live. She had 6 weeks of radiation and 6 weeks of tablet form chemotherapy (temadol) at the same time. Doctors told us the chemo she would be on was an experimental form, I guess temadol is a newish thing, I dont know.
The scans at the end of this first lot of treatment, according to surgeon and oncologist, were excellent. They upped her life expectancy to 2-2 and a half years. Kind of bitter sweet really.
She is now nearing the end of a 6 month course of chemo and her next MRI is at the end of this week. She has tolerated the chemo brilliantly both times, though the radiation knocked her around a fair bit. I am still in the process of weening her off the dexmethazone. Doctors tried to get her off this steriod too quickly in my opinion and this was a huge setback to her quality of life, to the point she was bed ridden on bad days, and house bound on good days. so we decided we would handle that ourselves. That is almost done and seems to have been a successul venture. She has functioned pretty much normally since we made this desicion.
On the alternative side of things, she takes goji juice. a health drink that costs me a small fortune. Does it do wonders like it claims ? I have no idea. I hope so and I am babbling on too much.
I talk to a couple of different close freinds about our situation often, but it never feels like I ever fully get it off my chest.
When I first saw this forum, I was instantly hit by a gentle wave of emmotion, and the realisation that it would be one of those forums filled with stories, thoughts, and ideas of sadness, tragedy, hope, love, anger, frustration, relief and any other emmotion you care to mention. I, like all others on here no doubt, have been through all these and more, and will continue to do so whilst dealing with such a dirty rotten cruel bastard of a disease. I have cried so much with her, but I feel we are yet to scratch the surface.

I am very glad I found this forum and look forward to spending more time on here.

Thanks, Chain.

edit: tumour size when first found... 4cm.

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

Hello~ I'm sorry to hear of your wifes illness. I too have been thru what you are going thru. I lost my Dad New Years Eve 1996 after a 13 month battle with GBM 4.
It is such an awful disease. Even after all these years, I still read up on the disease and see what treatments are going on and if there has been any progress in treatments.
Your message hit home with me because I so well remember the lost feelings
I had. Seemed no one could really understand completely.
If you need someone to talk to, I'm here......

Vintage

Chain · Posted: Sat Jul 01, 2006 6:30 pm Post subject: Re: Hi, new here

Hi Vintage, very nice to have you onside.
Well, sinse my first post, she has had a new scan and it has revealed no growth in the tumour. I asked the neurosurgeon if this was remission and she smiled and said "remission is a good word". However this is not expected to have much affect at all on her life expectancy, they give her 2 years tops.
That was a monday. On the sunday (the day before), my wife had a siezure I guess you could call it, where, after having enjoyed months of quality of life, she lost co ordination, couldnt open a basic coffee cannister, after assistance missed the coffee mug by 6 inches, couldnt think, became slightly pannicked and confused and had suddenly developed a headache very akin to the one she had on that first terrible morning (but no where near as bad).
Will I take her to hospital or wont I ? will I or wont I will I or wont I?
She was going in the next day anyway, so after discussing it briefly with her she was adamant that she could wait.
After some quick studying and reading, I come to the conclusion that she was suffering side affects from the chemo, and delayed side affects from the radiation. After recieving the news of the latest scans, the hospital admitted her for observation just until these side affects subsided. She quickly improved and was discharged after 2 nights With more armloads of tablets and assorted medication to combat any further siezures etc.
She has been on chemo from the start. Originally a 6 week dose (5 days a week for 6 weeks straight) and now takes chemo 5 days out of each month, ongoing. The ongoing chemo is 3 times the strength of the first 6 weeks.
Its a hell of a way to live and a very tough way for little boys to grow up but we continue to discuss all aspects of the situation as a family and where possible, make light of it. If we cannot make light of it sometimes, we would go crazy.
Its a real bastard trying to keep in a routine and go to work always having it in the back of your mind that the chances of being suddenly called home are higher than average.
The ongoing support from my employer is incredible, and the flexibility and understanding they afford me is sometimes overwealming.
Daily, at some point, when you have a lot of time to think (as truck drivers do, I drive local btw, not interstate) you often feel like its slowly getting the better of you and you are loosing your marbles, but you just pull it together and continue along and try to remain as emmotionally solid as you can. You have no choice.
Another struggle is how the whole situation affects the small children, you have to keep a close eye on them, and make sure as best you can that they are not having problems from trying to deal with the reality that mum is dying. They need regular guidence and help in understanding and re assurance or else they struggle greatly.

more later.

Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Chain,

I hope you get this and can reply soon. My husband also has a BT. He was diagnosed in Dec of 04. I agree with you, it has been a night mare of a life!

My husband had a 4+CM ependymoma. It is not malignant, but still devesting and will one day take him from me.

I also have an 8 yo son that I am heartbroken for.

I would love to correspond with you concerning the above.
I understand how heartbroken and grieved one can be when trying to manage a devil in their lives call brain tumor.

Warmly,
joy

Chain · Posted: Wed Jul 12, 2006 12:07 am Post subject: Re: Hi, new here

hiya Joy welcome aboard,

well, since last post we have had a clean out of the medicine cupboard and she has been placed on a whole new batch of "stuff" to help deal with the seizures and headaches etc, including 20 Mg of morphine a day tablet form. I see a very slow deterioration in her facial appearence and lifestyle. She spends a little more time regularly sleeping during daylight hours than she has in the past. The morph really knocks her out.
We talk about things we never would have dreamed we would talk about before, and in a way, it has brought us closer together, I guess you tend to take time for granted until your struck with the notion that it is now limited. Sometimes these talks are very emmotional and sometimes very light hearted. My younger son has shown need for some gentle professional couselling , through school, where he has developed a short fuze at times lately. I have confidence he will learn to open up a bit more and get things off his chest.

bye for now.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Nice to talk with you Chain. I am sorry that your wife is in such pain. It is so good that you guys can actually talk.

My husband's tumor sat right on his speach center, so we have no form of communication any more. It is so sad! I never realized how important it was to communicate. Guess I took it for granted?? It is good you and she are closer and that she can talk/respond to you.

May God surround you with his peace at this time,
and to your children and wife,
Joy

Chain · Posted: Mon Jul 17, 2006 4:27 am Post subject: Re: Hi, new here

we went back to see the chemo specialist today, and she will begin another month of chemo as of tomorrow.
he and I had an arguement.
every time we visit him, he stipulates, there is no magic cure for this condition, as if that is what we seek, and it isnt, we know theres no magic cure. and it always makes me wonder why he says this.
also, when he asks questions, there has been times when I have added to my wifes answers, in order to clarify, or be more specific or accurate so as to hopefully assist him in his decision making, or the direction he takes with her medication.
more often than not, I have gotten the feeling that he isnt intrested in what I have to say even when my wife has concurred with me and felt as if he has looked me up and down, making me feel like insignificant. Then he comes out with, "I think a large portion of your condition to date has to do with the fact you are yet to get your heads around the situation".
This comment bothered me.
I asked him if he thought we expected a magic cure and assured him this was not the case, and yes, we have got our heads around this situation to the extent that we do not have unreal expectations of her inevitable outcome. "Why are you both here seeing me today", he asked. I replied that we just wish to continue on with her chemotherapy treatment as best we can, in order to give her the best quality of life she can have with whatever time she might have left.
Then he flew off the handle. "oh my goodness I do not need your anger, and if you dont wish me to speak, then I wont, if you dont want to know whats going on, then I wont bother bla bla bla"
he became super abrupt and his holier than thou attitude made me want to punch him as I sat there listening calmly. then he flew into this speel saying if we wanted to change doctors that would be fine, we could go to another hospital and continue with my wifes treatment elsewhere bla bla bla. he began to scribble stuff in her med file and I wondered if it was some code the medicoes use to warn other medicoes of a possible difficult patient/partner. He basically went on to tapdance around the fact he didnt want me back there and hurried through the relevent paperwork and ushered us out.
So I told him he was a dickhead and we left.
My wifes next stop was the blood test people, which is normal prior to continuing on with the chemo. Without fail in the past, this doctor has called up that day with the results, and given her the go ahead, or, alternatively, told her to wait one week before continuing on. Today he didnt call.

The next visit should be a hoot.

until next time. Chain.

Chain · Posted: Mon Jul 17, 2006 4:35 am Post subject: Re: Hi, new here

[quote=cg2forrest]Guess I took it for granted?? [/quote]
Hi Joy...
I sense you felt a level insult from this comment you made... "Guess I took it for granted?? ", stemming from my comment "I guess you tend to take time for granted until your struck with the notion that it is now limited."

Incase you did, I never meant you personally, I meant as people living carefree lives, we tend to take time for granted until something happens.
My poor choice of words and deffinately no offense intended.

be cool. stay strong. Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Chain,

You insult me? Nah ...not at all Hon! All is cool!!!

I couldn't help but get tickled about your feelings with your wife's dr. I have felt pretty much the same way at times. I feel so in the way. The thing is, I think, that they are frustrated because they simply don't have a way to deal with this stupid BT thing! I mean, all cancer is bad, but you can live without a breast, a kidney, a lots of things, but you can't live without a brain!!! It is so difficult for the dr to treat ... and it appears to me that they feel like they have failed ... even before they start, for there is no cure, just a little extra time. They also realize that the quality of life that brain tumor patients have is sometimes really sorry. My husband has had two brain surgeries, for crying out loud. So basically, he is a brain damaged mess of a man. I love him and will give him my all, but I have lost so much from this thing, as well as he has ... not to mention what our 8 yo son has lost.

All of the above is very sad and leaves one feeling so helpless. There is no hope for recovery!!! That is so sad. Loss of our loved one being as they were when we married is such a sad reality. You are on overload my friend ... I am on overload, so is our babies, and our spouses.

The enormity of failure and loss the doctors feel has got to be such a huge burden for them to carry. When we begin to ask reasonable questions and long for answers that cannot be given, hope that cannot be given, they do not respond favorably. I have dealt with this too. I have learned to lean on my own instincts and my own research. I have learned more through my own research than by any doctor. Truth is my husband is the first ependymoma patient our doctor has ever had. I had to tell him about it!!! He learned from me and my research! Go figure!!!!

Have you looked into e-mail groups on brain tumor patients/care givers? There are many out there. Perhaps they can give you the support you so badly need dear Chain. I know this has been my only link when I felt I was the only person on the planet that had a spouse that had to deal with a BT.

God bless and help you,
Joy

Chain · Posted: Sat Jul 22, 2006 8:19 pm Post subject: Re: Hi, new here

I think he is just de sensitized and has formed the habit over time of treating people like cattle

ReikiLady · New User Joined: 16 Jul 2006 Posts: 1

Hi Chain,

I sent you a PM last week with a lot of info & a contact in Australia - have not heard from you in a reply PM or seen you on the board. Just stopped in here to ck & saw that you had been back & posted. I am wondering if you had ck'd your private messages & gotten the one I left.

Hope things are going better & you're finding the help you need.

blessings ^0^

Chain · Posted: Mon Jul 24, 2006 3:51 am Post subject: Re: Hi, new here

howdy RL, yep got the PM and a thousand thanks to you, I just havnt got around to looking into any of the sites yet prolly cos Im a workaholic and the majority of my time at home is spent asleep.
still have the pm and will find the time to do some looking asap.

Her last round of chemo knocked the hell out of her but now she has come good again. Might send her out to get a job if she keeps it up.
We just have to deal with this rash she has gotten.

meh....., if its not one thing its another.

appreciating greatly all the support from you fine ladies.

sincerest thanks , Chain.

Chain · Posted: Mon Aug 14, 2006 4:29 am Post subject: Re: Hi, new here

my wife was taken to hospital on thursday night, with numbness and tingling in her left side, and a niggling stabbing headache. Didnt seem too serious, as these are from what I can tell, some of the more serious side effects of the temadol. she was well enough. That was 4 days ago. a new MRI has shown she has developed a new 1.5cm tumour beside the existing one, like 2 seperate mushrooms sprouting from the same base.
turns out the temadol didnt do as well as expected, and we are awaiting further information regarding more surgery later this week.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Oh Chain, I am soooo sorry! You never can tell what to expect with this. Temodar was given to my husband while taking radiation. They also wanted him to take it 5 days a month ... but it kicked his tail when he did. He'd take the stuff and then take 3 weeks of the month to recover! There was only 1 good week of the month left, and he was still weak then ... so he opted not to take it anymore at this time.

His right side is so weak that he has a hard time feeding himself, cutting his meat, lifting his hot coffee cup, etc. It's just such a sad thing to watch my strong man, who has always provided for us, comforted me, played with our little son ... getting weaker all the time. Although they say the "cancer is stable", they say the MRI done about a month ago showed some activity! What he heck does that mean, you know? Is it neucrosis or what? Well, they don't know! *sigh* And did I mention he's fallen twice in the past couple of weeks? That right foot of his just drags along sometimes .... ugh! Why can't they tell us something? And if the tumor is growing again, I wish they'd tell us. They scheduled another MRI for 5 weeks from now. Well, what the hey for if the thing is "stable"?????

I suppose I should be grateful, for he is still able to care for himself at this point, but it's very frustrating when you feel you are treated like a number all the time instead of a person! I so agree with your being treated as "CATTLE" analogy!

Sorry Chain, just venting here! Please ... you vent too ... and please keep us updated on your wife. I'm so sorry that you guys are suffernig so. I'm rootin for you Guy, and saying a prayer for strength, wisdom and courage for you and yours today,
Joy

Chain · Posted: Tue Aug 15, 2006 6:32 pm Post subject: Re: Hi, new here

The word from surgeons this morning is might.

She might come home today.
They might be able to operate within the next two weeks.

I might start to think they are giving up on her.

I might feel like throwing punches.

Cos Im deffinately getting frustrated.

like, FRENCH WOW.

I might have a drink.

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