Hi, new here

Kris · Posted: Wed Sep 13, 2006 2:43 pm Post subject: Re: Hi, new here

Dear Chain,

All my prayers are with you and her - she'll be strong! Do you know what they plan for the post-surgery period as medication?

Unfortunately my Mum 's getting worse and worse from one day to the other, has no more energy to walk, her speech is getting worse ... only on palliative medications now it's her 54th day since diagnosis ...

I'll be glad to hear your news - God bless!

Kris

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi All ...

Chain ... sorry I haven't stayed in touch. Been at hospital with my husband this week. I am sorry about your wife's weakened condition, and especially the loss of her sight. I hope she can come home with you soon, and that you can share more precious time together.

Although Forrest has been declared "in remission", he is going down hill. We have now been told that the radiation effects are beginning to show up. That, we have been told, takes 6 months to 2 years to occur. Neurologist says that his brain is actually starting to liquify and literally trun to water. He is not talking at all now, and is still very weak. He doesn't seem to know what we're talking about lately, or either does and can't respond. The radiation seems to have done more damage to my husband than the actualy tumor itself.

I am thinking of you and your family Chain. You are in my prayers. God bless you,
Joy

Chain · Posted: Sat Sep 16, 2006 3:10 am Post subject: Re: Hi, new here

Hi Joy..

I feared things had not been going so well from your absence.
I just wanna give you a huge hug darlin, my heart goes out to you.

what can I say.

keep your chin up , I know you will.

My baby is home from hospital but just a shell of her old self.

Joy, life gets better, try to remain as positive as you can. In time the music will sound sweeter and the food will be easier to enjoy.

all my love to you and yours, Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Chain, your words touched me deeply. Thank you. Go put your arms around your sweetie and tell her that you love her. You both need that. I'm sure you do that often though. I am glad she is home with you. I hope you are both able to rest now.

Take care of you while taking care of her Hon.
God bless you ... you are a wonderful man. She and those babies of yours are blessed to have you ...
Joy

Kris · Posted: Sat Sep 23, 2006 2:34 pm Post subject: Re: Hi, new here

Dear Joy and Chain,

No news from you for a while...how are your beloved ones doing?
My Mummy is doing bad, unfortunately. Very bad.

I just wanted you to know that you are both in my prayers.

Kris

Sammict · Posted: Sun Sep 24, 2006 2:46 am Post subject: Re: Hi, new here

HI Kris, Joy, Chain & Qld girl,

My name's Sam and 3 months ago my beautiful Dad who is 58yrs old, suddenly had a seizure. He was rushed into hospital and given a cat scan when they found a massive tumour across his frontal lobes. They performed surgery, but were only able to remove 90% of the left lobe tumour and that's when they told us he had a grade IV GBM and prognosis was 6months.

He finished 6 weeks of aggressive radio & chemo just under two weeks ago. He was amazing through the treatment, no side effects apart from tiredness and mentally he was as sharp and witty as ever. However over the past week or so he has deteriorated rapidly. He is going through what they call "sleeping syndrome", which I think we expected after treatment but what we didn't expect was the mental deterioration. They had started to ween him off his steroids but then decided he needed to go back on and for a day or two he seemed to pick up, but now he is getting very confused again and coming out with some very bizarre things indeed. He is also starting to get very down about it all.

I live in London (have done for 6yrs), my family are in Sydney. I went to Sydney when he was taken to hospital and returned about 6 weeks later. Of course with the prognosis he was given, I was never going to be back in London for long. This weekend I have shipped most of belongings home and am slowly saying goodbye to the life I have created for myself here and I feel so very sad and scared about what lies ahead. I'm looking forward to spending time with my dad, but am terrified of being so consumed by this illness and getting lost in it that I sometimes feel like I won't cope. And I'm so glad I have found this forum, to know that there are others going through the same. You're stories have had me in tears, and some have made me laugh (needing longer arms:)

But you know in all his confusion there are amazing times of clarity. It's my mum and dad's 35th anniversary on Monday, and they were talking about it at breakfast, when my mum asked my dad "You'll have to let me know what you want (gift wise), what would you like?" and he replied "another 35 years". That makes me cry my eyes out everytime I think of it.

Anyway, this is a super long post so I will finish here. Thank you for reading and I hope we get to chat to each other.

Thinking of you all and sending all my love to you and your loved ones.
Sam

Chain · Posted: Sun Sep 24, 2006 6:06 am Post subject: Re: Hi, new here

Damn, not another one.... its like rust this bloody cancer thing and spreading like a bushfire..., Gday sammi, and welcome.... get use to crying, because you got lots to do yet. and you think your post was long, get a load of this little beauty....

Joy, I loved the myspace you posted and I must say your family is much bigger than I knew, and what a groovy and beautiful looking bunch of dudes you are. I have my own myspace but as yet, have not bothered to do anything with it at all.

and another fellow ozzie on board... Hiya Jenugl and welcome to our little corner of the forum. considering we are all brought together due to these horrible sad (insert expletives here) circumstances, youll understand when I say, I wish you werent here. But welcome.

OK, where am I at.......

rightio, after a re visit to the surgeon, we have found out that they did less debulking than they could of done, due to the fact if they had kept going, the chances of my girl being paralised in her left hand side were too high to risk. Theres a fine line between quality of life and life expectancy I guess, and if I had the choice, I would go with the quality option also.

She starts traditional chemo on tues coming, intravenous type, one day a week for the next 4 weeks.

She is fairly disorientated most days now, and only had one day where I could say she functioned 'normally' as such. On coming out of hospital as posted previously, they started her on 2 dex a day, but due to her growing tiredness, we have doubled that and it seems to have helped somewhat. However, in the last few days sleepiness has really kicked in and the standard attire is a dressing gown and PJs. If we go out we take a wheelchair for her as walking takes much out of her and quickly.

I just had 2 weeks off work, and I think it was greatly beneficial to our sons as they were beginning to show signs of questionable behaviour and mood, so that was a bonus cos I was able to spend some very good quality time with them and work on them so to speak. So all good there.
They are handling it rather well and they seem to have come to grips with the situation and have learned to accept the inevitable outcome..

her mental/emmotional state is weakening day by day and its becoming increasingly difficult to keep her positive. and thats draining. She firmly believes her time is close.

The following may seem strange or bizarre, or simply BS, but I assure you it is an accurate account of todays occurences. Make of it what you will.

At one point during the typing of this post I went in to check on her and she was having what looked like a panick attack. I asked her what was wrong and , she told me my late father was at the foot of her bed, holding his hand out to her. (He passed away in 1999 and he and my girl were the closest of freinds). I asked her what he was wearing and she said his bowls whites, (which he was burried in). I asked her how he was , weather he was smiling and freindly and warm or whatever, and she said he was happy and well, and eventually she felt comfortable with his "ghost" there. After a few more probing questions, she told me he had my slouch hat (army headwear) in one hand and some childrens drawings under his arm. He was burried with these items also.
A very noticable chill was present on the spot where she claims he was standing. I know this because for some unexplained reason, perhaps curiosity, I physically stood there and I broke out in goosebumps.

I told her to tell him I loved him.

Then I called my sons in, and straight out told them, say hello to poppy spike, he is standing right there...

They were perplexed but smiled and said hi and waved regardless, indeed a tad confused, but curious. According to my girl he grinned and waved back.

My girl said to me.... He wants you to give the boys a hug for him, and that he would be able to feel it. So I did. The younger of the two wept uncontrollably for no apparent reason. I felt blessed to experience such a special and extroadinary moment.

She told me he said he would be there for her when her time came, and this seemed to put her at an even greater ease with the situation she was experiencing with his presence.

After about 6-8 mins he began to slowly fade away until eventually he was gone. The chill in the room dissappeared and changed to warmth, matching the rest of the temp in the house again.

Right throughout this whole event, for want of a better word , her emmotions went from freaked out, to terrified, to laughing tears of relief. it was truly an amazing experience and one I felt totally at ease with. Somehow I feel it gave me the platform to convince her that everything was cool, and she could relax, and try to just do the best with what time she had left and that she had nothing to fear, but this is one of the biggest tasks of my life I can assure you.

In the last week or so I have had to attempt to convince her a few times that she has nothing to fear, as she is seemingly terrified of death.

I interperet this occurence as.... my fathers attempt to reassure her that she has nothing to worry about. But im still not totally sure how to interpret it.

Soon after, she got out of bed with a little help, sat down and had some dinner with us, then watched TV with us for a while and has just gone back to bed for the night. I will be following very soon.

Thats all I got for now.... Joy, Kris, Jenugl, Sammi.. all the best for now my freinds and my thoughts are with each and every one of you and your families. keep strong, there really is no other options and rightly so.

Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi Dear Chain ... and all our friends here. I am saddened to find that other's have joined, although I am glad for my sake. I am sad for you that have joined, for that means you are suffering, as are we. I am so sorry that so many must suffer at this monster's grip. So sad ...

Today was a good day. Forrest seems to be growing stronger. We spent 2 nights, 3 days in hosp week before last. Dr. says Forrest is in total remission. This is what they told us in July, as well. But ... it takes 6 mo - 2 years for radiation damage to show up. Forrest had 31 rounds of radiation and took Temodar throughout his sessions, in Feb and March. So the 6 month mark has just passed. Many new developments. Neuroloigst said that eventhough the tumor was gone, the brain is beginning to literally liquify and turn to water from the radiation. So ... he is ... hmmm, for lack of a better word ... challenged!

Very weak on right side. Has a very difficult time eating, can still not talk, has trouble walking, moving, and maneuvering. His right arm now lies limp most of the time. He favors his left side to eat with now, etc. He stares out at the humming birds on our patio. How I wish he could tell me his thoughts, share his feelings, tell me his heart.

I am anxious. I, like others, want to know "how long" we have. The oncologist told him to quit living to die, and start living to live ... for the "tumor" was not killing him, since the tumor was gone. The neurologist brought us the "brain liquifying" report the following day. I don't know what to think now. Is he going to live like this for years, is he dying, slowly, day by day? I know this may sound morbid. I don't mean to upset anyone. I just think life would be easier if we had a time frame of some sort. The oncologist gave me hope that Forrest might actually get well. The neurologist stole that hope away!

I can now manage to shower him better/easier. I feed him soft foods, for he strangles easily. Have to add "thick it" to his beverages to make them thicker to keep him from choking. Blood clots came back in his legs. His right ankle is extremely swollen. So I constantly worry about a blood clot leaving his leg and lodging in his lung, which can cause instant death. I worry about him falling, hitting his head and bleeding to death, since he is on blood thinners. I can no longer leave him for more than a little while at a time. I miss going to the movies, to church, shopping, visiting with others ... yet it is all easy to give up in light of being with him. How I miss our traveling together, him driving and taking me out to dinner.

My real world consists of worrying about no insurance, do I put him on medicade, do I wait until he qualifies for medicare, which should be soon. So many questions, so many fears, so much sadness ... yet I look into my children's eyes and feel hope swelling within me for Forrest. Oh I long for him to be with me to help raise our 8 yo son, and walk our 21 yo daughter down the isle one day. Two of our sons are in college. I want Forrest to see them graduate with their Master's degrees. It is so hard to plan, to hope, to go on like all is well! I know those of you here understand what I'm saying.

Chain ... I am concerned about you and your babies. You seem so strong, so brave. It is so good that you are there for her. Stay close to your children dear Chain. Allow them to comfort you by watching them play. Try to enjoy those babies and the time you have left with your sweet wife.

You are in my thoughts and prayers dear Friend,
Joy

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

I have been reading this post with interest, as my father has GBM since last Dec.

After his surgery and initial treatments, IMRT and Chemo, a new growth had appeared. He than had Cyberknife to help control that tumor.

I believe from july to now, the tumor seems to be stable, that is, not growing too much or at all.

I think it's important that the family know the realistic approach as to what will happen... reason, so they can spend quality time together, especially when he is doing well. For when he is not doing well, he won't be able to go out and do things and just have some fun family times.
My dad feels that he can be around for several years, and I think it's good for him to think this, but he also knows that this will be his demise. He is realistic and positive at the same time. He is 71 and knows he lived a full live, maybe that is the difference with my dad as compared to someone who is much younger.

For now we move on and just enjoy each day...

One thing to look for, as time goes on is alternative treatment... Perhaps the longer you live, maybe something new will come up that will work better than what they have. That is the hope you can lean on for now.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

jenugl and bc ... thanks for your replies. I am so sorry that you're having to deal with so much. It is so painful to see our loved one in pain.

My husband has a tumor called an ependymoma. It is a very slow growing tumor, which makes it different from GBM. They did tell us he had a GBM at first. It took a month to get the pathology from MD Anderson that read the tumor was an ependymoma instead. This means we have more time. But ... that time is not quality ... and is very sad and hard. My husband is weak, sad, has not much strength or coordination on his right side.

The tumor grew back more than 100% in a year. The neurosurgeon got 99% of it this past Jan ... but we followed up with 31 rounds of radiation and Temodar, which is an oral chemo. It is the radiation which did the most damage to my husband's brain. His good cells were killed, along with the bad ... and unless the Lord above allows a miracle, he will never recover/be the same again. The quality of life is greatly effected after radiaion/chemo.

God bless you ... Reader ... for if you are reading this, you are most likely living with this monster in your life. God bless you, and yours,
Joy

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

Hello Chain, Joy. How are you doing??? I try and keep up with the boards daily. I am sorry to see some new people posting having to deal with this disease.

CHAIN~ I read your post about your wifes event "seeing" your father. I believe every word of it!!
Somewhere on one of the links on this forum I posted my own experience I had 6 months after my Dad died. Can't remember where I put it. Maybe you'll come across it and read it. I also have had one other experience 28 years ago when my husbands mother died. I firmly believe these things happen.

jenugl, sam and bc ~ Nice to meet you, but I am sad it is under these conditions. I lost my Dad 10 years ago. I still keep an eye on GBM stats to see what progress is going on. I also will share my experience so others can see a bit of what they might expect. 10 years ago I had no one to talk with. I'm so glad there are places people can go to look for help or just someone to talk to.
I do think getting other opinions and keeping abreast of new treatments available is so important. You never know what might be available.

Keep in touch.

Prayers for all of you!
Kevan
AKA vintage

Sammict · Posted: Thu Sep 28, 2006 7:01 am Post subject: Re: Hi, new here

Hi All,

Thanks for your kind words.

Well my Dad seems to be deteriorating rapidly. He is now "not with it" 90% of the time and is becoming more of a danger to himself. He's recently become obssessed with scissors and cutting everything up and has started to smoke in the house (which he never does) without an ashtray and ashing on the floor, he's also been trying to take my mum's tablets. My mum is beside herself thinking he may burn the house down or cut himself or her, and has now taken to having to hide everything from him. He had a fall yesterday and also lost control of his bladder.

It is all just so sudden, he finished his radio/chemo two weeks ago and up until then was pretty much himself, but within 2 days of finishing he has just nose-dived into someone we don't recognise. We asked the community nurse if this could be a side effect of the radiotherapy and she said no and that it was the tumour - which basically tells us the treatment has done nothing or very little. However, I did some research on the internet yesterday and found that following radio, symptoms can worsen before getting better, I also had this confirmed by a cancer nurse in London. So I'm quite annoyed that she gave us such a definite answer, taking our hope away before he's even had his MRI scan.

They also started to ween him off his steroids after treatment but when he started to get confused put it back to his full dose, which seemed to work for a few days, but he's gone down again. The consultant has today tripled his dose of steriods in the hope that we see some change in the next week, if that doesn't work then they will take him off them. Has anyone else experienced similar problems after stopping treatment??

Hope all is going as well as it can for you.
Sam

bc · Experienced user Joined: 11 May 2006 Posts: 54

hello,

When my dad finished his 6 weeks of radiation and chemo, he was doing well. Than he had the MRI and showed some new growth. They say that is not uncommon that growth would be there after the initial treatment and that follow treatment would most likely be needed. He had surgery prior and had the tumor completely removed.

He had some changes with language skills , right before he had the Cyberknife treatments.

They weaned him from the steroids and had a seizure when he was taking 1 steroid a day. Turns out the anti-seizure medication (generic drug) wasn't working, so now he is taking the real drug. They can do a blood test to make sure his medication is working.

My dad has general confusion from the tumor that is there, and steroids are used , either 2 or 3 a day. I think he goes back and forth, and the Edema is the issue and can cause changes in someone.

He had the cyberknife in july, and now it looks like the tumor has not grown. It grew a little right after the cyberknife, again they say that is common.

I think I would insist on an MRI, to determine tumor growth/edema and use that to help with what medication/strength he should have.

If there is new growth, I would inquire about cyberknife/gamma knife, if it's not operable.

Your dad may always have some level of confusion, but now it's about getting it under control and manageable.

Hope this helps

Kris · Posted: Tue Oct 03, 2006 3:16 pm Post subject: steroid

Dear Sammict,

I join the others prior to me saying hello to you, but what a pity you have to be here... I hope you'll find some help by reading our posts, I'm literally "relieved" by sharing this monsterous experience with all my friends here.

When my Mum was diagnosed with her inoperable GBM (right lobe) on 20 July, I felt completely lost and could not stop crying hard for several days without a break... now I'm still crying a lot, but at least not feeling totally alone in the world with this terrible sorrow.

As I said to Chain, bc, vintage, cgForrest, Michele and Jen before, my Mum's tumor was so much advanced already growing into the corpus callosum tending towards the left hemisphere that we had no surgery as option, but radio and chemo could also not have brought too much of hope - we wanted her in the best quality of life as long as possible so we opted for palliative care. (Her doctors gave her only weeks, or a few months left...)

Now it's for 2.5 months that she's been on steroids and fentanyl patch only. After several trials to titrate the steroid dose that would avoid her having headaches (as bc said before, swelling around the tumor can be reduced by steroids), they decided to put her on 3X daily i.m. steroid.
Then they started to reduce the dose to 2X daily, then now she's only on 1X i.m. injection in the evening.

Her face became "round" due to steroids and her left ankle is extremely swollen with bad circulation.

She slowly started to lose her physical strength, started to move very slowly and now, today, she's practically not capable of making even two steps - she falls like a doll who has no life in the legs... above this, she started to lose her short-term memory, though her long-term memory is still sharp and intact.
But when the steroid dose was reduced to 1X, she started to have headaches again and that is terrible for her, for us to see...so, they doubled the dose of her fentanyl patch (Durogesic 100 microgram per hour) against the pain.

She also lost her control over her bladder, I could rather say she became completely incontinent.

She's also not feeling when ashes burn her skin when smoking, as trembling hand and weak concentration leads to cigarette falling out of her hands - she almost burnt a pillow in her wheelchair so now there's always someone carefully watching her when she's smoking.

She needs 24-hour assistance, so we have 2 Hospice nurses taking care of her, one for the day, for for the night. As I live far from her - I'm living in Geneva and she's living in Hungary, I try to fly there every 2nd week-end, but it's extremely hard as I have to manage my life here- 2 kids and husband, work - but my heart and soul are constantly over there with Mum. Fortunately all the other family members are there with her.

This is a mixture-reply to several of your posts, I'd also like to address the terrible feeling of not knowing how long will this still go on, how long she'll still live...just after the diagnosis, they gave her weeks or max. few months...now seeing her deterioration so quickly, I'd prefer that this should not take long. I know you'll all understand what I mean...

What I'm scared of the most - what if I can't be there in her last moments due to the distance that separates us...

As I have no hope left, the only thing that I can go on doing is embracing her with my love, embracing her and caring for her as if she was my little baby - some years ago she was caring for me and changing my nappies, and now the roles are the opposite....I love her so much, so strong, so eternally.

You're in my prayers all.

Kris

Chain · Posted: Sat Oct 07, 2006 3:16 am Post subject: Re: Hi, new here

well, I have gotten a bit slack.
I have been looking in, but not posting. Sometimes this place just depresses me too much.
Things are going OK, my girls sight is poor, she is slightly wonky on her feet, and had more good days than bad days. Shes on 4 dex a day.
We have reading at nights , where we take turns in reading the newspaper for her as she can no longer do it herself.
Im getting over worked and underpayed and dont get enough sleep, and when I feel Im getting to agro, I have a big sleep and it tends to chill me out. Music sometimes makes me cry, the last song that did that was dobie gray, drift away.
her spirits are good and she is no longer terrified of death. she has once again found her beautiful smile and sence of grace irrespective of the irregular headaches and tiredness.
She has had one cycle of intravenous chemo sinse I was last here, but the day she was meant to have it a couple of weeks ago, was delayed, due to her being too sick to handle it, but aftwer being admitted on the day, and spending 3 days in hospital, she had the chemo and took it well. Her next scan is onthe 9th, and her next chemo at this stage is on the 16th.

She is also *(sounds terrible calling her she all the time) recieving palliative care when we need it, a nurse is on call 24/7 to come to our place and deal with things that we might otherwise have to take her to hospital for.

OK thats all for me now.

Joy I hope all is as well as can be expected for you guys, and I think of you often,.

all my love, Chain.

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