| Author |
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
 Posted: Sat Sep 23, 2006 2:30 pm Post subject: steroid |
 |
|
Hi bc,
This is excellent news, I'm truly happy for knowing that the last MRI of your dad was OK!
May I ask you, please, if your Dad had/has no side-effects of the steroids? My Mum is still having i.m. dexamethasone - after diagnosis they started with i.v. steroid 3X a day, then they put her on i.m. injections 3X daily, and now since edema started on her face, she gets i.m. injection only 2x a day. I'm very much worried for her face looking like a balloon, same edema on her wrists and ankles, and also has a huge belly - apart from these parts of the body, she's very very skinny....
So painful for me, for us, and obviously for herself to see what she became only within 2 months after diagnosis.
I wish lots of strength to your dad! I wish he could do as many things, exercises as he can in this calm and good period, it will go perfect, you'll see. CyberKnife is a real fantastic thing, I'm happy he's doing fine and coping so well even with the chemo.
With friendship,
Kris |
|
| Back to top |
|
|
|
bc
Experienced user
Joined: 11 May 2006
Posts: 54
|
| Posted: Sat Sep 23, 2006 2:47 pm Post subject: Re: GBM _ |
|
|
thank you for your wishes.
My dad is taking 3 steroids a day, on the last report it did say extensive edema - I think that is the hardest thing to control... of course the tumor as well, but edema is an issue.
He has a slight puffiness around the face, but that is it. He has more of a belly, but that is because he is eating more calories to offset the chemo. Something you have to do when taking chemo.
I just spent some time with my parents and he seems pretty good all things considered. Still likes to drink the wine!
Maybe your mother has different affects on steroids because she is female? Not sure but maybe... He is taking a pill and I am not sure what dosage. So that could be the difference as well.
One thing I would do, is ask the doctor... don't be afraid to ask questions and about alternative drugs or medicine?
It does sound to me that her steroids are a much higher dosage if given through IV - my dad never had that.
stay in touch and just enjoy each moment you have with her. I try to spend more time with my parents and enjoy each moment...
Bc |
|
| Back to top |
|
|
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
| Posted: Sat Sep 23, 2006 3:46 pm Post subject: Re: GBM _ |
|
|
Dear bc,
It was great to hear your news so fast!
Well, they tried oral steroids for my mum, too, but it was "not enough" for her, she constantly had headaches meaning that swelling did not go better with the oral pills. So, they put her on an antidiuretic perfusion i.v. and they just added 3X daily her steroid injection directly at the end of the perfusion.
Now she's having her injections intramuscularly by the hospice nurse.
It's great for you that you can spend as much time with her dad as you can. Bc, I'm living in Geneva, and my mummy is in Hungary... this is so hard, this is incredibly hard...I'm flying to Hungary either each or every second week-end. But, I'm having a family, husband and two kids, and a full-time job to manage here in Geneva. At least, my brother, sister, and aunt are there with her all the time.
I'm suffering a lot because of the distance. I'm going to see her again next week-end, I can't wait. You can imagine how hard it is when I have to take my flight to come back here. Every time when I'm leaving Mum's place is a moment when my heart is weaping and falls into thousands of pieces.
Best wishes,
kris |
|
| Back to top |
|
|
|
vintage
Regular
Joined: 12 Jun 2006
Posts: 35
Location: Minnesota
|
| Posted: Fri Oct 27, 2006 4:05 pm Post subject: How are you? |
|
|
Hi Kris~ Haven't heard from you in a while. Wonder how things are. I know your last post on the other thread was grim.
I have been praying for you and your family.
Kevan |
|
| Back to top |
|
|
|
bc
Experienced user
Joined: 11 May 2006
Posts: 54
|
| Posted: Fri Oct 27, 2006 4:20 pm Post subject: Re: GBM _ |
|
|
Kris,
Hello, I am also hoping that you are doing ok. We are just starting to go through the hardest part with my dad and I have been thinking of you, as I know you have been dealing with this during the past month.
Just this past month his MRI showed tumor growth and he is having some weakness on his right side. He is showing the signs that they say occur when you have about 3-6 weeks left. I guess it's really hard to actually put a timeline on this, as everyone is different.
He can walk, slowly but still getting around. He sleeps around 12 hrs a day , is still eating. But this change occurred very quickly.
Anyway, I hope you are able to spend your time with you mom and that she is not suffering. My Dad thankfully is not suffering at all. Something to be grateful about.
Bc |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3388
Location: Tennessee
|
| Posted: Sun Oct 29, 2006 5:03 am Post subject: Re: GBM _ |
|
|
[quote="bc"]Kris,
Hello, I am also hoping that you are doing ok. We are just starting to go through the hardest part with my dad and I have been thinking of you, as I know you have been dealing with this during the past month.
Just this past month his MRI showed tumor growth and he is having some weakness on his right side. He is showing the signs that they say occur when you have about 3-6 weeks left. I guess it's really hard to actually put a timeline on this, as everyone is different.
He can walk, slowly but still getting around. He sleeps around 12 hrs a day , is still eating. But this change occurred very quickly.
Anyway, I hope you are able to spend your time with you mom and that she is not suffering. My Dad thankfully is not suffering at all. Something to be grateful about.
Bc[/quote]
Bc, I am so sorry to hear this news about your father. It is so strange how GBM can be so deadly and yet often is so painless. That is how it was with my mother too. God be with and your father.
_________________
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/ |
|
| Back to top |
|
|
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
| Posted: Sun Oct 29, 2006 8:50 am Post subject: Re: GBM _ |
|
|
Dear bc and Kevan,
Thanks to both for your words.
Unfortunately -or fortunately if we take the the pain and suffering into account - we are very close to the end of the battle. Mum's in Hospital and on morphine since 4 October. She had more and more strong headaches and therefore they augmented her morphine, now she receives it 6 times (!) a day.
She' is completely immobile in the hospital bed, somnolent and very confused if awaken. She's practically not eating, and drinks only a few drops of water. Every movement, every touch is painful for her.
I have to manage visiting her from this huge distance as often as I can but also taking care of my family, kids, and also of my full-time work; I just spent another 3 days with her, holding her trembling hand and calming her when woke up from fears and visions. My heart is broken and even though I'd like to tie her to me forever, I'd like this to be finished.
Bc, I'm saddened to hear your dad worsened. In my Mum's case, too, the change was very sudden from a quite well manageable life into a worsened condition where she could not walk anymore from one day to the other, and became uncapable of writing or reading (loss of concentration), and also lost her short-time memory with more and more periods of confusion.
However, I do not think your dad's symptoms would mean he has only 3-6 wks left, though you're right saying that everyone is different. They started morphine for Mum (with the smallest dose, 3x a day) more than 3 weeks ago, and now she's on higher dose receiving it 6 times a day, in every 4th hour to avoid her having pain, and also to keep her more and more in a sleeping state. Even though under morphine, I think she's still having a sort of constant generalised pain.
Timeline for being on morphine is again based on the individual's resistance (strength of his/her heart and circulation), nobody thought that Mum could stay on it for more than 3 weeks now...
Yes, it's a blessing that your dad is not suffering, the most important is and will always be later on to keep him painless. What drugs is he receiving now: dexa' against oedema? fentanyl against pain?
All my heart is with you!
Kevan, thank you for praying for us. How are things going with you?
Kris |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3388
Location: Tennessee
|
| Posted: Mon Oct 30, 2006 12:02 am Post subject: Re: GBM _ |
|
|
[quote=”Kris”]I have to manage visiting her from this huge distance as often as I can but also taking care of my family, kids, and also of my full-time work; I just spent another 3 days with her, holding her trembling hand and calming her when woke up from fears and visions. My heart is broken and even though I'd like to tie her to me forever, I'd like this to be finished.[/quote]
Hi Kris. I am so sorry your mother is not doing well. I so much wish for you to be able to be with her as much as you possibly can. I can hear how broken your heart really is . Do remember that you are not alone… I am with you in thoughts and prayers.
_________________
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/ |
|
| Back to top |
|
|
|
bc
Experienced user
Joined: 11 May 2006
Posts: 54
|
| Posted: Mon Oct 30, 2006 5:11 pm Post subject: Re: GBM _ |
|
|
Hello,
The only drugs he is taking is the steroids and the dilantin - anti-seizure.
He sleeps about 13-15 hrs a day.. and can still get around with help, since his right side is weak.
You really don't know how long anyone goes.. so we just enjoy the time and I really am happy that he is very content and has no pain!
Kris - I am so sorry for your mom, just hope she can rest comfortable and be at peace, as I think seeing her suffering is the hardest thing to deal with. I will be thinking of you, now go spend more time with your mom! Work can wait...
BC |
|
| Back to top |
|
|
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
| Posted: Tue Oct 31, 2006 3:42 pm Post subject: Re: GBM _ |
|
|
Dear bc,
Great to hear that your dad is content and feels not too bad. Yes, do enjoy every moment and tell him a hundred times how much you love him.
You're right when saying work can wait, I can't tell you in words how much I'd love to stay with my Mum constantly until she passes away, but it is very difficult to overcome those 1800 kms between us - I fly there as often as it's physically-practically possible...but, it is not enough mentally, my soul and heart are weeping for more. I can't manage to leave the two kids over here for a longer period.
Due to the distance, I'm in a constant fear and stress that I won't be there or I can't arrive there in time when she's about to pass away. It's great for you to be with your dad all the time, anytime.
Keep up and take care,
Kris |
|
| Back to top |
|
|
|
bc
Experienced user
Joined: 11 May 2006
Posts: 54
|
| Posted: Tue Oct 31, 2006 3:57 pm Post subject: Re: GBM _ |
|
|
hello,
I do feel for you, that is so hard to juggle. But for the time that you had with you mom, she knows and heard everything you have told her, so you have done all that you can do and she knows you are there for her, whether physically there or not...
what is weird with my dad, is that friday, we took him out for errands, sat and sun were together, had dinner, watched the football games. Although he had a few naps in between all of this...
but monday, started to be more sleepy than he was the previous week and today is sleeping 20+ hours. In the site that talks about the end and what to expect... I sort of think 1 week at the very latest and possible later this week or weekend.
Even in death, life does go on and although you would like to stop everything to take care of this, you can't, with a family, kids , job, etc.
so you do the best you can and help out when ever possible.
Stay well.
BC |
|
| Back to top |
|
|
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
| Posted: Thu Nov 23, 2006 7:38 am Post subject: Mum's battle is over |
|
|
Dear BC, Brainman, Joy, Michele, Jen, Kevan, Sam and all
My beloved Mum's battle has ended and she passed away this morning.
My brother was with her in the Hospital room, but he fell asleep in the second bed at around 2:00 am, Mum was sleeping. Then he woke up suddenly to a noise, and noticed that Mum was not breathing. It was 5:40 a.m.
She had 4 months since diagnosis. The last 3-4 weeks were filled with so much suffering and agonising pain that it is a relief to know her being in peace now. It's a relief for her, a relief for us, but I'm already terribly missing her. Terribly.
If we can believe in heavenly peace, then I also believe that they all meet up there, my mum and your lost ones, and they talk about much more beautiful things then their GBMs.
It was wonderul to have your support all along this painful journey. Thanks to all of you, you're in my prayers.
Kris |
|
| Back to top |
|
|
|
vintage
Regular
Joined: 12 Jun 2006
Posts: 35
Location: Minnesota
|
| Posted: Fri Nov 24, 2006 2:14 pm Post subject: Re: GBM _ |
|
|
Hello Kris~ I am so sorry for your loss....I have thought of you often these past days. Thankfully her suffering is over.
Hugs to you!!
Kevan |
|
| Back to top |
|
|
|
Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
|
| Posted: Sun Nov 26, 2006 2:10 pm Post subject: Re: GBM _ |
|
|
Dear Kevan - and all my Friends here
I'm so grateful for your comforting words - I've gained so much strength and reassurance through the sympathy and friendship of all of you.
Since Mum passed away last Thusday, on Friday I stayed at home and have been crying a lot; on Saturday we've been talking all day long about Mum with my kids and my husband more or less without crying, and today (Sunday) I'm feeling more calm and sure then ever knowing that she's in eternal peace.
I'm sure I'll still be cyring many many times, but cyring is a sort of help to de-stress. I decided to talk a lot about Mum with the kids, and we'll go on our lives knowing that she's watching us from somewhere above, and therefore we will smile at her constantly and we'll live our lives a nice way so that she could also smile at us.
Please, keep in touch, bc, Joy, Sam, Kevan, Michele, Jen - would be nice to meet one day!
God bless you all, all on this forum.
I hope Jim (Brainman) is doing OK.
Kris |
|
| Back to top |
|
|
|
michelesmith
Experienced user
Joined: 28 Oct 2005
Posts: 72
|
| Posted: Mon Nov 27, 2006 12:18 am Post subject: Thinking of you |
|
|
Kris,
Just wanted you to know I was thinking about you and will be praying for you and your family. We have just hit the one year mark since dad passed away. I still have days that I cry. My 4 year old son, oddly enough, has been hit the hardest by dad's passing of all the grandchildren (he is the youngest) and is still having a hard time and talks about him constantly. Everyone said, he would forget the easiest, but he is a very different little boy with a huge heart and a memory like you wouldn't believe. Dad had on a t-shirt with a hole in it one day in those last couple of weeks. My son remembers that shirt and has decided that I must cut a hole in each of his undershirts. It is one of those things that makes you laugh and cry at the same time. I say all of this to say, some days will be harder than others. We will still be here for you if you need to unload or just need a little sympathy. And if a hole in an undershirt can make the day a little easier--let them have their hole. We all need those small things that we need to make this time bearable.
God Bless you and your family,
Michele
_________________
Michele |
|
| Back to top |
|
|
|
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
