How long and what to expect?

brunette · Posted: Wed Dec 27, 2006 4:34 pm Post subject: How long and what to expect?

Hi all,

I knew that once my mum was diagnosed with GBM (3 of them) that she probably wouldnt have a huge amount of time with us. The original tumour was inoperable and she has had just under 6 weeks of radiotherapy.

Unfortunately she was taken into hospital on Boxing Day due to high blood sugar levels, but since then she has had oxygen and been on a drip.
The general consensus is that it would be pointless to give anymore radiotherapy. She cannot sit up, doesnt want to eat and is becoming agressive. She isnt really aware of her surroundings much now either.

I am of the opinion now that her time with us is going to be short, as ever though I want to cling to some hope. Does anyone out there have a similar story and can tell me what to expect, and giving the information I have told you, have an idea of how quickly she may go?

My brothers and sister are asking me lots of questions which I am doing my best to answer but I dont know what to say. I think she may have a couple of months left, who knows. She has gone downhill so fast. I would appreciate your thoughts and thank you in advance for your replies.

Love to you all, Jenny.

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

I recently loss my dad to GBM - this site really helped to know how much time he had left.

http://www.brainhospice.com/
I hope this helps.

BC

brainman · Posted: Wed Dec 27, 2006 9:49 pm Post subject: Re: How long and what to expect?

Hi brunette,

Here is a link to another post that may help you.

[url]http://cancerforums.net/viewtopic.php?t=3380[/url]

Nobody can tell you how long your mother might live. Unfortunately, most people do not live long. However, never forget that she is alive NOW. So live in the NOW and be ready for the THEN. Help your mother find joy in however long she has. Also, take care of yourself. I know I will be thinking and praying for you and your family. Keep us informed.
_________________
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: Thu Dec 28, 2006 3:01 am Post subject: Re: How long and what to expect?

Thankyou both for your replies. xxx

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Brunette,
I'm sorry to hear about your mom. I know the timing doesn't make it any easier. You are in my thoughts. The brainhospice.com site really is one of the best to tell you the stages. I didn't find it until after my dad passed but if I had we would have done things differently. Take each moment you have. Treasure it. And tell her the things you really want her to know.
_________________
Michele

Kris · Posted: Mon Jan 01, 2007 4:11 pm Post subject: Re: How long and what to expect?

Dear Jenny Brunette,

How are you and your Mom doing?
I have been thinking of you throughout the holidays and I'm sure it was a very hard period for you to endure. Let us know how things go. You're not alone.

As bc and brainman and Michele, I also lost a parent (my beautiful Mom) to GBM and I absolutely agree with them that you should really talk to her as much as you can, and tell her NOW all what you feel important. Cherish her and embrace her with all forms of loving...words, chat, stories, hugs, smiles, or, just with silently listening to her, watching her. My Mom was in a deepening coma the last few days but I did not stop talking to her and whispering into her ears letting her know how much I was proud of her and how much I loved her.

Thinking of you and wishing you - and all the friends here on the forum - a New Year bringing lots of good hope!

Kris

brunette · Posted: Tue Jan 02, 2007 4:08 am Post subject: Re: How long and what to expect?

Hello Kris, thankyou for your kind words.

Mum had a reasonable time over christmas. I took my children to see her and she was awake and very lucid. Her short term memory has gone altogether though.

She has had a couple of days where she has been pretty "out of it" and she was getting agressive with the nurses. I think that was down to her blood sugar level though.

The next step is to get her out of hospital and into a hospice , but thats only short term. The best one where she lives can only take her for a week, but that will at least give my step-dad a break. Ideally I would like her to be cared for at home, social services and the MacMillan nurses are sorting that out as we speak.

It has been an emotional rollercoaster so far, and I know it will only get worse. Things are tough as I am 2 hours drive away and I feel helpless. But I am coping well so far. So, I plod on, into a New Year, chin up and trying to keep smiling.

Know that you are all in my thoughts and I wish you all the best for the coming year. Love and hugs, Jen xx

Kris · Posted: Tue Jan 02, 2007 10:40 am Post subject: Re: How long and what to expect?

Dear Jen,

I'm glad to hear you've had a reasonable Christmas period and that your Mom was not going too bad! Hope and wish it would last long in this New Year!

Well, hospice would really be a good thing, we also went through all the possible options with my Mom: just after diagnosis we moved her into her sister's (who is my Aunt) house, where my aount cared for her for about 2 months. These two months of August-September where in good quality for Mom. Then her headaches started to get harder and oral steroids plus fentanyl patches were not enough anymore to keep her painless. Then we took her back to her own home and had two hospice nurses -1 for the night and 1 for the day - to care for her and they started to give her intramuscular steroids 3 times a day, plus the highest dose of the Durogesic patch. That time she was already uncapable to walk or to sit up alone, and also became urinary incontinent. Her headache appeared again so she could only stay at home with hospice for 2 weeks. Then she was transported back to the Neurology clinic where they started to put her on intramuscular morphine.

We wanted her so much to stay at home as long as possible, but we understood that managing her pain was only effectively possible at the hospital where she had marvellous nurses and doctors around her. She and us we were all happy that she had at least 2 sunny months at her sister's house then some time in her home, too, in good quality, with palliative care.

I read you were at 2 hours drive from your Mom, which is hard I know; imagine, I was 1700 kms away from her as I'm living in Switzerland and Mum lived in Hungary...I took the plane every or every second week-end, and from the airport in Hungary I still had 2 hours drive to get to her town. During these week-ends, my husband stayed home with our two kids which was a very important support for me.

Try to make those 2 hours driving as many times as you can, and take your kids with you until your Mom is in a relatively good period. I know you'll manage well.

All my best to you,
Kris

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Jen--I second the idea of bringing in hospice as soon as they will let you. I don't know how it works from place to place. We didn't really understand hospice when dad was first diagnosed and thought that it was only for the "very end". We didn't know all of the things they could do for us. I would have brought them in much sooner had I known what they really could do. Here they would not "sit" with your loved one, but they would come and do blood draws, administer medications, bring the medications to your home, bring out hospital beds, walkers, wheel chairs, bath chairs, anything like that that you might need. They also brought absorbant undergarments when dad became incontinent. They would come out and bathe him, change his clothes, offer my mom support, explain to her what was happening and preparing her for what was to come. All things that were really hard for my mom who is only 5 foot tall (150 cm) and of a slight frame and also had just broken her elbow and had it replaced with a plastic one a couple of months before my dad was diagnosed. Also, mom spent hours getting dad ready and going to doctors' offices for blood draws and check ups and he spent hours sitting in these offices. This could have been done (and was once we got hospice involved) right at home and was much less disruptive for him. Lastly, they were there when dad passed and they called the appropriate people and really helped to make things as easy as possible at that time. I am forever indebt to the wonderful hospice people that we had. They continued to check on my mom for months after dad passed and even called during the holidays to see how she was doing.

I am about 12 hours from my dad here in the United States so I can also relate to the long distance and trying to get home every chance you can. I also urge you to do this. I know you will get discouraged and tired and busy with everything else in life but afterwards you will treasure those times.

Michele
_________________
Michele

brunette · Posted: Thu Jan 04, 2007 12:33 pm Post subject: Re: How long and what to expect?

Hey everyone, this is prob not the best time to be posting as I have a little too much too drink.

But who cares... Im posting because I am madder than hell. My ex husband of 2 yrs said that he wanted to visit my mum in hospital as she had been a big part of his life for 15 yrs and he wanted to say goodbye. Against my wishes that he go and apart from the fact that she wouldnt remember, he went anyway.

We only spend a short while with her as a family as it wears her out so badly, but despite my spepdads instructions, he stayed 2 hrs and totally wore her out. I know he only went to annoy me, didnt have my mums best interests at heart and I am so extremely cross right now. Is this normal, am I so angry because mum is ill, am I justified in being mad at him. Right now I just dont know anything anymore.

And hey, not bad typing for someone who is a weeny bit drunk eh!! I appologise for this post, when I read it in the morning when Im sober, no doubt I will regret it. Does anyone else ever feel like ranting at the world?

Well, I send my love and best wishes to you all, as ever. I shall expect some interesting replys lol. Bye all xxxxx brunette ( Jen)

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Brunette,
I think we all have bouts of anger, sadness, confusion, etc. with what goes on with this disease. I don't know your ex so I won't comment on his motives. But try to remember some times people do have regrets and may have things that they need to take care of knowing that the time is short. This disease is a challenge to everyone involved. Please know that if you need to rant--this is a good place to come. There were times when I didn't feel I could burden my family with my sadness, but I always knew I could come here, where we are all leaning and learning from one another. Some days are better than others--both for the one with the disease and the family. I think part of your anguish and sadness is because you feel that he has taken time you could have spent with your mom. Try not to get discouraged, and try to continue being a strength for your mom and giving her what she needs. The road is long, it is tiring, it is frustrating and sometimes we even feel like it is unbearable. When it is over, every moment, every hand held, every word, will be precious to you and you will grasp to hold on to each one. I will be thinking of you especially today and know that I send strength and patience to you Very Happy

_________________
Michele

brunette · Posted: Fri Jan 05, 2007 3:07 am Post subject: Re: How long and what to expect?

Thanks Michele,

on top of everything, after I posted I found out that my grandmother died yesterday!

Yetserday was NOT a good day. Chat soon, love to you all xxx

brainman · Posted: Fri Jan 05, 2007 1:05 pm Post subject: Re: How long and what to expect?

Jenny, I am so sorry for your loss. You are facing so much. Please, be sure that I will be praying for and thinking about you and your mother.
_________________
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: Fri Jan 05, 2007 1:06 pm Post subject: Re: How long and what to expect?

Thankyou, much appreciated. xx

brunette · Posted: Sat Jan 06, 2007 5:33 am Post subject: Re: How long and what to expect?

Hi everyone,

I would like some advise if anyone can give it. Mum is now suffering from bouts of confusion and tearfulness and she has also been catheterised. She is eating very little and will be moved hopefully into a hospice next week.

I know that the few weeks after radiotherapy has finished are the worst as far as fatigue is concerned but is this normal behaviour or (I am thinking) that the tumour is causing these symptoms?

Some of my family are thinking in a couple of weeks that mum may show signs of improvement, and as much as I would dearly love this to be the case, I am highly doubtful. Does anyone else have a similar tale to tell? I would really appreciate your thoughts on this and thank you in advance for any replys.

Love to you all xxx Jen.

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