GBM4... my mum. Where do I find the strength?

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Mum was diagnosed with a GBM4 five weeks ago. From practically no symptoms apart from some uncoordination on her left side, she now can hardly walk, she is very forgetful, she has severe thrush in her mouth/GI tract making it difficult for her to eat and drink or talk.... The tumour is inoperable. She declined the 6wks of radio/chemo and opted for two weeks radio only. She had deteriorated badly before that started, and she is half way through.

I feel like I am losing the plot. I cannot think of anything else and I am watching my mum die in front of my eyes. I am a midwife and have phoned in sick too many times to count because I just breakdown in tears all the time. I have two children who adore their grandma, and I try hard to be strong when they are around me, but each day I see my mum, I wish it were me in her place.

Six weeks ago she was a vivacious 73 year old. Now she looks like a 93 year old. I am torn into a million pieces.

I lost my dad four years ago (love of mum's life), and the only consolation I have is that he's waiting for her.

How do I go on?

brainman

Hi Anguss, I am very sorry about your mother's GBMIV. My mother died of a GBMIV 10 years ago. My father and I were her primary care providers. She died 2 months after being diagnosed. She too was 73. It was definitely not an easy thing to go through and I am not sure where I found the strength. I was fortunate to be in a very flexible job that allowed me to take off as much time as I needed so that was not an issue. And the fact that I had a history of my own glioma meant that I was not totally in the dark. In fact, my mother had an MRI at the local hospital and was referred to a major medical center. I arrived the day before she was to go. She had her MRI films with her to take. I took one look at them and my heart sank; I knew what I was looking at. It was so big that it was causing a midline shift (left side distorting the line between the two halves of the brain). I also knew that in all likelihood my mother would not suffer much pain. In my case, knowledge helped me.

During the next 2 months, I did all that I could to bring quality into my mother's life. I wrote letters and emailed all of her friends letting them know what was happening with her. I read their replies to my mother. Just little things like that brought joy to her last months.

I have no idea how long your mother has left. I can only encourage you to help her make the most out of whatever time she has left.

You and your mother are in my 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/

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

One minute I'm okay, the next I'm balling my eyes out. Your words of identification mean so much Brainman, all I can do is thank you from the bottom of my heart.

ksplat

Dear Anguss
I'm hearing & feeling your pain & anguish for your beloved Mother. I am so very sorry she has been dealt such an awful illness. I am very, very sorry you are on this roller coaster called Cancer.
Spend as much time with her as you can (although I fully understand you have a family, work, etc). These responsibilites cannot be ignored, & of course you have to take care of yourself. Are you able to access some counselling for yourself at present? This would be very beneficial.
I live just over an hours drive from my Bro & spent many a weekend driving to visit him & my family during his 19mth battle with a GBMIV. I always felt it wasn't enough, I couldn't get enough of him, knowing what he was going through. He wasn't alone of course, he has a wife & kids & my Mum & Sister also live in the same place, & loads of friends dropping by to visit or phoning to check on him. I really felt miles away though & will always cherish the time spent with him, especially in his last weeks whilst he was in hospital.
My Bro had hardly a symptom when diagnosed. Just some L side heaviness in his arm & leg. He also underwent radiotherapy which really effected him badly. He was barely able to walk & was suffering terrible seizures after 4.5 wks of radiotherapy. It was ceased & he underwent a 2nd debulking. Although he was initially advised the tumour was "inoperable" his surgeon was prepared to debulk the tumour when needed. Mark had 4 debulking surgeries altogether. His last surgery in Feb this year saw the surgeon place gliadel (chemo) wafers in the tumour bed. He had a couple of months with no tumour growth!
I know Marks' battle was tempered with lots of lows, it is hard to quantify the effects of these as he was such a funny, funny man. Through his illness he kept up with the wisecracks & one liners - I'm sure to keep all of his loved ones & friends "upbeat". He hated any tears or sadness. I remember in the early days he said "don't bring me flowers, I'm not dead yet!"
As Brainman has said it is important to keep the JOY in your relationship with your Mother. Although the memories will be "jaded" by sadness, the fun & joyous memories will give you strength through this ordeal.
I will keep you & your Mother in my prayers.
Thinking of you & God Bless.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Angie thank you for your kind words and practical advice, it really helps me. I have followed your story and I am so sorry for your loss of Mark - what a brave man and a brave family. I appreciate the time you have spent supporting me it means a lot xx
_________________
"Walk Tall Jill"

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

My mum's thrush has now cleared, she can eat and drink and talk, but she is still catheterised and bed bound. She hasn't been out of bed in 3 weeks.

She started to improve last week but now she is sleeping the majority of the day again and her left eye has closed. The doctor's can't find any sign of infection in it. I am convinced this is a sign that the tumour has grown again following the radiotherapy and is pressing on a nerve. When her eyelid is lifted her eye wanders, and she doesn't even realise it is closed.

Has anybody else seen this symptom in loved ones?
_________________
"Walk Tall Jill"

brainman

Anguss, it is more discouraging to hear that your mother is sleeping all the time and that when she is awake on eye stays closed and she does not notice it Sad

.

The brain is is an amazing organ and cancers of the brain can cause so may different reactions. I am guessing that it is her left eye that does not open. Am I right? I just remember that you said she was having left sided weakness before.

My mother had a very strange vision problem as her first symptom. With both eyes open, she was totally unaware of anything to her left. However, if she covered her right eye, she could see perfectly out of her left eye. She would bump into things with her left side just because she was so unaware that anything was there.

I say that it is a greater concern to me that your mother is sleeping most of the time because that is how it was for my mother during her last couple of week. She would awaken for short period but then go back to sleep. Stay close. If her breathing changes, the end is very near.

You and your mother are in my 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/

pauline47 · New User Joined: 02 Jul 2008 Posts: 3

hi to all my husband passed away at the age of 66. I nursed him home for the last 5 months, feeding him trough a gastric tube in his stomach. he drifted in and out of a coma and finaly lost his battle after 5 and a half years of first gmb grade 2. He had 2 surgeries and radio therapy and chemo temodol. i still have 2 months of chemodol in my house that i wished to send to sombody who needs it.

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Mum's slipped into a coma now. She is completely unresponsive.

Ten weeks ago she was a vivacious energetic woman. This is probably the most aggressive disease I have ever encountered, I pray for a quick end for my ma Sad

I'm in a complete daze I just can't believe it. I don't think I have any tears left?
_________________
"Walk Tall Jill"

brainman

I have tears enough for both of us Crying or Very sad

. {{{Anguss}}}
_________________
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/

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Today I have received a gift from God which I wanted to share with you.

After being in a coma for 48 hours, my mum woke up today. She couldn't talk, although she was trying to desperately and I could make out a couple of the words she mouthed. She knew we were all in the room with her and she stayed awake a couple of hours chatting around her. She knew exactly what was going on and I was able to put my phone to her ear so that she could hear my sister's voice.

The reason I see this as a gift is not because I view it as the road to my mum's recovery. I don't. My mum is so desperately ill and she is showing many signs of end stage disease now. However, two days ago I thought I'd lost my opportunity to talk to her. You know how when you lose somebody, you think "oh I wish I'd said this, I wish I'd said that" (no matter how much you try to cram in when you know your loved one is dying....) well today when my ma woke up I got the opportunity to do that. To tell her that things she'd asked me to sort out had been done, to reassure her that we were all safe and that her fifth grandchild is on the way, to remind her how much we loved her and to ask her to give my dad a big kiss from me when she sees him! Most important, it gave my daughter the opportunity to give her grandma a kiss and to say a proper goodbye, knowing that grandma knew she was there.

The devastatation when she passes is going to be so huge. But today the gift I have been given I will be forever grateful for.
_________________
"Walk Tall Jill"

brainman · Last edited by brainman on Thu Nov 13, 2008 2:09 pm; edited 1 time in total

Oh, that is so beautiful, Anguss Smile

. I am very happy for you. I know exactly what you mean. Those are very special memories.
_________________
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/

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Hello Brainman and everyone... haven't been on here for a few days and I feel like I owe an update after the support I've received here.

Last Friday, my mum passed peacefully in her hospital bed after saying goodbye to all of her children, grandchildren, remaining relatives and closest friends.

I checked my diary. It was 10 weeks from diagnosis to death. I have a photograph of her on my shelf the day after diagnosis, where she is sat on a hospital bench laughing with a friend.... she glowed with vitality then, such a short time ago.

A couple of weeks before mum died, she said to me "I'm so grateful to have had the time to read all about my family history and to sort things out.... how many people get chance to do that?". She truly did put her life in order for her own piece of mind and more likely I expect, which was so like her, to take any burden away from her family on her passing. A more altruistic and loving mother it would be hard to find.

I grieved mum everyday of her illness and I will miss her everyday of my life, but I can't be sad that she is now free of suffering and is reunited with my dad - the love of her life - who she missed terribly from the day he died four years ago.

I have quoted things I have learned on this site often, all of which worked out accurately, and I feel that the information I gained helped to support me through mum's illness and to understand what may happen next. I hope you don't mind if I come back here and offer support when I can? I have had a short relationship with this forum, but I feel attached to it and I don't want to leave. It has been a bit of a sanctuary to me.
_________________
"Walk Tall Jill"

brainman · Last edited by brainman on Thu Nov 13, 2008 9:53 pm; edited 1 time in total

Oh, Jill, I am so sorry to hear that your mother has died. Sad

It breaks my heart. My mother also died just shortly after her diagnosis. I am glad that she was able to say goodbye to those who loved her and who she loved the most.

You and your family are in my thoughts, prayers, and heart.
_________________
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/

amy79a · New User Joined: 31 Jul 2008 Posts: 9

Anguss, I am sorry to hear that your mother has passed but I am glad to see you are taking it in stride and remembering that now she no longer has to fight this beast and can find solace in her love. It sounds like she had several beautiful moments in the last weeks and I know you will keep this in your heart. Take care and you are all in my prayers. *Huggles*

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