The final weeks

So sorry for your loss, there is nothing more important than being  by their side when they pass. They know you are there to. Sending my love and prayers

I’m so very sorry to read this! You always hope for a miracle. I’m glad you could be there, I’m sure your daughter appreciate it too. 

My husband peacefully passed away after a week in the care home. We were with him everyday and especially there for him right at the end. He died on the 1st and our son was born early on the 3rd. I truly believe they both knew that I couldn't cope with both situations together. And Luca, knew I needed him early. 

I am so sorry for your loss Lleivers. You must be such a strong person. I hope the birth went well and that both you and Lucas are recovering and getting to know each other. I can’t even imagine going through what you have. Much love and strength. 

I’m so sorry to read this Lorraine. 

I emailed you a while back, did you get it? Hopefully it didn’t go to spam! 

I’m sorry your loved ones didn’t get to meet and I hope the birth and everything went well, such a bittersweet moment for you. Every big moment with my daughter now I’m finding is bittersweet, it’s hard to live without your soulmate. Even harder with a newborn I imagine. 

Tara

Hi Lorraine,

I would like to hear your experiences coping with a newborn and caring for your husband.

I am engaged to my fiancé who is one year into his GBM diagnosis. Six years ago, he was diagnosed with oligo/anaplastic astrocytoma 2. He had 3 brain surgeries, radiation, on temozolomide now and the residual tumour at the surgical site has shrunk. There is still residual tumour.

He kept saying he would love to have a baby. But he wouldn't do it if he will keep getting worse. I agreed to be pregnant by ivf but he kept changing his mind. And I totally understand. 

Hope to have your advice. I am mentally prepared to raise our baby alone if he succumbs, but is it the right thing to do?

Dear sunnytan 

I would love to help you and give you advice. Please private message me.

I have had the most amazing time with my new son over the last 4 weeks. He has given me hope, joy, love, and a reason to get up out of bed everyday. Unfortunately I can't give you advice on coping with caring for your partner while also looking after a new born as my husband died 2 days before Luca was born. Though I can share my experiences. I was also aware and prepared for the possibility of raising our son alone. 

Lorraine 

Aug. 2015 My 73 yr. old mother began having blurry vision and flashes of orange, blue and green light in her eyes.  

Sept. 2015 Eye doctor didn't find anything in her eye exam.

Nov. 2015 Visit to Ophthalmologist who told her it was not her eyes "Go get an MRI". 

Dec. 17th, 2015  MRI found a 1 to 1 1/12 inch tumor behind her right ear in the vision area of the brain.

Dec. 22nd The tumor was surgically removed. She was diagnosed with GBM stage 4.

Jan 2016 Began 6 weeks of Radiations and Chemo. Chemo was temozolomide that lasted until Oct. 2016.

    Mom did well with the radiation, some hair loss but all regrew once treatments stopped. Chemo made her tired but didn't cause any real issues for about 6 months. Chemo eventually caused problems with platelet levels and was stopped in Oct. instead of the planned Dec. Mom was still able to drive and continue all her regular activities.

Dec. 2016 MRI showed regrowth. 

      Mom chose not to tell us and "ruin the holidays ".

Dec 26, 2016 She had a seizure and was found nonresponsive at home. ER docs spilled the beans about the regrowth.

Jan 3, 2017 Tumor was surgically removed. 

      This surgery caused vision loss that made her unable to drive. She was still able to care for herself take care of her daily needs. She was more unstable on her feet. No longer able to tend flowers or quilt.

Feb. 2017 She started treatment with Avastin. 

       It is a form of Chemo but, had no noticeable side effects. It blocks cancer from creating a blood supply and slows cancer regrowth. 

July 7, 2017 MRI showed rapid regrowth, the tumor had spread to the left side of the brain and is inoperable. Doctors said the Avastin had stopped working and stopped the treatments.

    July 2017- Sept. She showed very little change outside of some memory issues and loss of words when speaking.

Sept. 2017Suddenly Mom couldn't read the labels on foods. No longer interested in TV or music. Hospice doing biweekly visits.

Oct. 2017Can no longer understand how to use the oven or fix her own food.

Nov. 2017 Mostly just stays in her chair. No interest in anything.

Nov 10, 2017 - Mom was found nonresponsive in her chair. She had 2 seizures. Hospital bed delivered.  The first 3 days after the seizure her words were all confused. I'm told this is called "Word Salad".  She pronounces a group of random letters as if it is a word.  Hopice visiting 3 times a week. She now requires 24 hr care. She can no longer feed herself. She is able eat, drink and taking meds.  She has no pain and has periods of lucidity where she knows exactly what she's saying and what's being said. At other times she talks to invisible people in the ceiling or in the corner.   

The lack of knowing what is going to happen next is the hardest part of this horrible disease.  I'm thankful that there isn't any pain. I'm thankful that my mother has lasted as long as she has.  Many people are diagnosed and only last a few months. We've had nearly 2 years. 

For anyone in the early stages please remember things seem to change in an instant!  Don't wait to do anything.

It is saddened reading all the stories that everyone shared here. Being totally clueless about GBM, I find every case is different. Nevertheless, I find this forum is amazingly helpful when I was lost and depressed. My healthy mother was diagnosed with Glioblastoma Grade 4 in Feb 2019 at the age of 57. She recently passed away recently in March 2020 after she finally met her grandson.

My mom’s tumor was located on the left lobe of the brain. It was initially found at 5cm. Neurologist recommended no surgery because the tumor was growing inside the brain and no guarantee that he can remove all tumor cells. Furthermore, she will lose her speech and become paralyzed. Our goal was to prevent any type of pain and be comfortable. Since tumor was on left lobe, her right side was paralyzed and she had trouble with speech and comprehension.

Our family decided to start with radiation. Tumor was inflamed after radiation treatment. She became unresponsive so we rushed her to hospital where she started with chemo. Then her condition slowly improved. MRI showed that tumor shrink to 4cm in October. Unfortunately, she clearly became unresponsive again in December. Doctor gave her weeks left. We were scared and did not know what to expect. We did not rush into hospice because my mother was not in pain, not even a minor headache; therefore, we managed to care for her at home.

Towards her end stage, the tumor was approximately 11cm. Fortunately, my mom was not in pain and her appetite was still very good. She slept a lot. Besides getting up to use restroom and eating, she spent most of the day in bed. Could barely open her eyes either due to the pressure of tumor. Couple of days before she passed, she was bedbound because the lost of bladder control.

On her last day, she got up for breakfast then went back to bed and never wake up. Her breathing was unusual and gradually became louder. She went into deep coma and passed away the following day peacefully. It’ve been almost 2 months since she passed and I still don’t have the courage to look at her pictures. I’ve spent lot of time thinking about the past year hanging out with her. Wish I could have more time with her.

I hope you stay strong. This terminal illness is scary and depressing but you need to stay strong for your loved ones.

Hi Yenphi7, I’m sorry for your loss, you can cherish the time that you spent with her and that she passed peacefully at home with the people she loved.

My Dad passed away from GBM in November and he too was at home. I found this site a comfort, I was not alone. It was by far the toughest thing we have been through and I think about him all the time. I don’t know about you but since we have been in lockdown I think about him more and more.

I know you would have liked to have had more time with her and it’s so very tough. It’s early days for you right now and still very raw I’m sure. 

We will always miss them but in time it does get a little easier, I can now walk past a photo of my Dad and smile at him, well most of the time anyway. Stay strong and take it slowly. 

Best wishes xxxxxx