I Don't Know what else I can do

My wife, who is 28 years old was diagnosed with a Primary Glioblastoma progressive Brain Tumor affecting the temporal lobe yesterday.  She went through surgery and recognized me when she woke up but she spent most of the day like she was in and out of consciousness.  They tell me that the pathology report will not be available for anywhere from 3-10 days, but the surgeon seemed confident they got the majority if not all of the tumor.  The doctors told me that normal treatment protocols call for chemotherapy, and radiation but we have some time to make those decisions.

My concerns right now are as follows:  Around 1 p.m. my wife presented with a 101.3 degree fever.

During the afternoon she had three occurrences where she would start shaking violently.  Upon entering the room the nurses would make me leave the room and would not let me back in until after the shaking had subsided, sometimes it would seem like 4-5 minutes

I am scared to death for her can anyone give me an idea what the possible causes are for her current condition?

  • Hi iowahawksfan

    so sorry to hear about your wife. She's so young to be going through all this.

    I'm no medical expert, but I have been supporting/caring for my husband through his glioblastoma journey for the past year. His was in the Broca's area of the brain that controls speech, language and understanding. He's a bit older than your lovely wife. He's 51.  if you have any concerns about her condition or questions about what's going on, ask her medical team.

    I'll try to allay your fears as best I can here though. Before his surgery, my husband had one seizure that we witnessed. It wasn't what I expected a seizure to look like - he just got stuck on repeat trying to have a conversation then got a tad scared and distressed- as did I and our two kids! He had an awake craniotomy a couple of days later as planned and the neurosurgeon debulked as much of the tumour as possible. The first couple of days after his surgery he was pretty out of it. He was very confused and vague. I was told that was partly the after effects of the surgery and the temporary swelling in the brain. He did develop an infection two days after he was discharged and ended  up back in hospital for 4 days. Those first few days are the toughest for all of you but things do get a bit easier.  We got the initial pathology back a week after surgery and the same day met with the oncologist who explained about the 6 week plan for radiotherapy in combination with oral chemotherapy. 

    That treatment regime didn't start for about a month to give my husband time to recover and heal from the surgery. He had an initial meeting with the chemo and radiotherapy team to fit him for his radiotherapy mask. These things are quite tight fitting and he complained it squished his nose! The actual treatment went smoothly and he had no major side effects to the radiotherapy or the chemo drug (TMZ) . By week 4 out of 6 he was really really tired and that fatigue lasted for about 3 weeks after the treatment ended but that's perfectly normal. Your wife's team should talk you through everything step by step when you get to that stage.

    Try to stay calm and positive here. I know its so hard as if you're anything like me, your mind will be a whirlwind of "what ifs" and "why". As you think of your questions, write them down and take them with you when you meet with the medical team. Those initial appointments are information overload and can feel quite overwhelming.

    One thing you need to do is to look after yourself too here. She's going  to need you so it's not being selfish to look after yourself and take some "me time". It's essential! 

    Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. There's also an  Ask an Expert section for your more detailed medical questions, but do allow two to three working days for replies from our expert team.

    I hope this has helped somewhat.

    Sending love and light and hugs to you both. Stay positive and stay strong.  Here anytime you need me.

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • My wife admitted to me yesterday that she was initially diagnosed in March while she was visiting her parents in Iowa...she told no one.  This means her tumor had six months to grow/spread and we don't know what damage this may have done to her chances for survival  It explains a lot of the personality changes, and erratic behavior over the last 2 1/2 months since her dad died.  I am concerned because she has periods of time when she zones out, she continues to have headaches where she demands that we keep the blinds closed, lapses in memory including that she had drove to Atlanta alone last weekend a 1000 mile trip.  We took her home today to her apartment in Atlanta, because the doctors say she is not able to return home to Missouri.  She continues to sleep 18 hours or more per day and complain about pain and headaches.  When she is awake I talk softly and she asks me to sing to her so I'm sure the neighbors are already looking for a new apartment.   she looked at me earlier and she said to me you know I am dying right?  I told her that we don't know any of that and we will get her treatment.  She is insisting that its too late and that I should consider hospice.  Over the last 45 years, I have buried two wives, and two daughters.   I am afraid my wife may be right but I have to remain positive

  • HI 

    Sounds like you've been through a lot. At least though she's admitted about the initial diagnosis. My husband tried to hide the fact he'd sought medical help initially but being in lockdown due to Covid and stuck at home 24/7 he couldn't hide things for long. 

    Talk to her doctors. Get the facts and see what options are available but hard as it is, you need to respect her choices and decisions. My husband declined the off of any further treatment back in January and as a family we've had to respect his choices. Not easy but those weren't our decisions to make.

    Keep singing to her ( who knows, the neighbours may start putting in requests!) and stay strong for her.

    love n hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for your kindness.   Our journey ended early this morning.  Last night she told her mother that she was trying hard to fight this but she didn't know how much longer she could  About 11 p.m. She insisted on seeing me....she told me please tell our daughters that I love them, please don't force them to mourn something they may never understand. Play them our silly videos. please hug them love them and hold them close. Please try to be good to my mom, i know she annoys you, but she loves me....and I love her. I know that this is not what we had planned, and I know that despite the harsh words we have exchanged over the last months....that you love me and I hope someday you will understand I tried to protect you. I will always be your crazy girl .  (that was the nickname I gave her because she wanted to marry a man38 years older than her)  As I was sitting with her around 1:30 am sitting here with her, her breathing was shallow, and I wasn't sure she even knew I was here. Its was taking all of my strength not to take her back to the hospital, but she wanted to be here with us. So I kept vigil, holding her hand and singing to her  she just slipped away.  I know it probably sounds terrible but I waited a few more minutes before I woke her mother.  and together we moved her to the bathtub where I gave her a bath and prepared her for the coroner.  (As a young airman in 1972 at the age of 17 I had done this so many times)   then after she was clean and dried we moved her back to the bed where we dressed her in another pair of pajamas and I called the coroner.

    She made me promise to cremate her, and spread her ashes on our farm where we had enjoyed so many wonderful times with the children.  A short time ago I went over and picked up the death certificate from the doctor, and took it to the funeral home.  Now they have to file it and get a permit of some kind and they are telling me her ashes will be ready in a two days.  My grandson graduates from boot camp tomorrow just ninety miles from here, and as a result my daughter will be coming in for that ceremony tomorrow.   I have asked her to help her mom pack up this apartment and clean it.   I plan to go by wife's office later today and tell her new coworkers and to pick up her personal pictures and stuff.  I can still remember when my forty year old daughters came in for a visit shortly after the wedding.   They wanted to play a practical joke on her and didn't know what I would say.....  I said why don't you do this instead, when you join us at the restaurant tonight run in throw your arms around her neck and call her mommy and tell her how much you missed her.   My daughters made a scene with that one, and she looked up at me and said there are many ways to die.....you maybe should choose one.  

  • HI, so sorry for your loss but relieved to hear things were peaceful at the end for you both.

    You sound a very pragmatic person but don't rush to do everything all at once. 

    There are a couple of other groups on the forum that you may find supportive over the coming days/weeks -Bereaved spouses and partners forum - Macmillan Online Community  and Bereaved family and friends forum - Macmillan Online Community

    Once again my sincere condolences to you and your family.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you again for your kindness and support.  I of course am devastated by all that has occurred, and I feel like history is repeating itself.  My main focus now has to be on two daughters who will be celebrating their first birthday in November and trying to keep her memory alive for them

    Because of my work schedule, and because I procrastinate sometimes, it took me forty-five years to finish remodeling the house on the farm that has been in my family since 1839.  In fact I just finished building the mancave/office that I had promised my first wife I would build in 1972, so I could get my contracts and paperwork off her dining room table. That house is now 125 years old and it was where my grandfather was raised, then my dad and his fifteen siblings, and now my daughters.  I have long thought of selling this home, and since I have dual citizenship moving up to Canada to live on the shore of the ocean in Nova Scotia.  About thirty miles from here was where my great x 6 grandfather raised the majority of his nineteen kids and donated the land for the church and cemetery and formed a church that still stands to this day, although the current building was the third church built on that sight. There are three farms there that belonged to family and have been in the family for over 100 years as well.   So I struggle with taking my daughters away from their heritage and their history so that I can live out my years in solitude watching the ocean crash into the rocks.  So I need to think through this decision before I make it because it will change our lives forever.

    So all I know is that once my wife's ashes are ready for transport my mother in law and I will be flying home, and the majority of her ashes will be spread amongst the roses in the rose garden where she loved to go and read.  then I am going to spend some time with my daughters, and then I will think about what my next journey will be.  In October we have a community wide weekend where we help senior citizens and people with disabilities to make their homes more comfortable or accessible.  This year I drew the house of a 96 year old woman, who honestly is living under horrible conditions.  Her kitchen is 50 years old and does not accommodate her wheel chair, her roof leaks and I believe the windows are as old as the kitchen. so my special gift to her is that I am going to build her an accessible kitchen so that her and her daughter who cares for her don't have to struggle.  The program is going to replace her =roof and her windows to try to help her with heating and cooling expenses.  I am a blessed man to have so many men and women who once worked for my company, who every year volunteer to help do this for people in need in the community,  This year we have 45 people to split up in three crews to get some things done  I was working on hand building the cabinets before I came to Atlanta for my wife.  Now I can go home and in spare time finish them and get them ready to install.  In time I will be fine, but I often ask myself why am I still here, and the answer is simple God is not done with me yet.

  • Sounds like you have a strong family heritage to pass onto your girls but I get the desire to be near the ocean too.

    Maybe you can work out a way to get the best of both worlds.

    take care

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm