glioblastoma grade iv: coping as caregiver

I new to this site. My fiance (love of my life and best friend ) is 48 years old, male, diagnosed with GBM IV. On November 28, 12 he went to bed with bad headache and that night he went into coma. That night at hospital his brain was drained, tumor discovered (size of large lemon in temporal parietal lobe right side). His brain had shifted to one side and his brain stem was crushed. Doctor gave him one in a billion chance of coming back to consciousness and if he did, doctor said he would be completely brain damaged, after 90% resection. Morning after surgery he was back, conscious with very little neurological deficit. Doctors and nurses were stunned. We received a miracle. Our prayer is to keep the miracle going.

My love is now two weeks into radiation and one week into chemo. He's been doing quite well because his attitude is unstoppably positive. Today he had his first headache since surgery. He was disoriented and experienced ten seconds of paralysis in left hand. It's a terrifying experience to be caregiver and feel so powerless. Today, I couldn't reach doctors and struggled to decide on a ten scale when the headache or symptoms were "BAD enough" to take him to hospital. Also, what other symptoms might indicate he is in trouble? I would love to hear from other caregivers and from patients with this horrible disease. Can't even believe we are on here asking such questions.

Our prayers to all those suffering. Any insight greatly appreciated. 

Amy

Amy, as long as you both keep positive and hold on to eah other, you should have an easier road, any negativity is unproductive. My husband is also going through this (with me and our girls along with him). As long as your sweetie remembers YOU are also going through this WITH HIM, it should help. Don't hesitate to ask for help. If someone offers help, assign them a task, DO NOT wait for them to be specific, tell them what you need and let them do it. It's so easy for a person to say "whatever you need", but until we actually accept and assign duties, it's just words. The best of intentions are great but help is so much better. Remember to take time for yourself now and then, have someone sit with him, or take him to radiation treatments from time to time, while YOU do something for you ! Go to a movie, get a mani/pedi, get your hair done, something, even if it's just taking a nap while he gets taken to a radiation treatment or two. HE should want this FOR YOU, as well. Spend lots of quality time together, don't always talk about cancer, but do set aside some time discussing important issues and make sure to get an Advanced Care Directive done. Also, as a girlfriend, know this, his family can take over as caregivers at any time during his treatment, unless you have it in writing, giving YOU authority as his caregiver (I suggest power of attorney, as well as his written consent as caregiver on the Advanced Care Directive). The forms are easy to find online. Fill them out and have them notarized. If you two planned on getting married at some point, I would suggest you go ahead and do it. Wives have rights, girlfirends do not, in the eyes of the law. If you have any problems with him or his family at all, this will magnify those problems. Also, allow yourself to cry and hit a punching bag, if you feel the need to, get those emotions out, it's not healthy to keep everything bottled in. This is not being negative, but it will help you deal with this.  I wish you all the luck and I will send good thoughts out in the universe for you. I wish I had someone tell me these things a year ago. 

Lori

Hi Amy,

One thing I love about my husband's neuro-oncologist is that he told us we should never feel "alone" and they're always reachable...  I suggest you ask your doctor what to do if the headaches get very bad - the doc should know best...  Also, ask your fiance's doc who to call in case you can't reach them?  It's very important in this type of case that you have someone you can reach. 

I don't want to give any advice about when to go to the ER or when not to...  But your doc should definitely be answering those questions for you - if not, hopefully you can find somone else who can better help you guys?  :(

PS- one thing we learned (the hard way) is that the steroid dosage is VERY important - too little can cause a multitude of problems (disorientation, confusion, difficulty walking, etc).  Just something to keep in mind if/when the doc starts tapering the dose.

I hope this helps...  Good luck - it's a difficult road to be on...  God willing, we'll all get through this...

Sarah

Greetings Amy:

My wife Maria of 33 years was also recently diagnosed with GBMIV. She has not begun radiation and chemo yet, but will in two weeks.  She had surgery to remove a tumor on December 24th.  Take it one day at a time and realize it is all in God's hands.  Think positive and realize you and I are not in control. We can only be strong for our loved ones and encourage them to stay positive and spiritually strong.  When fear, doubt, and sadness sets in, say a prayer and think of healing and remember God is in control.  You are not alone.  I will also pray for you. and your fiance.  Jerry

Hi Amy

19 Months  ago i found myself in the ER with terrible headaches, 2 days later i was in ICU recovering from the partial removal of a tangerine size tumor  from the front right area of my brain, and a diagnosis of GBM.

 On 1/11/2012  the composite image of my MRI and PET  showed no cancer!

 This was accomplished through radiation, taking temodar and Avastin. and a strong positive attitude. I believe my strong positive attitude has helped more than any thing else.  Wishing you and your loved one the Very Best in fighting this cancer. Stay strong and positive.

Richard

On Jan 09, 2013 4:20 PM rickglio wrote:

Hi Amy

19 Months  ago i found myself in the ER with terrible headaches, 2 days later i was in ICU recovering from the partial removal of a tangerine size tumor  from the front right area of my brain, and a diagnosis of GBM.

 On 1/11/2012  the composite image of my MRI and PET  showed no cancer!

 This was accomplished through radiation, taking temodar and Avastin. and a strong positive attitude. I believe my strong positive attitude has helped more than any thing else.  Wishing you and your loved one the Very Best in fighting this cancer. Stay strong and positive.

Richard

Hi Richard,

wow, that's amazing!  may i ask how big the remainder of the tumor was (after surgery)?  im amazed the treatments 'killed' the tumor and am looking for some hope for my husband - radiation and temodar didnt do too much for his inoperable tumor (2 cm but dispersed) but avastin caused it to shrink in half!  still on avastin, thankfully...

thanks!

sarah

Amy, I am sorry you find yourself here too.  Jan, 18,13 will be 20 years since my first of two surgeries for GBMIV.  It is much easier on the patient than the caregiver.  I have few noticeable deficits but my brain works much slower and fatigue although not nearly as bad as at first is still my main problem.  My poor husband never knows if I will wake up as me or a toddler needing help with most everything. My main piece of advice is be patient.  I too received a miracle. Prayers for continued progress for your fiance,   kathleen

Richard. Wonderful news. Thank you so so much. I am grateful for your insight and so happy for you. Yours is a story of hope and wonder. My Jeff is young and vibrant a three time Ironman finisher and the kindest man I've ever met. Every day that followed that he woke up from coma, resection and diagnosis, doctors ask, "how you feeling Jeff?" His answer remains the same. " I feel amazing. Wow.  I am so lucky." So, if you say attitude is huge part of this process then he is in good standing. Thank you so much. 

Kathleen,

Your story of hope and miracles brings tears to my eyes. Today is my birthday and you put the icing on the cake. You made our night. THANK YOU SO MUCH for sharing with me. Oh Lord, I am so so happy for you inspired by your story. Jeff has some short term memory loss and some minor stuff going on. But, wherever this takes us I feel so honored to be on this journey with him. I thank you for your advice on Patience. That I will do. I will do whatever it takes. I'm sure your husband is honored too,  no matter whether you wake up needy or independent. Love is infinite that way.

You are in our prayers always. Miracles are with us.

Amy