Author Topic: Grade 3 inoperable glioma  (Read 152 times)

serpico

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Grade 3 inoperable glioma
« on: April 24, 2018, 03:43:09 PM »
A lifelong friend of mine was recently diagnosed with a brain tumor. He's 46 years old and has a wife and three kids, all of whom are my kids' ages.

My friends and I are doing the usual fundraising to gather financial support, and we're hosting what looks to be a huge 5K this weekend. This is something we can help with, and we're getting a great response from our small, close-knit community.

However, I struggle with how and how often to communicate with my friend. Because he's a well-known member of this community and has impacted so many lives, I know that he and his wife have been inundated with calls, texts, visits, etc., and I don't want to overwhelm them.

Based on some online research, his prognosis is not good, but they are looking into different treatment measures. He or his wife will send a group text on occasion to let us know how things are going, and that's all the updates I need because the last thing they need is one more person prying into their lives.

I guess I'm asking for input from members whose spouses had cancer and potentially knew they didn't have long to live. That prospect isn't something I want to address with him, but if he brings it up I'll be glad to talk with him about it. He's the money manager in his family and his wife knows very little, and as a finance person who is also a widower, I think it's important for him to start passing on some information. I understand he's been reluctant to do so - thinking that he's going to beat this - and I don't really want to be the bad guy by bringing this up.

I want to do and say the right thing, but mostly I don't want to get in their way, anger them, or further complicate their situation. Any advice would be appreciated...
'I think I got some of your pickle'

Toosoon2.0

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Re: Grade 3 inoperable glioma
« Reply #1 on: April 24, 2018, 04:22:25 PM »
My husband died from GBM, a grade 4 terminal brain tumor.  If you'd like to talk more about my experience and what I didn't know I needed at the time to help my husband walk that path and to make things easier for my daughter and me after he was gone, I would be happy to share via pm, messenger or the telephone.  Just let me know.  Mostly, as the caregiver, the hardest thing for me was keeping a lot of the really unpleasant stuff secret while also living his cancer very publicly which is what my husband wanted (he, too, was a figure in this community).  Living that "double life" took a very serious toll on me that reverberates to this day.  If I can offer anything, I gladly will.  I am sorry to hear this news about your friend.  Christine

ETA: my husband believed he was going to beat it until the very end.  This made it very difficult to be the caregiver, so I understand that piece of it, too. 
« Last Edit: April 24, 2018, 04:24:39 PM by Toosoon2.0 »

Abitlost

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Re: Grade 3 inoperable glioma
« Reply #2 on: April 24, 2018, 04:38:34 PM »
Serpico,

Sorry to hear of your friend. My husband died of GBM - Glioblastoma Multiforme, grade 4. There may be no worse disease. Sadly, you are probably correct in the prognosis, although there are some long-term survivors, and hope is essential.

Brain cancer is like no other in because it affects the brain, which of course controls everything. Symptoms are far-ranging depending on where the tumor is, as well as other factors such as swelling, treatment effects, and so much more. His cognition, memory, processing, retention, judgment, behavior, motor control, hearing, vision, and so much more may be compromised and ever-changing, on a day-by-day and even minute-by-minute basis.

That's a short way of saying you may not be dealing with the friend you once knew. His capacities may already be diminished, even if it doesn't appear that way. Trying to have a financial conversation with him, may be fruitless, and invasive, and frankly may best saved for when/if his future widow seeks assistance and/or advice. If it were me, I would simply reassure your friend and his wife that you are available to help them if/how/when they want/need you.

As far as how to help now, you may want to pass on to the wife that the American Brain Tumor Association has a caregiver (and patient) mentor program where they are matched one-to-one with a support person that has been there, because truly the disease is a bear to navigate.

abl

Toosoon2.0

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Re: Grade 3 inoperable glioma
« Reply #3 on: April 24, 2018, 04:56:59 PM »
Yes.  Everything abl said. 

Abitlost

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Re: Grade 3 inoperable glioma
« Reply #4 on: April 24, 2018, 05:15:17 PM »
I also want to add...
Many of our friends stepped too far back when my husband was sick. We both felt abandoned by many friends who felt uncomfortable as we truly were living everybody's worst nightmare, those that didn't know what to do so they disappeared, and those who just couldn't handle it. My husband really appreciated every card and letter he received, as well as every offer of help such as delivering meals, taking him to ballgames, taking him to appointments, etc. He couldn't drive from day one of diagnosis, so everything fell onto me, while also managing small kids. For some of his illness I couldn't leave him alone.

I suggest you offer to take their kids places, bring them toys and books, take them for sleepovers. Bring them staples and leave them on their front porch. Keep in mind that this disease changes so rapidly that it may be hard (and stressful) for them to plan anything in advance. Simply calling and saying 'hey, we're off to the 4:00 showing at the movie, can we pick up your kids?', and if they say no, don't let that stop you from asking another time.

You and your friends could show up and tend to their yard, ask if they need any repairs inside, trade cars so you can take theirs in for service...those type of things make a huge difference.

Also put together an on-call list for them, so they know who to reach out to if he has a seizure or a fall or goes to the ER, etc.

Toosoon2.0

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Re: Grade 3 inoperable glioma
« Reply #5 on: April 24, 2018, 06:25:04 PM »
YES.  All of this.  Thanks for putting into words things that are still hard for me to articulate.  xoxo

Bunny

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Re: Grade 3 inoperable glioma
« Reply #6 on: April 24, 2018, 08:11:51 PM »
My husband was also a beloved member of his community. You’d be surprised how fast people can scatter when the word cancer appears...don’t be a stranger.
It is a fearful thing to love what Death can touch.

Trying

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Re: Grade 3 inoperable glioma
« Reply #7 on: Today at 10:14:09 AM »
I'm very sorry to hear about your friends diagnosis.

 My husband had a very different type of cancer but we went pretty quickly from full on fighting mode to being forced to acknowledge it was terminal.
My husband was well known and loved in our community and I think people responded to the way he chose to handle his diagnosis.  He had me open a Caring Bridge Site that I updated frequently and it gave people an opportunity to share their well wishes and prayers without feeling like they were overwhelming us with calls and texts.  Each time he was in the hospital he encouraged visitors.  Towards the end he had me invite friends and family over for a sort of open house and everyone had a chance to pay their respects to him and he had a chance to leave nothing left unsaid.  It was beautiful and I think atypical the way he chose to handle it.

Follow the lead your friend gives.  Texting or sending hand written notes that don't require a response are a way to let him know you care and are there without the pressure for him to respond.  Offering specific things like "I want to drop off dinner on Thursday, would you like me to leave it in a cooler at your door or I can pop in for 10 minutes". I had friends and family take shifts staying with him for a day so I could attend my niece's graduation party and get a much needed break.  Friends anticipated needs to give my kids rides to activities or to invite my kids out to give them a break without me having to ask.

As far as preparing things financially, it can be brought up as a good idea in case his treatments become too involved for him to manage and his wife needs to temporarily take over.  We tried this with my Dad who was in denial about his prognosis(it didn't work and mom was left under prepared).  My husband, a finance guy, set up meetings with our lawyer, his HR department and his business partner so he could prepare me while he was still alive.  That was awful for me at the time but of course I was grateful later.
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canadiangirl

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Re: Grade 3 inoperable glioma
« Reply #8 on: Today at 12:03:58 PM »
I am sorry about your friend.  Just wanted to support what others have said- there are lots of good ideas here.  My DH never accepted his terminal prognosis (not glioma, although there were mets to his brain later), so I had to come up with creative ways to ensure that some of the administrative things I needed to be dealt with were, like a will, making all our accounts joint, etc.  If you know his wife well enough, that honestly might be the best person to coach or offer financial advice to, out of hearing of your friend if possible if he does not raise those things with you himself. 

I would not assume that because you have a tight-knit community and he is well-known that they are being adequately supported or, if they are now, that it will continue to be this way after the great efforts you are making in fundraising plateau.  Friends SCATTERED, even close ones.  It was just too much.  Where we did receive help over the 4+ years, the best was in respite, people proactively offering to sit with my husband and small child so I could get out to do errands or just breathe, and in (again) proactive help- not waiting to ask but just doing things, like gardening or dropping off food.  As a caregiver, it was a relief not to ask for help but for help to come. 

For my husband, when he became house-bound, he really wanted company but again would never have thought to ask.  He heartbreakingly did not want to be a burden on anyone, not that he was.  He liked to just sit with people; he wanted undemanding company.  He didn't want to talk about cancer, or his non-future, or beating the odds.  He wanted normal conversation and to pretend it was not happening for a bit.  As the person on the other end of the conversation, this can be tough as it is surprising how much we actually talk about future things, and my husband had trouble coping with future talk, knowing he would not be present.  The past is a safe zone, and you might revive some good memories that you might be able to share with his wife and kids later.  My husband liked to look at photos with friends and family, and I did that kind of project with him to ensure his memories of the events in them were captured for our child.  While he was well enough, he got into RPG video games on the computer to pass the time as he was not mobile.  Music became a source of comfort.  My husband loved vintage cars- one thing I organized with the local Jaguar group but could not follow through with because he was too ill was an outing in his favourite model of Jag (1963 e-Type)- I reached out to the local club and someone generously agreed to take him for a spin. That kind of thing.  Try to help him have some fun.  I hope this helps.  Good luck. 

Toosoon2.0

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Re: Grade 3 inoperable glioma
« Reply #9 on: Today at 12:36:22 PM »
This thread is bringing a lot of stuff back up for me - this was the time of year my husband got his diagnosis, too.  Anyway, I wanted to underscore one thing.  About half a dozen people identified themselves as people willing to do just about anything for us and I leaned on them.  Others helped but those half a dozen people (and their families) said: just tell me what you need and we'll do it.  And they did.  They put in a huge vegetable garden for us (we always had one and I couldn't manage on my own); they came and sat (this coming and sitting thing became very important toward the end - it was like a 3 month 24/7 open house at our place); one person helped my husband keep working in his studio until he could no longer stand; others came and sat at hospice while I was at work and couldn't be there.

If you are comfortable approaching his wife, I would do so.  Brain cancer does change the person into not just someone unrecognizable but in my case someones unrecognizable.  It is traumatizing not to know who your spouse is going to be from day to day.  My husband's absolute, determined denial did not help either.  I will never fully recover from it but I had a very loyal, small coterie of people who I let in to help me through it - the personality changes, the falls, the ER visits, the delusions and paranoia, the denial, etc. - and keep me steady (ish).  She will appreciate knowing you have the mettle (and having been through losing your wife, I know you do) to be one of those friends.  She will need that support. 

I hope this makes sense; I still have trouble talking about it. 

« Last Edit: Today at 12:38:37 PM by Toosoon2.0 »