My good friend got bad news yesterday.

[CTyankee]

I posted here about him a while back. Her husband had been diagnosed with a malignant brain tumor that the surgeon at Yale's Smilow Cancer Center could not totally remove. That was last August and they told her he had 8 months to live. She sought a second opinion at Sloan Kettering in NYC and there is nothing more that can be done. Except that the Sloan docs thought he should be taken off all meds, including the antibiotics he was taking that the docs felt were responsible for his declining blood platelets.

Right now my friend is exhausted, both physically and emotionally. She is trying to "keep on" but is breaking down and I am fearful for her. Thankfully, her grown sons are helping her enormously and she has other family close by to support her as well. She and I are co-volunteers with two organizations and I feel that she draws some comfort from her work for these two charities. We're all pitching in but she wants to feel useful and I get that. Of course, she wants to spend as much time as possible with him, but it just wears her out and she needs to get away a bit, too.

I have not asked her what will happen if he stops all meds. I am now fearful that he could pass at any time but I don't want to ask her any more than what she wants to share about his condition...

At this point, we are just trying to be supportive and caring and giving her the needed respite that we can, as her fellow co-workers in a volunteer organization. I guess we have a role to play and this is it. I just wish we could do more...

[mitchtv]

1. sorry to hear that

a close friend and neighbor just got a cancer of the bladder diagnosis, he says he won't let thm remove the bladder, sad.

[CTyankee]

3. How old is he? My friend's husband 64...

[mitchtv]

5. near 80

and this is the third time . His partner of 47 years died of cancer in Dec.

[tridim]

2. Ugh, I went though this 10 years ago with a friend.

It sucks in every way, just try to stay strong and as positive as you can. Waiting for the last day is a very weird feeling.

[MADem]

4. Is it one of those Ted Kennedy tumors?

I have a friend with one of those who was diagnosed well before Ted and is still hanging on. He's a bit of a miracle. He's still taking meds, doing chemo, has done two rounds of surgery, taken every experimental treatment that has come down the pike, even off-label prescription acne medication (which gave him Crohn's but shrunk the tumor) etc. He has a tremendous support system of partner/family, though, with respite opportunities provided by friends to keep the worst of the exhaustion at bay. His appearance is greatly altered as a consequence of the drugs he has to take, and he has trouble with speech and mobility, but he "gets" what's going on and retains a joie de vivre despite having to face the inevitable, eventually, square on.

It's still a tough slog, though, and, let's face sad facts, it's a very long goodbye. It's probably much harder on the family and friends than it is on the patient (in a strange way--if that is any consolation).

If he wants to go, your friend should think about hospice, if available. But these things sometimes have an ebb and flow--my friend had some bad and seemingly dire/imminent times, was able to beat back the tumor (slow growing) through surgery and medications not once but twice, and now is keeping the thing in a holding pattern for now--knock wood.

It's never easy. There's so much pain--physical and emotional, and so much regret and helplessness.

[CTyankee]

7. He's not out and about so I really don't see him.

I get the feeling that he's not nearly as active as he was, but she doesn't say whether he is ebbing. I think that stage is to come but I don't know when.

From what she tells me, he is not all "there." So I get the feeling that he really doesn't fully know what the situation really is...

[MADem]

11. My friend isn't out and about much, either.

A transport wheelchair is helpful on the odd occasion where there's a little luncheon out, or a visit.

It's sadder still if he's drifting in and out--my friend is still pretty much with-it, but speech is impaired which makes communication interesting.

Sometimes, when the docs give you a timeline, it's on the early side--so eight months would be the minimum, and maybe a year the max. There is so much variability with those tumors, though, from where they are located/how accessible are they for surgery, to how aggressive they are, to how well the patient responds to meds.

If he's not going to get any meds at all, though, it may be a fairly accurate timeline.

It sucks--not much to do but to "be there."

[CTyankee]

15. I can onlyguess why the docs said "no meds." I guess because they felt some of them

weren't worth it and the others might be a deterrent to his health.

I get that, but what I don't know is how much of this hastens his death?

[MADem]

16. Well, if they aren't retarding the growth of the tumor, it's going to grow and get him.

With my friend, they aggressively operated, got as much as they could, and every drug/chemo/radiation he does is designed to beat that little bastard tumor into submission. He is checked every few months and the growth of the thing (or lack thereof) is monitored.

So far, he's been keeping it at bay, he's able to withstand the medical insults to do just that, but every time there's a trip to the doc for the tests, it's a breath-holding experience waiting for "The Word."

It's not for me to say, but it seems like the doctors don't think there's much they can do for your friend. It could be due to the location of the thing, or how aggressive it is, even with meds.

They've gotten good at lots of stuff when it comes to cancer; but there's still so much they don't know.

[CTyankee]

17. He had all the aggressive meds after his surgery, in which they got "as much as they could".

I don't know who else they can get another opinion from. Yale's Smilow Center and Sloan Kettering in NYC are about as topmost as you can get...

[MADem]

18. I know. It's not like they went to the KMart Kancer Shoppe.

I'm thinking it's the location that is problematic--or maybe the thing is intertwined around vital areas of the brain.

My friend has had his tumor dug out twice, but it's in that "cell phone" location on the side of the head, and is fairly easy to get to, I guess.

It sucks to feel so helpless.

[CTyankee]

19. Yes, my friend told me it wasn't possible for the surgeon to go that deep.

It's tricky when it is in the brain.

However, when I contrast this friend's situation and the one another friend had when her husband dropped dead suddenly one afternoon, I think having the time to deal with the grief and to say goodbye is better. My other friend was in such a state of shock it took her a couple of years to finally make her peace with it, even if that is nearly impossible.

[MADem]

20. You know, there's so much truth in what you say. It's an odd comfort.

When someone is taken unexpectedly, there's no time to 'process' the death/absence/life change. You're just flung into it and forced to deal with it. Sometimes, "dealing with it" consists of ignoring it until it just smacks you in the face like a three day old fish and you have no choice but to confront the profound upset you quite naturally feel.

OTOH, when you have a "long goodbye," you just can't help but think about what the "after" will be like and steel yourself against the day when the inevitable happens. You still do the grieving thing, but it's a bit less brutal because you've prepared for it mentally (and often, phsyically, with the deceased having had the time to do the planning for ceremonies and so forth--nothing worse than trying to deal with that unexpectedly).

I'm glad my friend is able to have his long goodbye with his friends and family; I just wish him more good days than bad as he trundles down that road.

[shireen]

6. for now, the most important thing is quality of life during his remaining time

Keep him comfortable.

You've described your friend's trauma, and it's just heartbreaking. How is her husband holding up?

You're already doing all the right things, just being there for her. I don't know if there's anything else you can do.


At some point, you need to talk to her about hospice care, either at a hospice or at home.

I'm so sorry to hear this. It's a sad helpless feeling .... :hug:

[CTyankee]

9. Thanks for suggesting hospice. I had forgotten about it for a bit.

I had two friends who died in the hospice here in CT. I thought it would be depressing but when I visited them there, I was uplifted by the utter beauty of the place in the way they cared for the patients.

She may opt for home hospice care, however. I think she wants to keep him close. She just needs to get with her other communities, such as us, her volunteer community, to keep going...

[DataException]

8. bummer..

[Auntie Bush]

10. Ipersonally think the caregiver would like you to ask questions.

They may want to talk but are shy about it. You could give it a try and watch her reaction. When my son died...everyone was afraid to mention it...like he no longer existed and never talked about him. There were many things I would have liked to say...if not just reminiscing. I didn't bring up the subject because it might make them uncomfortable. My niece used to mention him and I told her how nice it was...so she continues talking about him to this day. Again, I say, talk to her. When people have something troubling on their mind they'd probably like to discuss it with someone. Well that's my 2 cents worth.

[CTyankee]

12. She does and we do, when we go for coffee and have a conversation about him.

You are right. She abruptly "spills" when I ask a direct question. I think it does help. It just depends on the context. When we're with our group I can't engage her the way I can when we have a one on one conversation...

[n2doc]

13. I know it sounds trite, but make a few dreams come true for her

Sometimes little things mean a lot. When my Mom was dying of cancer her friends brought her out to a place where she used to ride, and let out a bunch of horses to run by her, free. Just so she could see that one last time since horses were one of her passions.

Bring some joy, even small, why you can.

[CTyankee]

14. what a nice engagement...just so free and happy...

I'll look for something like that...

[LeftishBrit]

21. I am terribly sorry to hear this

All very best wishes to your friend and her husband.

[snagglepuss]

22. Sorry to hear this. Her just knowing that she has caring friends like you

is an immense comfort during a very difficult time.