One patient with glioblastoma still alive nine years later
by sarah06779 on Wed Jan 09, 2013 08:10 AM
After reading "Friends With No Boundaries", I had to add this one. We have the opposite problem. My husband has Stage IV Colon Cancer with mets to liver. Diagnosed 4/2011. Age 49.
My husband used to get an occasional phone call from friends, but unfortunately, not anymore. He and I have been alone with his cancer. Family members call and ask about his condition and his friends email me and ask about him, but no one outside of our family ever wants to talk directly to him. I feel sad for him because I think he feels lonely.
Ever since we told our friends about the cancer, they've basically abandoned us. I think they feel awkward and don't know what to say. My husband's cancer is very advanced at this point (21 months since DX). He sleeps most of the time and has gone from 180 lbs down to 128 lbs. His complexion is grayish and he's very weak. I just think it would be nice if some of his friends would call him and ask how he's feeling.
I don't know how much longer he has. His doctor tells us "take it one day at a time". But there will soon come a time when his well-meaning friends will no longer have the opportunity to talk to him at all.
I've cut my work hours back to 6 hours a week just to keep my foot in the door. While there, no one talks to me much anymore. It's like they don't know what to say to me. I have one friend who openly asks how my husband is doing and it's so relieving to hear that someone seems to care. Thing is -- whenever she asks me that question, everyone else in the place suddenly grows silent and you can cut the tension with a knife. What's with them? Do they think I'll break down and cry? I think that tears help cleanse the pain.
Actually the only time I ever shed a tear at work was the time when two of my co-workers asked me when I'd be back to my regular schedule - making it clear to me that they didn't appreciate having to fill in for me. I was stunned that they'd even ask.
Does anyone else have this feeling of abandonment or negativity from others?
by eternalife on Wed Jan 09, 2013 03:44 PM
I can relate to what you are experiencing, we have friends and relatives who once we tell them the current news about my husband's EC, we see their faces and hear their voices with relief.. almost like well we asked the " dirty question" , how is Mark? ... I think people are afraid to talk about disease / illness to others unless it is about themselves... it's too bad. We all have to face our own mortality, one day.. there is no changing that... we will face death ultimately. Stick close to those who show love.. and to those who you can see the face of Jesus.... this journey with cancer is a tough road for everyone. People are only human... and will let you down. Stay strong.. check out the posts on the bereavement board, you will see what others have faced... not easy at all.
by MizJay on Thu Jan 10, 2013 04:43 AM
I'm really sorry to hear about what you're going through, Sarah. It sounds really lonely for both of you. My husband was recently diagnosed, and I'm finding it really hard to cope with people's reactions. A lot of people don't respond the way I would expect, with some sort of expression of concern or encouragement, like a casserole or a card, as I would, so I'm a little taken aback. I am finding it easier just not to mention it to people. Then I feel like I'm pretending things are normal when they're definitely NOT normal and life begins to feel a little unreal. I guess this will change when his physical appearance changes. I hope people don't abandon us. That will hurt.
by sarah06779 on Fri Jan 11, 2013 08:16 AM
What a beautiful response. I can see that you can empathyze with our situation. It really gives me something to think about.
Thanks so much.
by sarah06779 on Fri Jan 11, 2013 08:42 AM
And thanks. It seems as if all that we have is each other. How long since your husband's diagnosis? It's really sad that people are too uncomfortable to mention it in front of you, as if he doesn't exist and the "CANCER" doesn't exist.
The pain is undescribable. You're losing your life partner and best friend. You will cry, but you need your friends now more than ever.
Someone else's response mentioned the brievement page on this site. Although our husbands are still with us, it may be a good idea to get a better idea as to what we'll go through in the end.
I get what you're saying when you say the whole experience makes you feel so unreal. Once I got past the initial shock, the tears set in ... every night when I was alone, I'd cry. Then there's no one to call -- I could call them as long as I don't bring up the "C" word.
At this point, I'm so busy that I don't have much time to think, but when I find the time alone, all I think is how much I'll miss him. Then it really kicks in -- if I'm feeling abandoned now, wait until he's gone. I'm afraid that people will avoid me like the plague.
I'm already planning to go away for a while because it will be far too lonely in this house without him.
MizJay, please don't hesitate to reach out to me if you need to vent. What kind of cancer does your husband have?
God Bless and thanks for giving me something else to think of.
by MizJay on Sat Jan 12, 2013 05:36 PM
I really appreciate your responses. I, too, am glad we have each other. My husband was "officially" diagnosed with Stage IVa oropharyngeal cancer (base of the tongue, with spread to lymph nodes on both sides of the neck) on December 17, when we got the biopsy results. Really, though, we knew on December 13 when we saw an ENT about the lymph nodes. The ENT was very good about assessing what was going on. It's hard being diagnosed around the holidays, both because you don't want to "ruin people's Christmas" by telling them about it, and because it's hard to get the whole process of staging and pre-treatment testing started. Even though I called the best treatment center in the state before we got the biopsy results, he has yet to begin treatment. He will begin on January 22nd. He'll be having chemotherapy and radiation at the same time. The radiation will be every day. I'm taking a leave of absence from work (although I'll be working remotely on a laptop about four hours a day), so I can drive him to the treatment center, about 45 miles away) every weekday.
When I look at the message I wrote before, I feel a little guilty about complaining so much. Some people have been wonderful, especially the people at work. My employer has been wonderful. They are doing everything they can to support me, so that I will be able to see to my husband's needs during treatment and still get full salary for up to ten weeks. The truth is, I just feel emotionally exhausted (already!), and it's hard to cope with people's reactions sometimes. Especially since we've been in this waiting mode for so long. I want to start treatment. I know it will be awful, and the side effects wil be brutal, but right now the cancer is growing before my eyes, and I want it to be stopped. Who knows what day it will pass the tipping point between curable and incurable? Maybe it passed that point yesterday. Maybe it will pass that point today. Maybe that point is the 22nd of January, or the 24th, or the 26th? You can see what it's like inside my tortured mind right now. Not very pleasant.
Anyway, thanks so much for letting me vent. Please feel welcome to vent to me, as well, and if you would prefer, please feel welcome to send private messages.
by dexter12 on Wed Mar 20, 2013 04:29 PM
Hi sarah I just lost my Husdand on 3.13.2013 ,He died from gb It's been 14month since he was diagnoist,The freinds have been great so far It is avery lonenly disease if there are no freinds I am so sad for us that have no support from freinds Yes the pain is undescribable and we need each other in every way possible
by lolis33 on Wed Mar 20, 2013 06:02 PM
If your friends are not present please don't forget to reach out and call your home church, synagogue, temple or wherever you find a faith/spirit community and plan a home visit. I've made many visits with survivors in a variety of stages with cancer and it meant the world to me and the family/individual we visited and prayed with along with hugs, some tears, and usually a spot of laughter. I have memories of friends who've died and these visits are some of the most meaningful...to me.
God bless/keep/strengthen you all. You are not alone.
by Randy1958 on Wed Mar 20, 2013 06:42 PM
I was diagnosed just under thirteen months ago with GBM, had proton radiation and seven months of chemo (oral Temodar), and in that period of time I really had my eyes opened by the way people have treated me. I have an older sibling who means well, though in his case it should be a capital crime. In his mind there are two ways of doing things, his way and the wrong way. He wanted to assume control of my medical treatment. I finally had to ask him to leave the house. Haven't seen him since.
Another sibling asked if she could deliver my eulogy. I attempted to deflect the comment by telling her if it came down to I wasn't even going to have a funeral, but she persisted: "Funerals are for the living". I told her the living would have to get along without mine. Then she began asking questions about my daughter and her boyfriend, and I decided it was time for her to leave. After my first MRI since beginning treatment (late June) she wanted a copy of the report. I asked why. She said, "It's a doctor thing," to which I replied, "You're not a doctor", which ticked her off to no end, all of which bothered me about as much as a walk on the beach.
I had a friend from work who heard about my diagnosis and said she's come over and visit. . . . never saw hide nor hair of her. I sent her a text asking how she was, and she responded with a flip comment, "When are they gonna start shrinking your brain lol?" I can see why her husband divorced her.
For the most part my family and coworkers have been supportive, my boss told me no hurry to return, I had over a year of sick time on the books. I hoarded sick time the way a miser hoards gold, and it certainly paid off. In my precancer days I even donated vacation time to the various time banks that were established for people who had serious long term illnesses, or their caregivers. I felt they needed time with their loved ones more than I needed to lay around the pool or take in a movie.
Anyway, Friday afternoon I have another MRI, and next Thursday I'll meet with the doctor to learn the results. So far I haven't had a recurrence, so wish me luck!
by dexter12 on Wed Mar 20, 2013 07:51 PM
I wish all the best in the . keep hope alive
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