Today I Cried - Latest Comments

Re: Symptom progression in brain cancer patients (what caregivers should expect)

David Haas — Thu, 06 Oct 2011 14:27:59 -0000

Hello,

I have a question about your blog. Please email me!

Thanks,

David

Re: He died in October and I’m still reeling

admin — Sat, 24 Sep 2011 00:01:27 -0000

No, I didn't forget. It's still too difficult. Wish I could be of more use to others though.

Re: He died in October and I’m still reeling

draqon@umich.edu Lav — Tue, 20 Sep 2011 18:17:38 -0000

how fast we forget...your last post was on June, perhaps for the better.

Re: What is good caregiving for a brain cancer patient?

BKJ — Sun, 17 Jul 2011 04:20:54 -0000

My husband was diagnosed in May 2010 and was given a year to live and now its been 14 months instead of 12. I'm thankful to have him yet here but it is so tiring.

Re: At times, evil thoughts

BKJ — Sun, 17 Jul 2011 04:16:52 -0000

I certainly know how you feel.

Re: It takes six months to absorb that your loved-one is dying

Kathie_heard — Mon, 09 Aug 2010 18:51:47 -0000

Hi Again, your father is lucky to have you. If we think of all the people out there who don't have someone to love and care for them, it is quite sad. My dad's radiation treatment seems to have helped his tumor, however not his memory. I know this is very frustrating for him and those around him. He admits it to me when I speak to him on the phone. He had a cat scan done in June which showed the tumor had shrunk but they found more spots on lungs. I spoke to him this past weekend and his doctor is sending him for another cat scan. We'll see what that shows. He seems to be doing okay for now.
He's a trooper in all this but I know what the end will be and I too am not looking foward to it. But we will endure, if the tables were turned they would do it for us.

Take care as I am sure you are doing a great job.

Kathie

Re: At times, evil thoughts

admin — Fri, 06 Aug 2010 14:30:32 -0000

It took me a while to write back. Exactly what you stated in your comment is the thought process that has been running through my head. I appreciate you taking the time to write and sharing your experience.

My picture of inpatient hospice was a cross between a nursing home and a hospital. But in NYC, all I'm finding is hospitals, like Calvary. I feel he's too far gone to go into a standard nursing home facility and Calvary tells me he's not gone far enough for them to accept him. Meanwhile his brain cancer's growth has surprisingly plateaued which means I just don't know what to do with him. I don't know how to be fairer to my wife, either.

Wow, thank you for writing. I really needed your words even if I've come up with no solutions yet.

Re: At times, evil thoughts

anonymous — Mon, 12 Jul 2010 05:59:38 -0000

years later I wake up in the middle of the night traumatized from witnessing my mother in law's passing. It must be very difficult for your wife to live this every day. I was honored to be there to help my mother in law and loved her dearly, but the experience left me not wanting to ever set food in that house again. I am not sure if it all went on in my home if I could deal with living there. In retrospect I think an in patient hospice might have been a better choice. Living with "death" on a daily basis like your family is doing is not the healthiest thing for those who will go on living. I know I am a complete stranger to you but I hope you will consider the idea. If your father is not living with you, then you can know people are caring for him when you are not there and you can visit with him but then leave. At least you have the escape time when you go to work. Your wife it sounds is spending more time there. I think you are right to be concerned for your relationship, and for your wife. My husband and I grew closer through his Mom's passing but it could have easily gone the other way. It is too much stress having this in your home. That is just my personal opinion from my experience but maybe see what other options might be out there to move this scenario out of your home

Re: It takes six months to absorb that your loved-one is dying

admin — Mon, 10 May 2010 19:03:25 -0000

Kathie,

Thanks for taking the time to write your story. It helps to know others are going through similar things, even if from different perspectives, so your sharing is really appreciated.

I'm sorry I didn't respond sooner. When you posted your comment, I was in the hospital with my father. He was there for only a day but it caused so many complications that I was left reeling for a couple of weeks.

I hope your visit to your father goes well. It will be difficult. You'll be surprised at how much your stepmother has to do for him but I think you'll also be relieved that some of what you imagined wasn't nearly as bad. It's different for all of us. I'm sure you're doing the best you can from where you are and nothing more can be asked of you.

I wish you and your family well and I hope to hear from you when you get back.

Re: It takes six months to absorb that your loved-one is dying

Kathie (Canada) — Mon, 26 Apr 2010 15:24:34 -0000

Hi, Thanks for your story. I, too, have a father who has metastatic brain cancer. He was diagnosed with it last November 2009. He had five days of radiation treatment for it. His brain cancer is in a very similar spot and his memory is getting worse everyday. He is cold all the time and I think he is depressed. Unfortunately he lives far away from me so I do not have the luxury of having him live with me or I would. He does, however, have my step mom who truly does her best, but I think it is starting to have its toll on her now.

I know there is nothing more we can do for him but try to keep him as comfortable as we can and be as understanding as we can. I am going to go visit him in May and I am afraid of what I will see. I say this as he is not eating very much these days and I think it is because he feels he is not hungry or he just forgets.

I talk to him every week to see how he is but I know he says he is fine just so not to worry me. I don't know how much time we have left with him, but I am not looking forward to watching him die from this disease.

Re: The pressure for a second opinion

admin — Mon, 22 Mar 2010 15:52:37 -0000

Because the pressure is so great to get a second opinion, there are actually few bureaucratic obsticles for obtaining one in the US. Of course, cost may be a factor, depending on the insurer and, as I mention, the whole process in general is incredibly complicated.

Thanks for commenting and for doing what you do. Every bit of help makes this ordeal a little less stressful and improves the quality of life for everyone involved.

Re: The pressure for a second opinion

Helen — Wed, 17 Mar 2010 14:50:40 -0000

Hello

One of the things we do at brainstrust (a UK based charity) is fund an immediate second opinion as they are really hard to get on the NHS. So I am really appreciative of your comments on this subject; it reaffirms what we do.

Re: The complexities of humor

admin — Thu, 11 Mar 2010 00:41:48 -0000

I simply can't imagine what you are going through. I used to work at the Lymphoma Research Foundation and have absorbed enough to know that there is great hope for your son. Please stay strong; you will all get through it. And thanks for taking the time to share on my site.

Re: The complexities of humor

sritter — Wed, 10 Mar 2010 20:20:58 -0000

My 4yr. old son Sven has leukemia it has been 11 months since diagnosis he will be on chemo for the next 3 years one of his meds...steriods makes him crave food and lots of it...we try to laugh more so he does not see our worry, We all now sleep in 1 bed, just feels safer that way, on a steriod week Sven poked me and asked me to make him hotdogs I looked at the clock and it was 5am I woke my husband and we all went to the kitchen to make hotdogs, my husband and I joked in several growling voices "I want a HOTDOG" we turned to Sven to join in the laughter and joke he had a stone face and I asked him to laugh and joke with us, with the look of a 40 yr. old he told us he was not laughing and it was not a joke! I He knew he was not himself, he knew something was wrong with him. I cried the rest of the day!