5+ years

[blakeswife]

Hi Friends - old & new. I read daily but haven't been participating for a while - I think I've been trying to ignore the progression, I've been sensing. Anyway, I was hoping someone could direct me to some GOOD info regarding the final stage. Blake just told me tonight that he feels like he's in the final stages. He's lost almost 40 pounds which (luckily) he had to lose but he's sooo thin now. He's lost a lot of muscle mass too. He wants to look up info about what the last stages will be like and I'd like to help him with some reliable information. If anyone has a referral, please let me know. Btw, he sees the palliative doc next week & we'll talk to her about hospice at that time. It will be nice to get the info & put it on the shelf until we need it.

Blake has always been so strong & has continued to work full time during this entire experience. I honestly believe that it's contributed to his overall survival. Even after @ 70 (+/-) chemo treatments, he still gets up & tries to go to work every day. Lately, it's been more like 50% and as much as he'd like to continue to work, the process for him to transfer on to disability has begun. Even though he qualified for disability from the beginning & then again upon his recurrence, he's continued to work and he's drawn against his STD when he's missed work and now (if you can imagine) he'll have to go @ 10 weeks without pay between the transition between STD and LTD. It's only money and we'll survive, but it seems like punishment for striving to continue to work. Oh-well, vent over.

Hang in there everyone, Blake had an 8% chance of making it 5 years when he was dx'd in 2007. We've had so much more time together then we would have EVER thought & we are so very, very thankful for the time we've had and the things we've been able to do together, as a family & with our friends over the years.

Thanks everyone. Kathy

[gep]

I don't have much to offer about your questions, but LTD usually requires the person to apply for SSDI. If he applies for SSDI, he should get approved in less than a week as a compassionate allowance. Ask the HR department if he has to apply to get LTD. It will avoid him having to give back some LTD money at a later date. I hope I'm explaining this correctly.
All my best and sending my strongest thoughts your way,
Gloria

[hannahw]

So sorry you're reaching that point. You might find the following link useful: http://www.hospicefoundation.org/endoflife

A few years ago I read a book called "How We Die" by Dr. Sherwin Nuland. It talks about all manner of death, not just cancer, and in some ways it's more a meditation on the culture (and myths) of dying and how the medical world and people in general can manage the challenges, but I found it really helpful. I cried a lot, but it helped me work a lot of things out in my own mind. A friend of mine read it and said she found it upsetting, so it's not for everyone.

[Kathleen808]

Hi Kathy,
You are amazing my friend. What a wonderful wife that you are looking into this very important information for Blake. I know it may be hard, but a number of caregivers have written here during the last months and weeks of some of their loved ones lives. You may get some of the information you are seeking by reading through some of the posts. Since you haven't posted much lately I don't know if you have been reading.
Know that we are here for you Kathy. You have been such a wonderful person to know. My prayers are with you and Blake.

Aloha,
Kathleen

[blakeswife]

Thanks for your help. I'm trying to get an appt with social security to get everything started there as is required by his LTD program. He told work today that he needs to hand over the reigns; it was very sad as nobody ever wanted to believe this day would come. For now he'll go in on days he feels like he can and use STD when he can't. Hopefully getting the paperwork done now will allow a easy transition.

I recall reading a few accts of the final transition but cannot recall who posted them. Does anyone remember? Also, does anyone remember Rachel's website name? (I forget her screen name.)

Thanks again for your help.

Kathy

[so-scared]

Kathy,

I am so sorry that your husband is getting to this point. I did want to say that when my DH applied for SSDI it was a breeze because of his diagnosis. I just don't want you to think that it is a long and arduous process. It took two phone calls and it was done. I am so glad that they make it easy for those who truly need it.

As far as the end of the journey postings, I do know that I saw a link that mojo posted of her journey with her husband. I have not read it. I am just not ready yet. She posted it recently in the Wives of husbands with Stage 4 colon Freaking Cancer thread. If you go to that thread you should see it on the most recent page, I think.

I know that this is a very difficult time for you and your family .... my heart goes out to you. Hang in there and savor every moment!

DeAnn

[Lisahopes]

Kathy, my mom is also at this point.

I started a similar thread here: viewtopic.php?f=1&t=38910&p=277629#p277629

I am not sure what to expect. In some cases it seems that a person is functioning well until days before they die, in others they seem to be bedridden for a while.

My mom is mainly sleeping now and takes a mild painkiller for the pain in her back (doctor's beleive that it is due to her liver tumours).

She says that she is concerned not to have pain and also to have dignity (for her that means her false teeth in and her hair washed and combed - or what is left of it). I have promised to attend to these this.

I found this on dying trajectories: http://www.mywhatever.com/cifwriter/lib ... /4911.html

I found this article by our forum member Surfington to be helpful as to feeding/hydrating: http://sheddinglightonthecancerjourney. ... -and-cons/

In this thread some helpful links were posted by CR Guy: viewtopic.php?f=1&t=31925&hilit=jmarie

The book by Nuland that Hannah recommends was very scientific and for me quite saddening, but helpful.

[dianne052506]

Kathy,
How very hard it must be for you to ask such a question. I'm sorry to hear things have progressed to this point.
No answers here at all, but sending virtual hugs and very real prayers,
Dianne

[Bev G]

Hi Kathy,

I have been aware of some of what you guys have been going through from speaking with Ashlee. You are an incredible partner to Blake. I know that Surfington's posts and blog will help. I am so, so sorry. I know you already know that your friends on the board will be with you, holding you up however we can.

Much love to you and Blake.

Bev

[barbara jayne]

Kathy,
I'm so sad to hear what you and Blake have to face next.
I wish I could say/do something useful for you, I just want you to know I'll be thinking of you.
Love and thoughts

Barbara x

[blakeswife]

Thanks for all your input. I really appreciate it.

I feel like I live a life of constant contradiction; one day good, one day bad, one day happy, one day sad. One day he feels like his days are limited, the next he acts like nothings wrong. Sometimes I think our friends think I'm a dramatic - but, they only see us on "good" days.

Blake saw the Palliative doc yesterday & we spoke about Hospice transition. She feels that if he's able to get his pain under control, he'll improve substantially so she increased the pain patch to 100 mg. She doesn't feel like it's "time" although felt that things were odd during her neurological exam so she's ordered a brain MRI. IF something shows up, it will explain a lot.

He also had chemo yesterday. His Neutrophils were low (1.3) but the Doc said "If Blake wants it, give it to him." Last night, he was about to pass out - was white as a ghost. I was able to get him into bed; he slept for a bit & then was up most of the night on a steroid high. Today? He's at work. This guy won't give up which I absolutely admire but it also scares me. The 'what if's' just drive you nuts don't they?

Again, thanks friends. Sorry I've been absent lately - I read daily and care deeply.

Kathy

[ranger]

I wish you would have more time together.
Check the posts by Gaelen.
yrs,
AMY