When it's time, you know...

[Gaelen]

Yesterday my local oncologist and I agreed that I am too weak for more chemo, need stronger pain control, and it's time for a referral to the local hospice facility.

I have always set as my standards:
1- when I could no longer live/participate in my life
2- when chemo is doing more harm than good, or stops working
3- when pain control becomes a bigger issue than treatment
then it is time, in my mind, to move to a different focus of care so that I continue to have control over the course of my treatment.
I have also known for a long while that I didn't want to be surrounded by my bickering family in my living room during my last hours. Give me a medical (if home-like) facility, professional caregivers and drugs - in ample quantities, 24/7 - along with people who can move the bickering family members out of earshot when they start to annoy me.
My doctor agreed with me, and promised me that he will be my prescribing doctor, no matter where I am, for as long as this takes.

I'm not in critical condition. I'm not going to die tomorrow (I don't think.) But I am deteriorating past the point where things are under control, and I need stronger pain meds. I'm calm, rational and emotionally under control. The referral to hospice also removes the fear of the emergency hospital admission from every doctor visit.

Please - those of you who may be tempted to respond with messages like "keep fighting" and "never give up!" - just hold your thoughts, okay? For some of us in this situation, that's just not a helpful message. It's also not the approach I've ever taken with my cancer, and eight years in, it's too late to 180 into that now. Things happen, things change, and you have to learn to adapt.

To those who are tempted to respond "but you were fine just a month ago" - yep, you're right. Things can change and deteriorate that fast with colorectal cancer. Things are in a delicate balance, and it doesn't take much to unbalance them. But seriously, being "fine" a month ago has zero relevance to how I am today. My kidneys were failing in January, and if they deteriorated, we all knew that it would be like watching dominoes crash. Borrowed time is sort of par for the course for a person living with active stage IV cancer. Never put off until tomorrow....

This was not a difficult or tortured decision. It's been a very normal, natural, peaceful decision to make. I hope it is equally easy for others in this position when the time comes to take the next step.

[beth568]

Pat, thank you for sharing this with us. I quite agree with your reasoned, realistic approach, and hope that I'll be able to make decisions the same way when the time comes.

You're a role model for us, in so many ways - in your advocacy, in your work to educate people about CRC and its treatment, and now in your decisions about how to take control of your life, your health, and decisions about the end of life. This latest development is just another part of that, and it means a lot.

You are in my thoughts. I wish you comfort and peace as you face this challenge.

[tammylayne]

Once again Gaelen, you humble me with your words of wisdom. You are one of the strongest, no nonsense women I know, and you help so many with your thoughts and words, especially this post. I believe you give others the strength to understand and make decisions they struggle with. It is a gift. Thank you.

Sending you lots and lots of hugs....

Tammylayne

[Mona]

Galean, I admire your strength and clear thinking.
I hope I will be able to do same in the future when my time comes, I hope not too soon.
You are in my thoughts.
Maria

[weisssoccermom]

Galean,
There's not a lot to say. I respect your decision and realize how difficult this has all been for you. Certainly no one wants to get to this position, but being realistic (and yes, for those who won't like my choice of words, there are times when reality has to be clear and in focus) it sounds as though you've made the right decision for you. I can easily understand the conditions that you spelled out - I do believe it's what most, if not all of us, would truly want.

Take care of yourself. Let others help you during this time. It's going to be difficult but hopefully you'll have an ally in at least one family member who will step up and, as they say, 'stop the madness'. No one needs that type of familial bickering!

While I understand these days are difficult, particularly with your pain control issues (and, btw, I hope that they are being controlled), please try to stay in touch.

Take care. Sending cyber hugs,
Jaynee

[jscho]

Gaelen, I agree with the standards you have used to guide your treatment decisions and applaud you for being able to make your decision to call in hospice care with a peaceful spirit and calm mind.

I have always set as my standards:
1- when I could no longer live/participate in my life
2- when chemo is doing more harm than good, or stops working
3- when pain control becomes a bigger issue than treatment

Although I hope you feel well enough to continue to share your wisdom with the forum for some time, I will miss hearing your voice when that time comes.

As French mariners say, "bon vent".

Jeremy

[pbyers]

What can be said. You have said everything so perfectly. You are such an inspiration and an incredible person. You have such a great attitude and I admire you so much. God bless you and keep you on this journey.
Pam

[lydia123]

Gaelen,

Having you and your "voice" in my court during these difficult few years has been an enormous and cherished gift. I am also grateful that you made the trip to DC this past march, even though it was hard for you to do so. Thank you from the bottom of my heart.

I wish you peace (which it seems you have found) and I offer you my strongest thoughts as you begin your discussions with Hospice.

Love,

Lydia

[RayGirl]

Pat-

You are such a level headed person, I know you aren't making this decsion lightly. I would never give you a dose of pollyanna juice, my only hope is that you keep living life to full extent that you can.

I'm so grateful I met you this month and I'm sending hugs just so that you know how much I care.
Rachel

[cptmac]

I was so very sad to hear your news today.... I wish you a safe journey in this new phase of your life.

[NWgirl]

Thank you for sharing this recent development with us. Like Lydia, I am so thankful you were able to come to COC this year. It was such an honor to meet you in person and heck, you're just FUN to hang out with. I wish we lived closer. The fact that with a cancer diagnosis things can change on a dime is a further reminder to live life NOW (as you have always done) and don't put off till tomorrow what you want to do and are able to do today.

I admire and respect the sense of peace you have worked so hard to attain. I hope I can find the same inner strength you have tapped into to help you explore this next phase of your journey.

Thinking of you always my friend.

[BrownBagger]

All my best to you, Gaelen. If there's anything I can do for you, of course, just ask--including just stopping to say hi.

[jjlist]

thank you for being here for me.
you have been a wonderful source for me.
you have raised the bar for strength and dignity for me.
you have been an inspiration and a role model for me.
Jim

[Surroundedbylove]

Gaelen,

Thank you for continuing to share your journey with all of us. I respect and agree so much with your decision making process and I feel like I learn from you and people like surfingon so that whenever I or a member of my family come to that time in our life, we will make similar decisions. I pray that hospice is able to better manage your pain so that you can be comfortable in the time to come. I also hope that there is a way to enjoy the company of your dogs while in hospice - if that is something that you want and I suspect it may be.

SBL

[Laurettas]

Once again your words are inspiring and consoling. Thank you so much for sharing this very personal decision with us. We will support you from afar and hope for peace and freedom from pain in the days ahead.