Linking you to resources and support in the lung cancer community!
Friends, In these last few years I've seen and participated in many discussions from diagnosis to surgery and chemo to recurrence. But I've not seen your thoughts on when 'ENOUGH IS ENOUGH'
After two operations, and three different chemos over these last six years, I found the last chemo to be doing more damage than good. There no longer was talk of a cure. From now on it was 'keep it in check.' So I then faced life on chemo. It turned out to be 'life in bed' as my legs and feet became immoveable. Like being paralzyed. i had always suffered with neuropathy but this time it crept into my hands and it became impossible to type. And walking was no longer something I could do.
After what I think was careful consideration, one day last month when I was to get chemo, I told the oncologist I'd had it. I have no idea when the end might come but I wanted it to be on my terms and I wanted to walk.
Since then I put myself into Hospice and it's been a wonderful experiene. There are now lots of people taking care of me, they all have different missions. And since this time, feeling in my hands has returned and I can walk. Not well. I fall a lot - but i have canes, a walker and a scooter. I cannot tell you how much I appreciate things I took for granted!
But here's my question to you .... would you have done the same thing? Will you? What would go into your thinking? Do you feel this is 'giving up' or just 'going your way' .... I would love to hear your thoughts.
Its a date,I am so looking forward to meeting up with you and GADawg,theres still time to put your name down for LUNGevity's Hope Summit too, you know.I actually have been invited as a guest speaker also.bye for now.
Eric and MEK,
How fun! I'd be honored to be MEK's escort and meet up with a fellow Scot (I have relatives in Jura). MEK will let me know when and where, I'm sure. It's a date-
Ultimatley mekbride, the decision is yours, but that decision MUST come from your heart. Once you have come to terms with which way you are going I think life will no longer have a time line. If you truly decide to stop treatments you should never look back and regret it. To me that would mean the decision wasn't made honestly. Again, no one but you can make this decision. Everyone around you will choose their paths when you choose yours. If my son gets up in the morning and uses the last of the milk in his cereal, I may get up, see there is no milk and make pancakes(this would make my daughter happy). Granted this decision is not as easy as that but what I am getting at is, we all work independently but as a whole.
I was always told to live life as is it was your last day on earth, but that seemed rather selfish to me. So now I live life like the person standing in front of me is living their last day on earth. What a difference that has made in my life.
David, you are so right about the decision making, and I love the idea of the person standing in front of you.
I was at the Cancer Center yesterday as each month I have to have my port flushed. Everyone kept talking about how good I looked, and how alive. After that was finished, my husband and I went scootering for the next four-five hours. We ate lunch out doors, bought some things here and there - and overall just had a great day. In the middle of the day we stopped at a hardware store owned by people we know. I had not seen these people in years so it was quite a reunion. The first thing I thought was how great it was to see them - and how much I had missed seeing people (because chemo draws me into a turtle shell.) The second thing was I overheard their conversation with my husband, talking about how good I looked and they couldn't get over it.
While I believe it's in the genes, I also believe the life in my eyes and body come from being in the real world again, and how delighted I am to have made the decision I did.
You are absolutely correct! Hugs, mek
Hi Mekbride - You so impressed me with your courage and doing what I hope whenever the time comes, be able to do. I had a horrible reaction to chemo back in February and thought then I couldn't do this again but at the moment still have the fight. I like to think that, like you, finally say enough is enough when the benefits are less than the quality of life. Thankfully I have a doctor will not put treatment above quality of my life. I think at some point in the fight you have to listen to your body and intuition and know, as you say, enough is enough. You can't go wrong with hospice care, those people are amazing people, and I believe angels put on Earth for us.
mekbride.... I only started chemo this past February, last week was my 3rd treatment. I am sitting here feeling shaky, queasy, wondering how the contents in my disgestive system will come out, and how difficult the treatment makes something that easy very hard. """After two operations, and three different chemos over these last six years""" i think would have said enough is enough a long time ago. I don't remember having 'difficulties' being exposed to this Small Cell Lung Cancer as it was happening. You are very brave.... and the medical field is meant to 'save' but some times at one point, I too would just put it in God's hands.
Maribeth and Ronnie, Both of you have a long way to go!
I remember attending a function at Lung Cancer Alliance where I met the most amazing people. But even more amazing than their attitudes was the fact that they had been going on for 5-10 years and more! I know that's what my doctors had hoped for me. But oh what a wonderful six years I had. In fact I remember going thru Chemo I and first operation thinking very little. Just feeling. (ugg). But I promised myself some 'treats' if I made it thru - and I did make it thru - and I did learn to swim and I did go snorkeling in Cozumel Mexico Somthing I probably would have never done had it not been for chemo I!!!!
Now I no longer swim, but what wonderful memories I have. And after swimming I went to St Petersburg where I bought these beautiful Russian dolls. We are putting them up on a shelf for the first time, this weekend. My pain has gotten quite worse and they've increased my pain killing meds. I suspect I will be sleeping more. But when I wake up, I will be surrounded by my beautiful Russian dolls.
So I say to both of you - hang in there as you have many many wonderful days ahead. Make the most of them, do what you've always wanted to do as you are in recovery, and surround yourself with beautiful things. (I actually went out and bought an $80 bottle of perfume - something I never would have done before - and I keep wonderful smells around me too!)
Thank you for responding. I feel we have a very special community. Hugs, mek
What an amazing person you are ,an inspiration to all the people on this journey ,you have lived life to the full,in spite of or because of the cancer,it matters not.Now as you reach a different place ,I and I'm sure many others would like to say thank-you for your inspiration and courage, the last few weeks reading your e-mails has filled me with gratitude for life well lived, not only yours, but others who will follow your example to live life to it's fullest in the time they have the ability to do so.God Bless you
Pat, thank you for such lovely words and sentiments. I always found my inspiration from all the people I met along the way. Even the 'icky' ones... and while there were plenty of those, they probably taught me more than the good ones. Now why did I waste all this time putting those Russian dolls up!!?? Hugs, mek
I struggle with this too. But I think there does come a time when "enough is enough" and it's not giving up, it's taking control of your health and body. I would do the same thing you did. And I'm only 45 yrs. old with two young children. I have already decided the if the Tarceva doesn't work, I'm going into Hospice too. I love life and am young, but I also believe "when it's your time, it's your time." I'm so glad you are in Hospice and I hope you can more enjoy the time you have left. One friend told me people live a month or two longer with Hospice as well and it's better quality.
Hi again Mek- You are so brave and courageous to have made this decision. I believe that you have made a decision that shows such dignity such power in dying on your terms. I am sorry that I have never met you in person as I'm sure that my life would have been richer, far richer.
At this time I think that it is is good to have a lot of people with you doing all their various jobs, helping to care for you the way you want. One of my dearest most precious friends made this decision a short few months ago and has recently called in hospice, and all of us who adore and love her seem to have found our niche with her as she is leaving this life as we had when she was living her life. And it is such an honor. And some day I hope that I will be as brave and courageous as you in the decision tha tI make. God bless you!!
Love and hugs,
Meg, thanx for the vote of confidence. It was only January a diagonoses of Stage 3 extensive small cell lung cancer, a tumor focused in the left lung which collapsed many years ago. Old Pnuemonia scars, cloudy xrays, ct scans, (waiting for Pet Scan resuults). COPD, Asthma and Ephazima (spelling). As I am sitting here typing, breathing is difficult. A consant clear mucus is being spit up. This ventolin HFA inhaler is used too much. I want to go see my pulmonary doctor right now (appt 8 days away) and make him explain which is making me feel this way. and I am sure wrapping up 6 sessions of chemo 3 wks ago....... it's hard to breathe.