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.
Thank you Merry. I so agree with citizens who believe FINANCE should be taught in school. Just the basics. But we would all be so far ahead for the future. I'm beginning to think a conversation about 'end of life' wouldn't be a bad idea either. We talk about sex more than end of life ... and I am begining to understand why so many people spend so much to get themselves into the ground. AARP newsletter had an interesting fact this month - they said the number of people who are donating their bodies is way up ... because it is the only option one can select that doesn't cost anything~ Well - perhaps finance and end of life are all tide up, huh? Isn't it amazing how deadly disease brings up all these subjects?
End of Life and whole body donations has been a conversation in my family for many many years. My parents donated, but the talk was had with every child and grand child so all would understand. It wasn't that the cost was free. It was, well, as time goes on you lose touch wth people. Those that once were are no more and my dad, who lived to 84 and left this world by natural causes saw more than his share pass before him. To science, for it to explore... perhaps they can learn more. I have been a registered donor since before my 23 yr old was born. And although the paper work has not been finalizied she too has mde that decision for herself.
Thank you for sharing your story,it is so frank and shows a great deal of maturity and courage that led you to make the decisions you have made.Since my neo-adjuvant chemo and upper right lobectomy nearly three and a half years ago,I have received no further treatments,and enjoy life to the fullest,my only aftermath is shortness of breath climbing stairs and the many hills we have here in Scotland,mind you, I think I had these problems prior to my dx LOL.
As you may have expected,thoughts of my cancer returning are not far from my mind,and I have contemplated the scenario you have described,I honestly cannot say how I may respond,but I do hope I will make such decisions in the manner that you have described.
Eric ... Scotland huh? I'm a Kirkbride. I've never been 'back home' but I must believe I have lots in common with all there.
I had three wonderful years after my first chemo and lobectomy. Oh the things I did. I did everything on my bucket list~ I went to Russia and the Northern Capitals, and I learned how to swim. The swimming then took me to Cozumel Mexico where I snorkled with the fish. Oh I loved it ... and wondered why I ever put it off. My oncologist was optimistic that it wouldn't come back but it did. That's when I had the second operation and they found that some was inoperable. After that I started the new chemo - it was great and allowed me to keep going full throttle. But when the doc took me off after a year, it exploded within me. Lung became bone cancer. And they said there was nothing they could now hope for except to maintain my status. But they couldn't ... chemo really did me in the third time.
But - guess what? I found I'd done the most important things I had wanted to do - and I found that I had made impact on some people who were important to me - and as Amy so eloquently said, there were those who would remember my story. So now that I've made the decisions, I can relax. Lay back and enjoy those bed baths. Scooter all around Washington DC. Have little dinners out back on the patio. (I especially those in which I don't cook, just sit there.)
For you - I hope the best ... but also say Do all those things you've ever wanted to do. Better to do them when you are or think you are well.
PS - We just returned from my first cruise. Scooters are a gift from above. You should have seen all the people walking the decks who would have given anything to have my scooter! What fun!
Thanx Eric! mek
Thanks for your reply,think you should put Scotland on your bucket list,I,d be pleased to show you around.WashingtonDC? hey I arrive there for a week,from the 2nd of May until the 8th,then onto New York for some sight seeing.I am in WashingtonDC for LUNGevity's Hope Summit on the 5th and 6th.If you are up to it,I'd be pleased to share a pint with you,maybe even a Scotch LOL.
Eric, what a fun thought. And I'll be in touch nearer the end of April. My present state of health is tenuous. Each day decisions made regarding getting up and any activity. But most of all, I'm a FALL RISK - they are very afraid of me falling - and I have many times (and twice off my scooter!) but I keep this to myself! What it means is, I'm always accompanied so it's not just me but someone else has to free themselves up. If later it looks possible, I'll let you know.
Thank you for the invite and thank you for attending the Summit! mek
I think it is reasonable at some point to stop treatment that isn't helping, and switch to palliative care and hospice. In a sense, it is merely to accept that life ends, which we all know anyway. I hope that you find peace along the road you have taken, and have still let yourself be receptive to miracles.
First, I was just a support person for my sister so I am not in your shoes. I think "enough is enough" when you say it is. It sounds like you are much happier/feel better and you are doing things which is wonderful for you! It sounds like you are right where you need to be. My thought process gets tangled with my heart! My brain fully believes God has chosen our last day long ago & on that day we will be no more. My heart will fight with all I have to try to keep somebody alive and here with me though. Very complicated to deal with. You have found what you needed & it seems to be working great so enjoy it to the fullest!!!
Hi mek and Eric,
I'm in DC, too, so MEK if you need someone to accompany you to get that pint, just let me know!
I would love to meet up with you and Mek,I am so looking forward to my visit and meeting up with some friendly natives,bye for now.
Wow! Great! I live in the Dupont Circle/U Street Corridor. As it gets closer let me know a good date and I'll arrange my schedule (Hospice aides and nurses come weekly). Then GADawg & I can finalize arrangements. What fun this will be! mek