topic Re: When is Enough / Enough in Facing end of life

When is Enough / Enough

PeterK — Tue, 29 Dec 2020 16:04:51 GMT

This is my 3rd time fighting Esophageal cancer,since 2012 I’m 62 19 old son 22 old daughter loving wife this time “it” came back with a vengeance and has spread back to esophagus as well as to right kidney, left upper lung, groin, spine C4/5 and L11/12 and abdomen and ribs 4/5 I’m about to start my 4th and last round of FLOT chemo, however it’s bashing me around pain is managed well but the side effects of intense fatigue is sapping my strength.

I asked my oncologist at the start of my 2nd round of FLOT if I stopped chemo how long do you think I would have and he said perhaps 2 months.All my affairs are in order will and cremation and service and the like. BUT I have never been a quitter and have always fought hard and often put on a brave face for family and friends.

I realise 2? Months is not a lot of time but currently I have little to no enjoyment of life at all. Still many things I want to do but also realise my time could be short and I don’t often have the strength to do much at times

. I feel if I said enough is enough I would be depriving family and friends out of time together but they also deeply realise what I’m going through.

It’s hard to know what to do, do I fight till the end or do I say let’s enjoy the time I have left however short.

To those of you who are fighting what would your answer be to this end of life ??

To those of you who have lost a loved one who said quality over quantity one how did you reach your decision??

Thanks In Advance

xox Peter xoxo

Re: When is Enough / Enough

Lampwork54 — Tue, 29 Dec 2020 21:58:50 GMT

Hi Peter, I'm really sorry that you are in this situation. You asked how did we reach that decision in regards to quality over quantity. I think it's a really personal decision. I know I would take quality over quantity because it is an important differentiation. The only example I can give you is the one about my mother. She had a massive stroke that paralysed her left side. In the first nursing home it was a complete nightmare. She had 8 falls out of bed with horrendous injuries as she could not break her fall. The staff could not keep a drink accessible to her and changed the water jug every day without anyone realising that no water had been used from it. The food was disgusting. The care was hostile. Her buzzer would be tied up and out of her reach every morning when I came in. She would be distressed and very thirsty. One morning she had no voice and told me in whispers that she had fallen out of bed and had laid there until the morning staff arrived. She called out for help all night. I didn't believe her because I thought such a thing was impossible. My mother was hallucinating because she wasn overdosed on a Norspan patch of 20mg. Fevers, nightmares and really vivid hallucinations of flies and spiders crawling over her bed and over the ceiling. So many times and so many stories. Its was a terrible saga. I learned something important. There is nothing worse than seeing a parent in pain and you are unable to ease that pain. It took us almost 2 years to move her to another nursing home amidst threats and blackmail from the nursing home. There were many times I wanted her to die as I would have given up and died as quickly as possible. She fought on every day. The new nursing home was heavenly and she had 8 good years slowly deteriorating towards the end of her life. Those 10 years put an incredible strain on me. Enormous stress and financially took its toll with legal fees. Personally, I would have wanted to be euthanised on day one after the stroke but my mother always wanted to live. She never wanted to leave us and I understand that completely and I would never have made a decision against her wishes.

On the good side we had wonderful times and lots of laughter. My mother told us many stories about her young life that we didn't know. We loved her and wanted her to live always. It was a very slow and long goodbye and when she died there were not many tears as I'd cried them over 10 years. I was glad she was free of her earthly body and the pain it gave her.

One thing that helped was I had a gold heart on a long chain that was really expensive but sometimes I would leave it with my mum and tell her that I left my heart with her. She would give it back to me the next time I visited and tell me to take her heart with me. I put that necklace on every day and take my mother into the world with me. Always with me. It gave me great comfort. I have two daughters so I could not leave just one of them that heart so I bought another one to always wear. I love knowing that one day my girls will carry me with them into the world too, every day and think of me. I will remember my mother through my children and grandchildren because they all share her DNA.

Everyone is different and we will make our own choices about our lives. Traditions also help. For 10 years my children and their children would o the nursing home every Christmas Eve (in the morning) and sing for my mother. We would all go out to lunch together afterwards at the same place on the way home. After my mother died, we still go there each year (not this Covid year) as my children wanted to maintain that tradition in honour of my mum.

Sorry for long post. Traditions and memories are important ways to heal from loss so perhaps set up your family to help them deal with this in the future. Fight if you can but know the limitations of your body. You will know when to stop fighting or to fight to your last breath. Only you will know when the time is right. In the meantime, fight to leave your family with the best memories of you. Tell them your stories and your memories of them as babies and children. Play them your songs. My mother and I would Walts in her blue princess chair to a song she loved. It was German but translated to "I dance with you into heaven". We played it as the first song at her funeral and many others that meant a great deal to her. Every small thing makes the loss a little easier for those left behind and that's important. It's a massive loss to lose a mother or a father and the world is a different place without them.

I wish you strength to get through what lays ahead but the last thing to give up would be hope. We fight with hope every day that the next day will be better or the news will be better. It's all we have so don't let go of it. Good luck.

Re: When is Enough / Enough

PeterK — Sat, 09 Jan 2021 12:04:19 GMT

To Lampwork 54

Thank you for your kind reply and for your thoughts and experiences much appreciated.

I have just finished my last round of FLOT treatment however I asked if the dosage could be reduced from 100 % to 75 % which has made a big difference currently in fatigue management and have returned home from Perth, always so nice to get back home in the same surroundings.

Next plan is to plan a return trip to Perth in 2/3 weeks to have a another PET scan to see the outcome/ results, I’ll then make informed decisions based on the most up to date info.

In my heart I’m not ready to “give up” to “it” and toss in the towel, as there is still much I need and want to do.

To spend valued time with family and friends and still work to provide and live each day as best as I can is/ are still my goals at the moment.

So I’m up and kicking again, “Thank You” again for sharing a part of your journey with me, as the many people who are going through same or similar experiences themselves or on a loved ones reflection are also very heart warming, inspiring and uplifting.

Rich Blessings Peter 🌺🌺🌺

Re: When is Enough / Enough

PeterK — Wed, 03 Feb 2021 05:31:40 GMT

Latest Update from recent PET Scan
Well the latest results came back as some static and some reduction in cancer locations after 4 rounds of FLOT
However I was surprised that two previous areas of cancer had increased in size obviously this sucker is determined to give its best but then again so am I.
Currently the concern is 2 x new cancers identified in the spinal canal at T9 & T11 and have been put on anti inflammatory pills and steroids for the first time in months with one dose this morning having a marked improvement in lower back pain for the first time, I’m so relieved.
Next step is down to Perth for radiation therapy to hopefully knock these new invaders on the head and improve my quality of life.
My palative cair nurse has been amazing and I could not have reached out at a more important time, and living remotely 1600ks away from my specialists and treatment locations her input had been invaluable.
So my plan moving forward is to attack back and fight like hell, continue to pray for strength and wisdom set new goals and then kick them over, this kids not done yet. ❗️❗️❗️

Re: When is Enough / Enough

Lampwork54 — Wed, 24 Feb 2021 06:02:17 GMT

Thank you. You sound wonderful and I am so glad you have found a way to fight and you have found support around you. It can be a terrifying and lonely journey. I can't tell you how happy I am by your post. Thank you and best wishes to you. Please keep me up to date on how you are doing.

Re: When is Enough / Enough

PeterK — Wed, 24 Feb 2021 12:32:14 GMT

Hi Lampwork54
Thank you so much for our encouraging reply. Caught up with Dr in Perth who specialises in pain management, best thing since sliced bread.
Anyway have been prescribed some new short and long release pain medication so was just surviving on 2/3 hrs sleep 3/4 nights a week to around currently 6hrs
PTL. So I’m stoked with this improvement & staying strong, positive and motivated.
“Thank You Again” Regards Peter 🙏🏽❤️🙏🏽❤️🙏🏽❤️

Re: When is Enough / Enough

Zazzy101 — Wed, 24 Feb 2021 22:10:35 GMT

Hello Peter,

Glad to hear you are staying strong and positive, hard as this may be some days. My dad had Oesophageal Cancer and I know how horrendous the treatment regime is, let alone the associated fatigue.

I do hope you are finding some pleasure time among the mayhem. I remember my brother being surprised that dad wasn't out there doing bungee jumping once he was given his prognosis 😯. He was happy to watch the grand prix, read and potter around. He carried on as normal. It was also a wonderful opportunity for us all to spend time with him and express what we meant to each other. No regrets.

Warm Regards

Zazzy

Re: When is Enough / Enough

PeterK — Thu, 25 Feb 2021 09:55:26 GMT

Hi Zazzy101
“Thank You” for your encouraging and meaningful comments, yes it’s so important to take time out each and every day to smell the roses, not take things for granted, and see the beauty in every day. A saying I have is every day starts with a beautiful sunrise and ends in a beautiful sunset but it’s what we do between these times that makes a difference.
Rich Blessings & Prayers to You & Yours in your journey.
Kind Regards Peter 🌺🌺🌺

Re: When is Enough / Enough

Dee58 — Sat, 27 Feb 2021 08:27:51 GMT

I have head and neck cancer.... but five years ago I also lost my husband and soulmate to cancer... when it came back a second time he wa so sick and the treatment was giving him no quality of life... he was not living, he was existing.... I told him if he wanted to go, he had my blessing... if he was my pet there is no way I would put him through that... there is no way I’d let my dog suffer like that let alone my soulmate... so he went off treatment and on to very strong drugs to the inevitable end. It broke my heart and it feels just like yesterday still... but I don’t regret giving him the freedom to say enough is enough and let him go. Xxx

Re: When is Enough / Enough

wwroam — Tue, 09 Mar 2021 06:12:19 GMT

Hello Peter
The simplest answer is that if you need to ask the question, then you are not yet at that point.
My background.
2007..Stage 3A Colon Cancer
2015..My partner diagnosed Stage 4 Colon Cancer ( very late stage). As it turned out we ended up with the same Oncologist.
By 2017 I was still seeing him every 6 months and he was using our meetings to occasionally discuss my partner. By this time she had endured 41 rounds of chemotherapy . 21 of Folfox 6 + Avastin and 20 of Folfiri + Erbitux. Her CEA was rising rapidly , the end was coming and she had sold property and financed a house for her daughter. The Onc. carefully broached the subject of ceasing treatment. My reply was that I would have run up the white flag 12 months earlier, and I wouldn't hesitate. Chrissie received this advice with relief and passed away 7 weeks later.
Unfortunately three weeks later again I was diagnosed with Stage 3 NSCLC. That was close to 4 years ago. After initial treatment I had 15 months of remission but my recurrence was classified as Class 4. Current chemo ( immunotherapy didn't work) is keeping the cancer under control ( nodules and lymph nodes). My quality of life is good but I am a realist and would have no hesitation in ceasing treatment.

Re: When is Enough / Enough

PeterK — Sun, 11 Apr 2021 09:23:03 GMT

Hi Lampwork54
Just a quick update, I’m 14 weeks post chemo had FLOT & 10 weeks post radiation therapy to 1 spot on spine, latest CT/PET scan (last week) came back “it” has materesised to numerous other locations as well as lymph nodes inclusive of 3 extra spots on the spine.
Down to Perth next week for mapping prior to 11 rounds of radiation therapy in late April/May.
Oncologist has recommended radiation only to spine to help reduce possible further impact on mobility, however considering advancement of “it” in 14 weeks and drs comment “looking for quality over quantity” this scared the HELL outa me.
Yes I’m still fighting but I’m very much aware that the odds don’t look to be that good.
Wishing you all the very best in your journey & I “Thank You” for your your kind thoughts & wishes.
Rich Blessings 🌺🌺 Peter 🌺🌺

Re: When is Enough / Enough

DarthPeppy — Sat, 17 Apr 2021 21:54:44 GMT

Hi Peter,

Whatever happens, this life here on this ball of rock is not the end; please believe me when I say that there is MORE after this... I'm not a new-age hippy, I used to think that when we die, we just turn to blackness, but several years ago, when my sister committed suicide, certain things happened that shocked my beliefs and changed my mind.

I don't know how long I've got, I guess nobody does, having a terminal illness just makes things all the more horrible. But I believe there is more than this...

Re: When is Enough / Enough

PeterK — Sun, 18 Apr 2021 04:10:42 GMT

Hi Darth Peppy
“Thank You” for your comments, much appreciated, yes I’m a believer that life or at least the spirit lives on after death.
Sorry to hear of your loss as my thoughts and best wishes are with you.
🌺🌺🌺

Re: When is Enough / Enough

KaceJax — Wed, 28 Apr 2021 00:01:16 GMT

Everything will be okay, just believe in your heart. Struggles are real, but it's our option to make ways to be happy. Always find happiness in little things. I, myself, am finding self-fulfillment in just brewing coffee for my partner. How I wish I can do this for long until our hair turned to gray.

Re: When is Enough / Enough

PeterK — Wed, 28 Apr 2021 03:04:24 GMT

Hi KaceJax
“Thank You” for taking the time to reply to my post, much appreciated.
I just love coffee & mixing various beans together and creating some interesting flavours also some not so good ones as well but still it’s a learning experience.
I have listened to my heart and have talked to my family about my wishes, thoughts, desires and yes fears as well.
So I’m going with “quality over quantity”
and I’m content & comfortable with my decision.
Wishing U & yours all the very best for the future. Kind Regards 👍 Peter 👍

Re: When is Enough / Enough

kj — Wed, 28 Apr 2021 04:57:23 GMT

Hi Peter

Quality of life over quantity is definitely a hard decision,you have chosen quality,I had a friend in the same situation ,she also chose quality,unfortunately the mind and body reach a certain point where a person chooses what is best for them,you definitely are not a quitter,and are comfortable with your decision I wish you well, and hope that I have enough strength,courage and wisdom to make the best choice for myself as you have done if I was in a similar situation.

Re: When is Enough / Enough

ActuariesDiseas — Fri, 30 Apr 2021 23:17:18 GMT

Hi @kj

Why did you say that you don't have enough strength, courage and wisdom to make the best choice for yourself? What bothers you?

Re: When is Enough / Enough

PeterK — Sat, 01 May 2021 12:11:49 GMT

@kj

Hi and “Thank You” for your words of thoughtful reflection as much appreciated.

My last chemo finished 16 weeks ago, while walking with a cane, outwardly I look / feel “normal” .

It’s all the S##T going on inside that I and others cant see that I think has created a false sense of security.

Strength, courage & wisdom & peace (if U want to chuck this world in as well) come with knowledge and I am sure your choices will come from these as well.

May your journey be a good one and I wish you and yours all the very best for today and the future.

Kind Regards & Best Wishes

👍👍Peter 👍👍

Re: When is Enough / Enough

kj — Sun, 02 May 2021 03:01:53 GMT

Hi Peter

Thanks for your kind words, a person has a limb in a cast the injury is visible,what is unseen, what is going on inside your body and mind that is invisible ,you may let out a groan from a stab of pain or your physical capabilities are diminished ,unfortunately you are living with cancer and you do what your body and mind allow at any given time.

My friend was a Buddhist and she was at peace facing her immortality.I hope you can have the same .

kind regards and also best wishes to you and your family

Re: When is Enough / Enough

sch — Mon, 03 May 2021 01:04:15 GMT

Hi Peter,

I'm sorry to hear about your situation.

For context, I've lost many family members to cancer, had cancer myself and I was involved in a serious auto vehicle accident that took me a lot closer to death than my cancer, and I certainly was not expected to recover from that one either. It was a protracted painful recovery with very little hope of a good outcome.

Before that accident, I was certain that I would choose to die over losing any of my quality of life (I was in my 20's). But in the aftermath of the accident and spending time with people worse off than I was, I learnt I had to change my expectations of what a good recovery was or what I considered quality of life.

I learnt to love and appreciate different aspects of my life, my family and loved ones, and who I was.

Now, I'm not trying to suggest one thing or another to you, just give a slightly different perspective to this.

The line, no doubt, is different for everyone and it's a very complicated subject.

But that line can change given our perspective and expectations.

I wish you well Peter.

-s