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
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.
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 🌺🌺🌺
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