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Slapped with a time frame, and I'm shook

Started by Blynne76

26 Jun 2022, 6:58 AM

Hi there,
Im a second round cancer warrior, first diagnosed in 2013 with stage 2b cervical cancer with spread to the walls as well as the cervix. I underwent 25 radiation, 5 chemo including cisplatin and 3 rounds of brachytherapy. I was declared NED (no evidence of disease) that year and just celebrated 8 years clear last June 2021.
August of last year I finally got a CT scan for a very persistent cough and chest pains when xrays showed nothing, only to show a mass 3x5x8 cm in my right chest wall, involving my 4th rib. Further testing would identify it was also involving the lung lining, multiple nodes in both lungs and several lymph nodes behind my sternum...
Initial prognosis was less than 12 months without treatment.
Agressive treatment began with palliative cray for pain relief which worked amazingly well. 6 rounds of chemo, I reacted to 5 of them, as well as 5 rounds of immunotherapy with eventually led to an toxic response and pneumonitis in both lungs.
3 months of prednisone and finally gaining ground later, I finally asked doc face to face what kind of mileage I would get from my last CT scan and he said, "Well, we were always hoping for 1-2 years, but nothing is written in stone." This was after telling my my latest CT showed the cancer was mostly stable with the exception of one node showing resistance to treatment. A new term was introduced, "oligoprogressive metastasis."
How do you move forward knowing, or not knowing, just how much time you have left? When do you start downsizing personal junk? When do you start letting go of non essential obligations to focus on your health and personal responsibilities? I have the logistics, an amazing supportive hubby and incredible group of friends, but these are questions I can't ask around them. I can't bear to add pain to their lives prematurely.
Thanks all,
B.

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Reply by Katherine N (Katherine@virtualhospice.ca)

29 Jun 2022, 2:34 AM

Hi B,
The last few years definitely qualify you as a warrior in my eyes! As far as I know I don't have serious illness, but I worked for a number of years in a cancer treatment outpatient clinic.

I think it takes the courage of a warrior to have feet in two worlds - the present and very uncertain future. I wonder if part of knowing what to do and where to focus energy depends on how much energy you have. What does your heart draw you to? Maybe starting with the things that are most important for you to look after yourself - like pictures, letters, memorobilia.... Not necessairly to discard them, but to sort them - memories can be good medicine too. Would a close friend or family member enjoy that memory trip with you? Might be a way to open conversation

I hesitate to give suggestions - but was reminded of Linda, a member who started the thread Serious illness some years ago and will add her thoughts to this message.

Linda wrote, "all those ideas for a legacy - I do envy people's creativity. I have spent the past few months soting thru papers and pictures and stuff, putting stuff into labelled tubs...." and "what I am discovering is that it's important to have something to do. ...I practise trying to keep a sense of balance - I've learned that we choose our misery."

I look forward to hearing your thoughts.

Katherine

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Reply by stoweyoung

30 Jun 2022, 4:02 PM

Hi Blynne 76 my name is stoweyoung and I'm in the similiar situation to you. 2019 I was diagnosed with rare liver bile duct cANCER AND LESS THAN A YEAR TO LIVE. CHEMO OFFERED WOULD PROBABLY KILL ME, NO TREATMENT OPTIONS OTHER THAN PAIN MANAGEMENT. I CHOSE TO GO HOLISTIC AND IT WORKED FOR ME. THEN LAST YEAR I NEEDED CHEMO AND RADIATION AS CANCER GROWING SO WAS THE PAIN. THIS YEAR I NOW HAVE BREATHING PROBLEMS AND I FIGURED IT WAS TIME TO MAKE SOME DECISIONS. MY DAUGHTER AND GRANDSON LIVE ME AND MY HUSBAND WHO HAS ALTZHEIMRERS. SO MY DAUGHTER HAS A HEAVY LOAD AND I DECIDED THAT IF I COULD LIGHTEN THAT A BIT BY MAKING SOME CHOICES SO SHE DOESN'T HAVE TO THEN I WOULD. I ALWAYS LIKE TO BE ORGANIZED ANYWAY AS I USE TO BE AN ACCOUNTANT LOL! SO I THOUGHT THINGS THAT I COULD GET RID OF OR HAVE NOT BEEN USED JUST DO A SPRING CLEANUP SORT OF THING LIKE CLOTHES I DON'T WEAR OR WONT'T EVER AGAIN (NOT SURE WHAT I WAS THINKING WHEN I BOUGHT SOME OF THEM!) BOOKS I LOVE BOOKS SO SERIES I KNEW THE FAMILY WOULD LIKE TO HAVE I KEPT BUT YOU KNOW OLD ROMANCES, REFERENCE BOOKS STUFF LIKE THAT I DONATED AND THE CHARITY APPRECIATE THEM. THEN I SORTED PICTURES AS I HAD WAY TOO MANY OF PEOPLE MY DAUGHTER WILL NEVER KNOW OUT THEY WENT. iT WAS NICE TO GO OVER THE MEMORIES OF TIMES BEFORE AND I REALIZED THAT THERE WERE PERSONAL ITEMS I WOULD LIKE EACH OF MY FAMILY TO HAVE BECAUSE THEY MEANT SOMETHING TO ME.
IT REALLY FELT LIKE I WAS HOUSE CLEANING NOT BEING MORBID BECAUSE TOMORROW I MAY NOT BE HERE. I LIVE EACH DAY THAT I AM BLESSED TO HAVE ANOTHER DAY AND MAKE WHAT MEMORIES I CAN OR JOY I CAN EACH DAY. BAD DAYS I LIE IN BED LOOKING OUT AT MY BIRDS, ANIMALS, TREES ETC AND ITS PEACEFUL AND BEAUTIFUL. I PLAY MUSIC, CHRISTMAS MOVIES, MEDITATE DO ALL THE THINGS I WANT TO DO AND IF ITS NOTHING THAT DAY SO BE IT!. THIS IS MY TIME TO BE GOOD TO ME TO ENJOY EVERY MEMORY WITH MY GRANDSON AND LET GO AND LET GOD. I BELIEVE NONONE CAN TELL ME THE EXPIRY DATE GOD SET OUT FOR ME AND I ALSO BELIEVE MY ATTITUDE GIVES ME GOOD DAYS FULL OF PEACE LOVE AND FUN WHICH SHOULDN'T EVERYONE LIVE LIKE THAT EVERY DAY? KEEPING STRESS TO A MINIMUM MAKES YOU MORE HEALTHY AND I STICK TO MY DIET NO GLUTEN, NO SUGAR, NO ALCOHOL AND NO DAIRY. i JUICE ALL MY FRUITS AND VEGGIES AND FOR ME THIS WORKS GIVES ME ENERGY AND KEEPS ME HEALTHY FOR THE MOST PART. iTS A HECK OF A THING WHEN THAN C WORD COMES ALONG BUT WE ARE HERE TO SUPPORT ONE ANOTHER. HOPE TO HEAR FROM YOU AGAIN AND REMEMBER TO BELIEVE!

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Reply by Katherine N (Katherine@virtualhospice.ca)

02 Aug 2022, 6:20 PM

I was just going through the messages - and wondered how you were both doing.
Kind regards,
Katherine

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