I haven't posted for a long time,because I feel that I had nothing positive or any helpful advice to offer. But I usually try to keep up to date with all you lovely, brave ladies postingsI am 81 Years old and 3 years 10 Months into the OC battle having had the big op followed by 3 different lots of Chemo and the tablet form Letrosole ( which did nothing to help) and the Cancer spread everywhere into the peritorium Apparently it is near all the vital organs but not yet in them, I started back on another round of Carboplatin 3 weeks ago, which knocked me for 6. Most often time I have been too exhausted to get dressed,Have fluid on the lung again and in the abdomen. GP prescribed water tablets,which in spite of bad side effects I persevered with for 7 days, I see my ONC this Wednesday and am scheduled for the 2nd chemo on Friday. But, I can't decide whether to s ay Stop, no more,Then of course I and my lovely husband and daughter would have to deal with the inevitable.and I feel too scared to even think about it. So is theRe any one out there who has made that decision and how are you coping with it .You are all such brave ladies warriors is a good name for everyone. I feel a bit selfish asking for help and advice now, when I haven't been able to do the same.
Lots of hugs to you all ,
Gill. XX (known as Gillie80,
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Hi Gill. please dont feel selfish for reaching out for support and advice. thats what we are here for. I cant offer you any with regard to your query but I do want to send you a big virtual hug . Hopefully someone will be able to advise. Kathy xx
Hello Gill, again I can't offer any advice however I wanted to say how much your post has touched my heart. You are a real trooper and you have a big decision to ponder and maybe make if the time is right. Your husband and daughter will be wanting you to carry on Im sure however this decision will be yours.
It takes a lot out of you to keep going on when you're exhausted and seemingly on a 'merry go round' of constant treatment and no improvement. Have you had an honest and open chat with your team? If not can you do so without your hubby and daughter with you? Really discuss your options, progress and even prognosis?
While you can't decide my (humble) advice is for you to carry on with your treatment. Have a real heart to heart with your Oncologist tomorrow even if you have to send your hubby out of the room if he goes with you! Talk quietly to yourself about how you really feel, is it that you feel down at the moment and that feeling may go? Or have you been feeling like this for longer?
I don't know you however I think you are a brave and wonderful lady so please accept a big virtual gentle hug.
Gillie80, I have thought a lot about this question. Cancer treatment aka "the good fight" has brought me to the darkest despair of my life. The side effects, the pain, the multitude of ER visits, the surgery, the complications, the depression, the loss of privacy, the deafness I now have from chemo, the loss of balance from the damage to my ears, the loss of agency when I am too weak to lead the way. While I am currently 3C NED, I am also aware of the probability that this disease may be the end of me. My personal decision is that when my quality of life has become so compromised as to be unbearable, when I can no longer find joy in the simplest of moments, when love isn't enough to make me want to stay, when I am unable to give comfort and solace to my loved ones, when I can no longer tolerate the ravages to my once pretty self, when I have lost the will to be subjected to the western medical "fight", when I just want to go to sleep and never wake up, when these moments collide I will stop treatment and enjoy the time I have left without the encumbrance of a treatment that cannot cure me. I have watched my friends die both during treatment and after discontinuing treatment. They are both DEAD. The result is the same. The one who stopped treatment was actually quite comfortable and in no pain until the very end. The "very end" is the same for us all. We get medication to ease the pain so we can die peacefully. It is a deeply personal decision to make. I respect that we each have different priorities and desires. For my part, at some point, I will quietly know that I am done fighting. Love, Tesla
Tesla this is one of the most beautiful, moving and eloquent short pieces I have encountered on this essential conundrum we on here all have in our lives. I would uphold the spirit of your message and hope it helps you Gillie80. Whatever you do it is your choice and I wish you much peace and happy moments in the coming times.
Hi Gill, I have no personal experience to give you any great insights but as an ex-health care professional I have watched people agonise over the decision to stop treatment. I feel like Tesla, that the right time to make the decision is a very individual one and you will know when you are ready to make it. Arm yourself with all the facts by talking to your team, Macmillian Nurse, Ovacome Nurse and then let your spiritual self take over. It sounds lto me ike you have a love for your life that you're not quite ready to let go of.
Your post really struck a chord with me it's so powerful yet so poignant and gently written .
Hi Lovely Ladies, I'm on this site for someone very special to me who is herself 'fighting the great fight', how I wish there was a cure! Watching from the outside it's like a horror movie that hasn't got a happy ending. Gill I can't tell you what to do, I can't imagine how anything must feel right now however when this special person had her 1st reoccurrence in August I said to her when she feels it's time to say 'stop no more' then we must listen. This is a decision that you have to make, by all means discuss it with your family but make sure they understand how you feel. I have watched several people within the past 10 years who are special to me pass away from various forms of cancer and the only thing that I can guarantee is that they're at peace now. I'm sending you all the virtual hugs and strength you need to make the best decision for you.
My sincere apologies if my post has offended or upset anyone it is not my intention to do so.
I'm sorry to hear that you have reached this point. I can't help as I am mot there yet. I'm on calyx as 4th line and will find out soon whether it is working. It has been the gentlest chemo I have had. The platinum chemos don't work for me now. I may be where you are on a few months so thank you form your thoughtful post. Lx
I feel really humbled by your post and the beautiful eloquent replies you have received.
I don't have any advice to offer,but felt I just had to reach out to you.Most importantly it is your life and your decision,but I would definately have a long conversation with your team and discuss all options open to you before you reach your decision.
Your family love you and want you to be with them as long as possible,but quality of life is important.
We are here for you and don't hesitate to post if you need support,
My wife 70 asked me to respond. She is too weak as she has a deadly and rare OC. Diagnosed in Jan 4 with advanced stage .CA 125 was 1127 Her surgery on Feb 17 was cancelled. 1 hour before at the hospital, her bloodwork showed she had Autoimmune Hemolytic Anemia. Her red blood cell count was 55. Normal is 120 - 160.
They treated it as sn in and outpatient. At a 76 count they gave her the standard dose of Carboplatin/ Taxal infusion. Within 4 days her count was down to 36.
They reduced the dosage treated her with anemia with Prednisone 60 mg
After 3 CHEMO cycles her CA125 was 8. After 6 cycles her cancer came back. Her Red blood count is stable in the 90's. 4 weeka ago they started a Caelyx chemo. 5 mts. Into it she had accute anaphylactic symptoms. Rapid spread of hives tight chest and retrictions in throat. It came back faster the next day at home needing a trip to the ER.
This week CA125 is 385 and Hb 98 The Benadryl 200 mg she took over 3 days 4 weeks ago has rendered her very weak. Her oncologist says this hypersensitivity is extremely rare. If she does not try 3 cycles of Caelyx with pre and post Benadryl her life span could be 6 months.
She feels she would like her quality of life on her feet over a 3 month bed ridden hope for a speculative 20 % add on quantity of life.
Any insights will be appreciated.
BTW the journey stats. These twin conditions of OC and AIHE since Jan includes 15 days in patient care and 50 outpatient visits half in a wheel chair and 45 blood draws. I have had to, since mid Feb, accompany her everywhere, whenever she leaves the condo, all this due to her anemia and med side effects like neuropathy
Hi Gilliue, your not selfish at all. Reading your poist made me thinkno matter how brave and determined we may feel, I think I too would be scared when the time comes to make that decision. I'm sorry I can't be of help but thank you for posting as you have really made me think. Goid bless. Ann xo
To just say thank you to the ladies who responded to my post, doesn't seem enough. I am overwhelmed by the fact, that although struggling with your own cancer demons, you all found the energy to write and give me advise and comfort. Yes, I was in floods of tears reading them, especially yours, Tesla. So beautifully put, yet giving me an insight into your life with cancer. I have never had a cancer team. But 2 week s ago, the local community palliative Macmillan nurse came to see me, a very nice lady, but unfortunately, " at odds " with the medication prescribed by my GP. Your posts made me realise that I haven't yet reached that bottom level of despair. Wanting to " run away from it all " , yes. But walking is an effort,so running, well what a. thought. ,!!! Tomorrow, I have decided to fight my corner with the Onc, for another go with the Chemo, ( she wanted me to give up last year) . I will let you all. know what happens.. Once again, thank you all for your lovely words of wisdom and kindness.
You really are a warrior in every sense of the word.
I too have an appointment tomorrow to hear my scan results to find out if its back or not. I have been feeling awful today but the thing is I feel really good, if that makes sense. I'm really fortunate that I don't have any lasting side effects from my treatment, stiff neck and shoulders when I'm really tired, and I have no symptoms of OC just a raising CA125. Reading your initial post reminded me that I'm not the only one fighting this fight and actually I should be giving thanks for my current position in life.
reading this post has geared me up to fight if I receive news that I don't want tomorrow!
HI Gill I admire you courage and strength, Something within us gives us the urge to fight this horrible illness. Your original post was very honest and also makes us think of our own immortality. I wish you well with your consultation tomorrow and I hope that perhaps ye can come to some kind of agreement even lowering the dose might help you remain as you are and you will be able to put that decision on the back burner for a while. If there is something or someone in life that gives you the incentive to keep on then that helps too, Sending you a huge hug,
Not sure where you live, but I met many folk at the Penny Brohn clinic in Bristol in yr position. One brave young man in his 30's with 3 small kids. One lady from S Africa who was given no hope 7 years ago!
They taught me every living creature, (blades of grass, birds, our family & friends, flowers, trees) are on the same path. At the time, I was bald, just diagnosed stage 3C having lost Mum, my Aunt, cousins all v quickly to ovarian BRCA1 gene defect. They helped so much.
My German friend Ulrika told me in Germany they say, Death is just the big brother to sleep. We all get to meet him/her.
Do go on line & see when they can fit u in. It is free & I made donation.
I live near Eastbourne, so Bristol and the M23 & M25 are not an option for me. But I am registered with the Eastbourne St. Wilfreds Hospice and if or when I start to feel a bit better,I shall make an appointment to have a chat with one of their Counsellors.
Thanks for posting, and for all the responses. Deeply thought-provoking, and especially Tesla's. I have just finished reading Being Mortal by Atul Gawande, a US surgeon. It looks at "illness, medicine and what matters in the end". There are some beautiful stories in this, told from a personal point of view, about how the boundaries of science and medicine have been stretched to provide a "life" which is sometimes not worth the living.
I'm all for quality of life myself, and have postponed starting 2nd line for chemo now since the warning signs in April. My oncologist is behind me on this, but we're both aware it's only a matter of time before symptoms occur and I get on the cycle again. I love being "normal", carrying on with everything including work, for as long as I can. I feel I've been able to buy myself a relatively good summer, and I consider myself lucky in being able to decide to take that route. The chemo days are ahead, but I've had an important breather. We all know when it gets too much to bear.
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