Well, was told yesterday that I am now Platinum resistant and it has spread all over the place. I knew as I am in more pain and little energy. Was offered the Patfoss trial but I am so tired of hospitals and spending what remains of my life in them for what appears to be minimal benefit does not appeal. She said with no treatment I would have 6-12 months. With the 5 weeks in hospital for bowel obstruction and all the Chemo I am just tired of the whole merry go round.
I am not being negative or gloomy just think this is right for me.
Love, Claire xxx
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Meatsy
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I completely understand, Claire. I am thinking along the same lines myself, if I should find myself in the same position. I hope your remaining months are painfree and as happy as possible, and who knows, they might be understimating the length of reasonable quality time you have left.
Hi Claire I don't think you are being negative or gloomy I think you have made the decision that is right for you. I do hope whatever time you have remaining is comfortable. Gentle hug. Kathy. xxx
Forgive me but I can't recall if you've been in a hospice , as I am now? If not try and get referred into one.
I've been here 8 days so far.they've helped by ' tinkering' with my meds, giving me more meds for things I was suffering with but no one else hado really known what to try etc.
I found emotions came out too, and when I cry one of nurses or doctors takes the time to sit and LISTEN! It's been good for both me and my hubby.
I hope to be home in a few days.
I had absolutely NO quality of life at home for a number of weeks and I hope to go back home with quality of life for as long as I can.
I have a local hospice nurse who comes every week to see me and I have access to the hospice whenever I need it which is huge comfort. I am very lucky, they cared for my Dad and Father in law so I know a lot about them.
I am going to get a portable wheelchair so I can go out with everyone whilst I can.
I am in a Hospice, the care is fantastic here. I have been here nearly 2 weeks during which time they have been tweeting my anti- sickness meds and pain relief. I don't know what the next step will be, maybe they'll send me home - that would be nice if pain was kept under control. I hope you are still comfortable.
Pleased to hear that the hospice is giving you help and comfort. I am lucky enough to visit my local Sue Ryder every week at their daycare centre. The staff are wonderful offering advice, support and understanding and I have made some beautiful new friends. I now feel I can face the future knowing that they will be there to lighten the load for me and my family when the time comes. I recommend this type of care for everyone.
I have just returned from my holiday in Sardinia and was living in my NOW mode as you suggested and had a wonderful time. Now I must be strong and see my onc. tomorrow and face the music with possible 4th line treatment.
I am still determined to play in a golf competition on Tuesday - even if is the last one!
My treatment has also been stopped as it stopped working and I cannot have any other because I am not well enough. So it seems as if we are in the same position.
I am currently still on the hospice getting my pain and symptoms under control and hope to be able to go back home soon - for however longer. I have said when my time comes that I would like to come back here.
There should still be a quality of life open to us both even now.
I've written my order of service etc and gone through it with hubby plus some other things still to be done
We may not be able to have treatment but we are palliative and our symptoms will be controlled as long as possible.
Claire I am so sorry but you have been and still are an inspiration to me and everyone else. Hope you enjoy lots more time at home and eventually as peaceful an end as we all desire. Life is for living and then ending I guess as with everything that has ever been alive....maybe quite surreal.....with much love and thanks for all your inspiration! Chris xxxx
Thank you..I'm still going to be here for as long as possible and now that I've managed to eat again ( after 3 weeks of not) it may mean that something else can be tried.
I couldn't drink either again it was no more than a tiny baby sip. but started to be able to actually have a mouthful. What worked for me was a jug of ice chips and a glass with a small amount of orange squash jn (undiluted) - and I'd just top up with ice chips, swirl them around, taste and do again till it tasted diluted enough . The ice chips mean it is always cold.
That's so funny the orange squash and ice chips, exactly what I do!! Have you tried Rocks orange squash it's really tasty? They sell it in all the big supermarkets xxx
The only thing I am dreading is telling my children which I need to do in person, my daughter is only 18 and it will be very hard. I have also told my husband exactly what I want for my funeral, I am calmer when I have organised things,
You have had a hard time of late and I do hope you are now comfortable. Do speak to your team if you are still in pain as this is so unnecessary these days. Quality of life is so very important.
Every lady on this site with OC will have to make a decision that is right for them, my special person has said she's going out on her own terms when the time is right. All we can hope is no matter how any of us meet our end it is as painless and as comfortable as possible.
We are all here for you for as long as you need us and I wish you all the best for the next stage of your teal journey xxx
You are all so brave and honest....and particularly a credit to this site. God Bless to you and everyone who has gone before...with so much love. Chris xxx
I understand how tiring the medical merry-go-round feels and at some point you need to get off. Quality of life is so important and I wish you all the best for the coming months, may they be a peaceful and enjoyable as possible. The wheelchair sounds a great idea - anything that will get you out and mobile will lift the spirits I'm sure.
Hello. Thanks for sharing this decision, Claire. I am also platinum resistant and have not responded to several kinds of chemo so I've stopped. The consultant referred me to the palliative care team and I have met some of them and a district nurse. I have a 24 hour number to ring the district nurses if I need them. I've been with my partner for a hospice open day and she found it very reassuring. The staff are all very caring and I have had my hand held by 4 health carers in the last week.
I'm wondering if mum is platinum resistant. I've never fully understood it. She had Carbo/Taxel the first time round either side of debulking. She had a recurrence six months later and had Caelyx then 18 months of stability but then CA125 started to rise again. On Friday she has 6 of 6 Carbo/Taxel but I'm dreading it all flaring up quite quickly. The chemo has really made her ill and I don't know if she'd go through it again. Her CA125 has gone right down to 11. She was 80 in October so getting on a bit too! Sending hugs to everyone. Jane X
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End of treatment !
almost to the finish line I hope
Successful first line treatment
2nd line treatment 
Recovery time after Successful first line treatment, hooray!
