Time Frames.......

[CallmeMum]

I was chatting with my special person tonight and we were having just a general chat about when first told you get the X months to X years we were just saying they may as well have a date stamp like you get in a post office and stamp it on your head as sometimes that's what it feels like.... just thought I'd share this random conversation lol 😂 Xxx

[lorraine71-Australia]

Hi Mum , How is your special person?

I know how you feel my family were told I would not see the year out that was over 2 years ago now, It's been hard at time and I'm now at the stage I've been told this is my 4th line treatment and where do I go now. I try to look to the future but most of the time I don't feel like I have one as soon as I stop chemo the beast start up again,( I think I'm in a low place today will have to pick myself up). I'll go and have a piece of chocolate or a block or 2 of chocolate.

Give my best wishes to your special person ...Lorraine 💙💙

[Solange in reply to lorraine71-Australia]

I so sympathise with you, Lorraine. I hope you quickly come back up again. I wish I could send you a sackload of choccies. Sending you these instead 🌷🌺🥀🌻🌼💐🌸 and a big virtual hug.

With love, Solange xx

[lorraine71-Australia in reply to Solange]

Hi Solange, Thank you I will be seeing ny grandchildren to morrow that will cheer me up and I'm sure i will be on a high from all the chocolate,

How are you going i know you have had a hard time but good news that you are handling the treatment hope it keeps improving...cheers Lorraine 💙💙

ps, thank you for the flowers

[Solange in reply to lorraine71-Australia]

Have a happy time with your grandchildren, Lorraine. Hope they make you smile. I'm a bit fed up at the moment as I've had three Carbos now. Went for CT Scan last week and two different nurses tried to get a cannula in for the contrast dye with no luck. They then sent for the IV Team to come and do it. (Didn't know there was such a team. They just put cannulas in all day!!) They had no luck so the fetched an ultrasound machine - and still no luck. Said my veins were " just so tiny". In the end the Radiologist scanned me without the contrast dye but said the result wouldn't be very good. I'm more fed up because my neck was scanned, too, to see if it showed why one of my vocal cords is paralysed. (Mentioned in previous post) I'd hoped to have heard from my Onco and the Throat Consultant by now. Never mind, I see the Onco next Tuesday. Let's hope we'll know more then. We were going to see how things look and decide whether I will have Caelyx with the next three Carbos.

Oh dear, what a tale of woe!! Sorry!! You don't need me moaning. The good thing is, we're having some super, sunny weather.🌞 I love it, as long as I have shade.

Isn't it amazing that you're in the Blue Mountains of Australia and I'm in England and we can communicate so easily?!! Keep smiling, 😊 Solange xx

[lorraine71-Australia in reply to Solange]

HI Solange, Had a lovely day with my grandchildren at the markets down on the river we are in our winter at the moment but yesterday was lovely, we do not have the cold winters you have but cold still.

I fully understand how you feel about the cannulas and just going for a blood test can be daunting. I had a port put in 2 years ago it's great , can you have one?

You are having a hard time so moan as much as you like if it can help, I hope your team can sort this out next Tuesday.

I have just had my 3rd carbo and caelyx and I'm going alright, my 125 started at1300 after 2 treatments it is down to 780 still high, I have 2 more then a ct scan ,it would be nice to just have a break from chemo.

It is amazing I love the fact that I'm corresponding with all the lovely ladies from around the world. Cheers for now Lorraine

💙💙

[CallmeMum in reply to lorraine71-Australia]

Hi Lorraine she's not too bad treatment she's doing ok just a waiting game for the next CA125 and see where we go from there. Hope you're well? Xxx

[Katsmum]

Hi there

I was never given a time frame , just told it was incurable stage 4 but I know it will get me eventually so having as good a time as I can while I can. I guess being told a date must be more difficult as it's a solid thought that's in your mind all the time. Bit like having a 'use by' date! X

[harpist_UK]

I would never want to have a time frame - it would deny me hope. I just edge forward hoping for the best.

[Kim1958 in reply to harpist_UK]

I agree. That is exactly how I feel Harpist.

[Lyndy]

That's interesting..I didn't get a time frame although they must have been thinking about one as I was stage 4 at dx. But I'm very glad I didn't get one ❤️

[Maryblackcat]

I'm glad I wasn't given one either and being stage four again they must have had their own ideas but time frames were never mentioned and I'm glad about that. It's not a question I'd ask and I hope no one ever "gives" me one! x

[capetownval]

I refused to be told my sell by date , and after reading The Cancer Whisperer by Sophie Sabbage , I don't think the medical profession should be negative, because it is easy to give up !

[Solange]

Shortly after I was diagnosed, ten years ago, I read somewhere " If you don't want to know the answer, don't ask the question", in relation to how long they give you. So I've kept to that advice and not asked. 😉 I suppose I thought it would be harder to keep positive and plan things if I had a date stamp on my head. I guess I would now be well past my " best before" date, lol. Have to admit I thought the end was nigh when I was sent a copy of a letter to my GP advising "Palliative care" needed, some years back, and also each time more Chemo or Radio Therapy needed. I have been so, so lucky.

Wishing you all long, happy lives after your Best Before dates, 😊 Xx

[Di16]

I asked for a "guesstimate" last year, and the onc said she didn't know how long I had, so couldn't give me one. Di

[LittleSan]

I was weighing up the pros and cons of the Desktop trial 3 and conventional treatment for a recurrence. I asked for comparison figures on progression free times and overall survival rates. The consultant gave me some figures but then told me that that was for 'most ladies' and I was an individual. However the 'most ladies' figure stuck with me and haunted me. I am now approaching my 'sell by date' and am symptom free (still on Avastin and have a CT on Monday tho). I wished I hadn't asked for the figures as the consultant was right - I'm not 'most ladies' and I spent time worrying unnecessarily as hopefully I am one of the very fortunate ones who have done better than expected .

Much love and good health to all.

Sandra xx

[Hidden]

I've known several people who have told their oncologist they don't want to know any time frames at the moment- you can always change your mind at any stage but it is difficult to undo the information about how long you've got once you've been told. Just remember everyone is an individual and nobody can know for sure what is going to happen.

All the best

orangery

[Chieftart]

Hi ladies, don't often post but I follow your comments with interest, this is such a supportive site with everyone having each other's back.

Just wanted to add that I didn't ask for my sell by date but it was given to me by my onc once I told her I didn't want to continue with conventional treatment but had decided to follow a holistic route. She gave me 'a few months' which I'm very pleased to say has now passed!

As everyone I'm sure agrees we are all individuals and that prognosis can bring on terribly negative thoughts unnecessarily. It's only an opinion after all, and by the sound of it most of us are sticking our fingers up at it! Keep proving them wrong!! 💪

[SCWI]

Hi Chieftart

Well done you defying their expectations. Just wondering what you are doing on your holistic route as I am trying to do both medical and holistic to stave off more chemo. Xxx

[Chieftart in reply to SCWI]

Well, quite a lot of things. I have met an amazing integrative/holistic doctor based in Bath who was a conventional Doctor for 25 years. She was recommended to me by a lady who refused all conventional treatment for her oc and is now 16 years on from diagnosis!

She is guiding me through different treatments - artemisinin which has shown good results, boswellia (frankincense) again good for oc and I'm just about to start a course of Ayurvedic herbs specially grown in India (which the lady mentioned above took). I've also had a course of intravenous vitamin c treatment.(not cheap!!)

I try to keep an alkaline diet also but I do waver off this at times....

It's tricky I won't deny it as there is no true path to recovery and certain things work for some and not others, but visualisation and meditation really help too in my belief that my body has the ability to heal itself.

Hope that helps!

Debs x

[ZenaJ]

Hi mum,

I remember when I told my daughter, she said she wanted to bring her wedding forward in case I didn't get to see it. I insisted she shouldn't rush things just because of me and I have since seen her married and I also now have a 6 month old grandson. I wouldn't take too much notice of any time scale, they don't really know.

Best wishes,

Living the life. Zena x

[chrissapam]

Haven't been told as such....but can echo your sentiments!...Chris

[rppizio]

My Daughter and I were told no promises to see last Christmas 2016. I am still here doing good and feeling better than I did in December. Not only that but I think all of us really get to know our bodies after recovering from treatment with OC to know if things were going south.. so I don't worry about it like I did last year... as much, lol.

[coalole]

I would like to know when I have less than 12 months, especially if it is going to happen soon as it would make it easier to access my private pensions but the Onc wouldn't say when I was in last.

I do feel as if my expected survival date has shortened with the return to chemo as soon as the bevacismab had stopped but I take comfort from those of you who are on their fourth set of chemo and from the fact that the published overall survival rates are so out of date.

Also remember that every day I survive is another day when a permanent cure might be found.

Diane

[CallmeMum]

Hi lovelies thanks for all your amazing responses it's interesting to know people have had different experiences xxx