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Newly diagnosed 45 yr old mum of 4


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  • Marieb

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Well I was out and missed the call but I am booked in for another EUS on Monday. This is the same procedure as before so I can only assume they have now reassessed with the senior Team and believe they can see a way to get the biopsy. It's a very quick turn around for the appointment so I am really pleased about that. Fingers crossed it works this time.

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Hi all, great news, they managed to get a biopsy yesterday. So relived!

I will be talking with my Specialst nurse this morning to discuss the next steps and then I am going to try and forget about it all whilst on holiday.

Marie

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Hi Marie, when I was diagnosed in March I was told it was inoperable, just based on a scan and blood tests, and that has turned out to be the case. The final blow was being told that it wasn't suitable for chemo either. They've given me 9 to 15 months and we mean to make the most of it. I've got past all that and try to fill my days and not have too much time to dwell on the pc. It doesn't always work and those are the times I turn to the forum for much needed support and courage. I do hope Marie that you have good news and that chemo will be offered and successful. Keep that fighting spirit to the fore and keep on fighting.

love Lin

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  • 2 weeks later...

Hi all

Back gom my holidays on Monday and had my fist meeting with the Oncologist yesterday.


The good news us that the cancer has not spread any further. He said I have locally advanced PC. They are still saying its inoperable due to the fact that it covers large arteries. They have recommended that I start on a course of chemo ASAP and given me 12 months.Folfirinox is what they are recommending which I have heard a few of you mention.


Hopefully I can start on that in the next week or two. I asked if the chemo would shrink it enough to make it operable in the future and he said they didn't think that would be the case, again due to it affecting these arteries.


Strangely I felt relieved yesterday as this was what they had said from the start and there were no nasty suprises but today it is sinking in and I can't believe that there is nothing they can do to get rid of it.


I have heard some stories on here (particularly about a clinic in Germany) that I want to find out more about as it seemed to suggest that they are more willing to do surgery but I don't know how well my case compares.


My head is buzzing, part of me wants to go lie in a corner and cry and the other (hopefully the stronger part) wants to scream for more understanding about it all and wether there is any hope out there of a better outcome.


I look at my husband and children and it's just so unfair to put them through this, my kids are too young to loose their mum.


Having a bad day...but I will pick myself up.


Marie

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Marie,

I hope you had as a good a holiday as possible under the circumstances.

I can understand exactly how you feel, its all so scary, and of course you are devastated, who wouldn't be, its all so unfair.

Lets hope you do well on the Folfirinox, some people, Steve comes to mind, have done really well.

Thinking of you and sending a big (((hug))) take care love sandrax xx

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Hi Marie

Hope you had a good holiday, despite all that you have happening at the moment.

It sounds as though you have a good medical team behind you and good there's theres a plan in place. I've read positive things about folfirinox (spelling?). You mentioned 'hope for a better outcome' - there's always hope.

Sending you a lot of strength and stay positive. Take one day at a time xxx

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Hi Marie


I have been looking at this site for a while now but felt compelled to write to you. My own mother had PC in 2011 and had a whipples operation then in June 2014 like you has been diagnosed locally advanced PC with it being wrapped around the portal artery and was told that it won't ever be operated on. She was also given 12 months to live. She had folfirinox for 8 months in all having little breaks along the way. It was rough on her but by February this year they said it had shrunk so much they could barely see it! She was then free from treatment for 6 months and built up her strength and had a good quality of life. She had her scans back last week and it has grown slightly and is starting radiotherapy in a fortnight which they said could give her another year. Who knows what the future holds or how long we all have,but I just wanted to let you know I think you are amazing, enjoy your family, sure its going to be a rollercoaster of emotions but make every day count. My very best wishes to you x

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Hi all


Thank you for your responses, they really do mean a lot to me as each time I read them I feel more positive and hopeful.

ZEG74 thank you for your post,it in particular is great to hear and I just read it to my husband and I can see it has lifted his spirits.


I spoke to my Specialist a nurse yesterday who had called to make an appt. to go over what had been said by the Oncologist. I really do feel that I have a good team in both the local and Specialist centres.


She went over everything again and was able to answer the questions I had not thought to ask at the time. Like all of you she said that it was possible that the chemo could shrink the tumour enough for surgery but emphasised that it was unlikely.


I am having a Hickman line fitted next Friday and start Chemo the following Monday ie 3rd August. I am thankful that there is not a big wait and I can get started.


We have had a tough couple of days coming to terms with it all but at the end of the day I still feel the same. The medics talk in averages and statistics, that's all they can offer.


I am not a statistic, I am a fighter! I fully intend to be a statistical outlier.


So today is today and I feel good and positive as I sit here listening to my 6 and 8 year old playing games in an American accent, smiling up at me. One has just given me a big hug as he says my eyes look shiny.


I will fight for them, and I will fight for me....tomorrow is another day!

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Dear Marie, my husband James was given 12-26 weeks, with terminal PC spread to his lungs and adrenal gland 67 weeks and 2 days ago, he is still here. Much older than you, 71 now, but OK. As you say they only ever give averages based on empirical evidence and so can't be right for everyone. James is building a raised decking area, involving lots of lifting and fitting, worked 8 hours yesterday, not today as raining, but fully intends to get back out tomorrow. James' too shrunk in the PC to no longer visible, 19 of the 22 in his lungs no longer visible and gone from his adrenal gland. We know that he still has this evil disease, but hopefully he will stay well for as long as possible.


Your children sound adorable, recognising and articulating 'shiny eyes'. I'm sending you the very, very best wishes. Fiona X

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Hi all

In addition to coming onto this forum to get support, I created a secret Facebookgroup and invited my closest friends and family. The initial idea was to have an easy mechanism for updating them all in the early days of what was happening in relation to tests, diagnosis etc and also to allow us to ask for practical help when needed eg picking up the kids from clubs when I felt to ill to drive. We could all easily and confidentially chat about it all.


This very quickly evolved into a near daily blog which contains a mixture of information, links to good websites etc that I feel may help them understand PC and help them deal with their own feelings and also inspirational quotes etc. I also put on how I am feeling...good or bad. It can be very humorous too as we discuss everything.


Here is one for you......2nd day in to my diagnosis I woke up sore and went downstairs so as not to disturb my other half who had only just got to bed after sitting by himself into the small hours trying to come to terms with it. I was sitting downstairs and rubbed my back where my morphine patch was only to find it missing. I quickly realised it must have come off in bed as I had awoken covered in sweat. I went upstairs and tried to search our shared bed in the pitch black, trying all that time to be as quiet as I could be.


Picture in your minds the next bit...I am under the duvet searching the sheet, my hubby wakes up and switches on the lamp and sleepily says "what the hell are you doing" , he is sitting up and the patch is stuck to his cheek....


It provided a much neede laugh that day and I am sure he was far more chilled after!!!


It is through this forum and my secret FB group that I feel I can reach out for support...I am hoping in doing that that I can also support others too. I certainly find it invaluable.


Marie

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Marie, that did make me laugh! I hope you managed to detach it from his cheek before he was too chilled! We had a similar laugh when I was giving my man a wash in the hospice only to find that a sticker had transferred itself from the chair to his back. It said "I'm clean" and a tick in the box! X

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I like that Didge lol....we have to grasp on to moments of humour even when it's bad humour!


I am thinking of starting a real blog as I find writing about my experiences therapeutic and as time goes on I know I will need distractions.


Take care Didge, I know times are difficult for you just now x


Marie

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Hi Marie that made me smile . We Certainly need a laugh sometimes! Hope you are feeling ok today. Sending you love and strength. Sue x

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Well the big first day of chemo is nearly on me and I feel ok. I had my Hickman Line fitted on Friday in preparation...think I was dreading that more than anything, but that too was much less painful than I had imagined. It all went very smoothly and apart from being uncomfortable was fine.


One of my work friends (my work takes me all over Scotland but mainly Glasgow and Edinburgh) came down to visit me (4 hour round trip) for a couple of hours. It was so lovely to see her and she had brought me a "chemo goody bag" consisting of a hessian shopper bag hand painted with a lady on it (looking very boho in a maxi dress - which is my go to attire at the mo as waiste bands are uncomfortable) and my name. Inside it was a wash bag with "queasies", mags, fluffy socks, knitted slippers, Vaseline, lip balm, hand cream, breath spray, garlic and herb salt and a note to say "get yourself some port and cheese".

Her mum has had cancer and had told her these were her essentials during and after chemo.


It truly amazes and humbles me how kind everyone is being...somewhere along the line I have built up good karma!!


My sister is coming with me for my first session, I am very grateful for the company as I would rather George stayed at home with the kids who are naturally anxious about it all. Fingers crossed it goes well and I tolerate it well.


Whatever...I will fight this tooth and nail...I am not ready to join my dear mum who passed away just over a year ago yet!


Keep up the fight all, and for those of you truly struggling just now, my thoughts are with you, stay strong as best you can my friends x

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Hi all, pleased to say my first cycle has gone well so far...understanding it's early days. Seem to have tolerated it well in the clinic and now at home with my pump attached.

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That's great Marie, Trevor didn't have many side effect too apart from the tiredness, so don't be surprised if in the next few days you feel lethargic and sleepy, take care sandrax

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