A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: A New Chapter

Postby J_T » Wed Mar 19, 2014 10:50 pm

Beautifully put nikkis, that's it exactly.

Sarah, be aware that you have helped not only your beloved mum but lots of other people, and some who are unknown to us, who feel they can only read your comprehensive posts and who are not ready or able to share their own stories.

I can well understand your mum perhaps choosing not to continue with treatment and even without it she can continue being well for a long time to come and long may she.

Doesn't matter which forum you post in as long as we get to follow your journey.

Much love to you and your mum. You're a star!

Julia x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Wed Mar 19, 2014 10:56 pm

Thanks for this guys. Such insightful helpful words. Bit numb as I said, but keeping on keeping on as all of us do. Thanks for being there.

Sarah
XXX

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: A New Chapter

Postby RLF » Thu Mar 20, 2014 10:58 am

I'm very sorry to hear about your mum Sarah, I feel a close connection to your story and the drive you have had to explore every avenue of treatment. You have done everything you can and I'm sure you still are, she's lucky to have had you fighting her corner!
Rob x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: A New Chapter

Postby Cathy » Thu Mar 20, 2014 3:50 pm

Hi Sarah

I can't add much to what the others have already written other than expressing of course my utter disappointment for you. I am sure that whatever your Mum decides will be a decision that will be made in the light of all the facts and the amazing amount of information that you have gleaned from research. You haven't just been fighting your Mums corner but everyone's corner who is on this journey.

If you are ever in London and fancy meeting for a coffee, chat, rail against the world, whatever, just let me know

Xxx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: A New Chapter

Postby Slewis7313 » Thu Mar 20, 2014 4:42 pm

Hi Sarah, so sorry to hear the bad news about what is going on with your Mother. It's so typical of this thing that she feels beeter at this time even though the damned thing is actually contradicting the upturn in her general outward well being. She seems to be clear (as far as you can with this) what she will do once she has all the facts. I really hope the thing slows down and that you both can continue to have many good days together. I also agree that you should post wherever you wish as the updates always make a good read and full of such useful information and comments.

Good luck to you both

Steve
x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: A New Chapter

Postby belgrade » Thu Mar 20, 2014 8:49 pm

Hi Sarah,
Just echoing the sentiments already made by others and wishing you and your Mum all the very best in your battle. Enjoy the time you have together and give yourself a good pat on the back for all you have done for your Mum and for many,many others on this site.

Hilary x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Thu Mar 20, 2014 11:14 pm

Again thank you all, and may well take you up on that offer Cathy! Mum is working hard to get some practical things sorted, she, like me, deals by doing.

I've been crazy busy on Twitter today @S_Clarke22 and have updated my blog http://www.infospectives.me , with Mum's permission, to try and prompt more support for Maggie Watt's pancreatic cancer epetition and the Saatchi Bill.

If anyone here hasn't exhausted every one of their contacts to get support for these things, you are welcome to share anything I've posted or tweeted if you think it will eke out a few more signatures.

Going to need you all over the next few months, but will try not to drive you all crazy. By the way, Mum sends her love. She really appreciates the support I get here too.

Lots of love

Sarah
XXX

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: A New Chapter

Postby Bee » Fri Mar 21, 2014 8:54 am

Hi Sarah,

Can only echo what everyone has said, sorry your journey has taken a different direction. I keep an eye on the stories here and am thinking of all of you. Keep going you are doing an amazing job!

Bee xx

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: A New Chapter

Postby Dollysdaughter » Fri Mar 21, 2014 11:23 am

Sarah, you have done so much and tried so hard for your mum and shared it with others too. I guess there comes a time when you just have to relax and try to enjoy what there is. I don't think its giving up,or giving in, its just a different kind of approach and one which I hope will enable you both to stop having to chase and to enjoy the time together.
Very best wishes,

Sara x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: A New Chapter

Postby sandraW » Fri Mar 21, 2014 12:30 pm

Sarah you would never drive us crazy and I am sure all the wonderful people on here will be only too ready to give you all the support you need, just as you have supported others when they have needed it. Just sending cyber ((hugs)) to you and your Mum and all the best wishes in the world sandrax xxx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Thu Mar 27, 2014 11:48 pm

Feeling very lonely and low. Realising that being the only one fit and able to fight Mum's corner without anyone beyond my man as a real life support network is going to perhaps be tougher than I can handle.

Was told by a friend tonight that my priorities should be me, my family, then mum, in that order. Makes perfect sense and I know Mum agrees, but we all know we have to keep our loved ones at the front of doctors/support workers/nurses/GPs minds or they can fall through the gaps.

I'm not reflecting Mum's mood here. She told me she's getting her appetite back, pain is still well controlled and she's planning what to do with money from some things she's selling. Love her and so proud of her, but a bleak self pitying mess this end.

The therapy is the vent, so don't worry about me. Felt like I couldn't say to anyone how I'm feeling cos it would bring folk down. Hope I'm not doing that and love to all in far nastier places.

I'll circle back up again, just hard to see it right this mo.

Sarah

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: A New Chapter

Postby sandraW » Fri Mar 28, 2014 9:03 am

HI Sarah,
Couldn't not reply, everyone is different, and perhaps your friend has never been in a situation like the one you are in. You say your Man supports you so that all right. My mum
lived to be 96 I was so lucky to have her for so long but had to support her for the last 10 years, my man too was more than ok with this, whilst my sister and husband did just a half hour weekly visit, you do what's right for you my love, and vent all you want to. Glad to hear your Mum is feeling upbeat and in less pain take care sandrax

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Fri Mar 28, 2014 11:57 am

Thanks lovely lady. Just had a productive GP visit. Amazing given my opening gambit was "don't even know why I'm here cos I doubt you can help" <<misery guts-tastic. He's suggested a couple of checks to see if I've got a rumbling infection, a chest xray and a couple of weeks off work. He took more time than he should and managed to not patronise me, empathise and be practical all at the same time. More like him please NHS!

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: A New Chapter

Postby nikkis » Fri Mar 28, 2014 12:19 pm

You have every right to feel sorry for yourself Sarah. In some ways having your mum suffering must make things harder than when, as in my case, it is my other half. I don't have to feel split in two, as I am sure you do. Everyone I need to care for is under my roof.
You are doing a great job, glad to hear your doctor was helpful, hopefully the sun will shine again this weekend and you will feel a little better,
Love,
Nikki

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: A New Chapter

Postby Dollysdaughter » Sun Mar 30, 2014 2:47 pm

Sarah, I am in a similar situation to you and, although nobody really knows how anybody else feels, I think I am close! I just can't "switch off" and stop thinking about my mum and what is happening to her and how I can help, not for a minute and it's definately having an effect on my health and well being. Like you, I need to find some way of trying to detach in some way whilst still being supportive and caring. It's hard though isn't it?
Take care,
Sara x