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bri's progress


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Oh Deb it must be so hard, I can't imagine. Sounds like you are doing the right thing in being kind to yourself. Day by day is all we can do isn't it?

Look after yourself, thinking of you.

Kate

x

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  • laura

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  • rachelqt

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  • DRAD3

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  • PCUK Nurse Jeni

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PCUK Nurse Dianne

Hi Deb,


I wanted to say we are thinking of you today, and realise this is still such a difficult time for you and the family. I am sure it does not matter if it is 1 month, 1 year or 5 years down the track, the intense emotions still persist. On behalf of Jeni and I we are so pleased to have you as a great member of our 'forum family' and you have bought a lot of support and hope to others, so thank you for making this time for everyone else when you are still grieving yourself.


Take care of yourself and hopefully you will be able to enjoy that May day holiday.


Best wishes,


Dianne & Jeni,

Support Team

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It must be incredibly hard and I can only reiterate what the others said. Be kind to yourself. Your Cornwall trip sounds very special.


It's at times like this you understand the value of family. I was struck, on our first appointment with the onc, people coming and going for their chemotherapy and two older ladies, each on their own, waiting for an ambulance to take them home and I hoped and prayed there would be someone at home waiting for them.


Julia x

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Hi Deb


I am only a recent poster on this forum but have seen some of your messages of support for others and moved by what you have gone through yourself at losing your partner so young.


Your are clearly a brave and strong person and I hope your visit to Cornwall is really special and goes fabulously.


Cathy xx

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Thank you everyone for your kind words. I have got such a lot from supporting others - feeling helpful after feeling so utterly helpless. I am sure others feel the same. The forum family is such a special thing - I know it really does make a massive difference to people going through the most difficult of times. Keep going everyone.

lots of love

Deb

xx

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Hi Deb,

I'm not a regular poster but I have read all your posts since Bob's diagnosis last November and have always been struck by your kind wise words. I have wondered where you were over the past week and now understand why. You are a very special lady Deb and I wish you well for your forthcoming trip. Take care xxx

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  • 3 weeks later...

hi everyone, deb so lovely to hear from you, thanks, so understand how you feel sometimes about just not being able to post, my reasons obviously so differant to yours, mine are visions of my son at the end, so very difficult to erase those darned images.

on a lighter note, and apologies to others on here having such a difficult time, we saw onc on thursday and they dont want to see bri for six months now, so good news for us, hes keeping real good, still gets tired, but does seem to be improvinng, we had a\ week in turkey, came back 3rd may, he coped better than me with the walking etc?? i seem to be falling apart at the seams and inbetween, lol two weeks b4 we went he had numb leg, still has, and has got drop foot!!! 1 wk b4 he had a t.i.a !!!! the things he does to get more attention. anyway hosp visits, mri, stroke nurse apps etc etc, had very good attention, and all seems fine, thank goodness.

deb have not had my comp working since b4 hols, wished i had known you were visiting our neck of the woods, might have been able to have a coffee,? perhaps its not what you could have coped with, and do so hope it was all you wanted it to be xxx will really try and get back to trying to help others if i can, still feel a bit uncomfortable, when so many are having such devastating news.

however my love to you all, old friends and new posters. anyone heard from morwenna??

much love debs, laura xxxxx

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Hi Laura


Wow!! 6 months!! I can't wait to tell Jonathan. I read some of your earliest posts and you said that some of the scans showed stability and not reduction - Jonathan's first showed stability and we hope for reduction in future. He would be so boosted to know that the chemo has been so successful for Bri.


Hope Turkey was lovely.


Lots of love


Cathy xx

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PCUK Nurse Dianne

Hi Laura,


That is great news, and as difficult as it may be sometimes sharing this news with others, thank you for doing so. It is always important to hear the 'good news stories' too as this is what gives inspiration to others. So well done both of you, and take care of yourselves and continue to share with your forum family.


Best wishes,


Dianne


Support Team

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Hi Laura

How wonderful! Do not feel bad for sharing your good news, as Dianne said, this is SO important and gives everyone needing hope a good lift.

So glad you enjoyed your holiday and I do hope you are coping OK with the thoughts that still go round your head about your son. Don't torture yourself - some things will never make any sense - you just have to accept it and make some sort of peace with it. Easier said than done, I know!

I have come out the other side of a surreal few weeks - preparing for the anniversary of Gary's death and taking his ashes to be scattered. I am so glad I took my time in deciding what to do because in the end I felt it was so right.

My daughter and I stayed in a lovely guest house with amazing sea views - one where Gary and I went many times. Scattering his ashes felt like the final acceptance that he was no longer with us physically but a couple of amazing things happened which were quite magical and confirmed my belief that he is with us in spirit.

I am in love with Cornwall and go regularly so perhaps on my next trip, I will ask the support team to give me your email address and we can see if a meet up is possible?

Take care, Laura - love to Bri and long may he continue to defy the odds and keep you and your forum family smiling.

Love to everyone.

Deb

x

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deb, thanks for your post, lovely to hear from you :D , so good you were pleased with your visit to cornwall, and great your daughter was with you, and you had some nice "experiences". we have to take whatever comfort is offered, dont we?.

of course i would be delighted to meet up with you, on a future visit, if you too would like to?,

i can relate [in a different way] to your odd few weeks, i feel a bit in limbo myself. n really should be junping through hoops [ metaphorically speaking these days lol] but i seem full of aches/pains,nauseous feelings, hot n cold,, no im not pregnant!!!

might just go and see the dr, cos its dragging me down and i dont know whats wrong.

however, again thanks for your post, take care of yourself and chat soon love laura xxxx


to all other friends and postees my thoughts and good wishes and lots of strength are with you on your journeys xxxxxx

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Let us know how you get on, Laura, won't you? Don't like to hear that you are not feeling well. Def a good idea to get checked out, especially if it is making you feel down mentally - we all know how important it is to remain psychologically strong and positive. xx

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  • 6 months later...

hi all, we went for our oncology appointment last week, and they are really pleased with how brian is, his weight is maintained [ still using lots of creon!]. our consultant doesnt want too see us for 6 months, have stopped scanning regularly now, they are going more by how bri looks and feels, we were assured that if we had any concerns at all we only have to ring and they will arrange an appointment and scan, so as usual cannot ask for better treatment.


i cannot believe that we are nearly 4 years since diagnosis, how lucky is that?


please all of you, dont give up hope, stay positive and focused and fool this damned disease.


my love and best wishes to all on here, to those who are carrying this uninvited passenger, and to, those that care and support, such a hard job, but such an important role, hi also to anyone who remembers us??


love and hugs laura xxx

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Hi Laura


Not seen any of your thread previously as your last post was before I joined the forum. It is so good to hear some uplifting news when we are so often just hearing tales of woe. Well done Brian and long may you continue to beat the system and keep all our spirits up.


Love and Peace


Mike

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Laura so nice to hear that Brian is still doing so well, Its been over a year now

since my mother in law died from this awful disease and I still pop on this forum

to see how everyone is doing. I cannot forget the help and advise you gave to me

and I am really pleased that you are doing so well, such positive news, the last few months have been so sad on this forum and my heart goes out to the families who have lost their loved ones


love and best wishes

Cheryl

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PCUK Nurse Jeni

Laura,


Thanks for posting this great news! So pleased for you and Bri in particular, of course!


Its so good of you to pop in now and again - hope you are both well.


Great news about the appointments and scans - I am sure that you are as good a judge as any as to when Bri is not at his best, and great that you have open access. Nice to hear a good story - thank you Laura.


Jeni.

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Hello Laura!

Hope your well! Wow, Bri is doing amazing, delighted for you both! As I have said before Bri's journey gave my dad and family hope! Great to hear the good stories out there!

Lovely to hear from you!

Rachel x

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Hi Laura, like Mike I joined well after you started posting so was delighted to see such fabulous news 4 years down the road from diagnosis.


I'm going off in search of your earliest posts to share some stuff with my Mum. I post on her behalf (diagnosed borderline resectable LAPC in head of pancreas in early August), but what I pass on, especially the great day to day experience shared and the wonderful good news, makes a massive difference.


You sound like a lovely lady and your man sounds like an absolute hero. Long may the good stuff continue!


Sarah

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Great to hear Bri is doing well Laura - long may it continue.


My dad was diagnosed with inoperable PC in May 2011 and has continued to have GEMCAP since then. His markers were 5,000 when he was first diagnosed and have reduced significantly to below 20 and my family and I hope for it to continue and my dad to stay strong.


I have read this site many times and I do appreciate my dad is one of the "luckier" ones.


This forum is amazingly supportive to new and old forum friends. I haven't really posted on here myself; if I'm honest I haven't known what to say. I am known for talking lots, but I'm not so good at writing and saying what I would like to say.


I hope my dads response to treatment does give hope to others, carers and loved ones.


Take care and keep strong, sending positive thoughts to you all x

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