A forum for family, friends and carers of pancreatic cancer patients

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kate2101
Posts: 86
Joined: Fri Jun 15, 2018 4:20 pm

Re: This cruel disease

Postby kate2101 » Thu Mar 21, 2019 9:16 pm

Dear Keith, So sad to read your post. I really hope Kerry is able to regain her strength over the next few weeks. I know from my own experience Folfirinox is a battle in itself to deal with, the side effects are horrible. Wishing you lots of luck for the next few weeks, Kerry is amazing! Thinking of you x

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Thu Mar 28, 2019 6:11 pm

Thank you to everybody for the kind words and wishes. I read them all and pass them on.

It's 4 weeks since any treatment, and what a transformation. It's incredible and not what we expected. Kerry got her appetite for food and just as importantly, her appetite for being active back within the first week. She went from someone that barely ate to somebody that is eating and eating and eating. She has gained 8lbs in 3 weeks. None of it fluid, all of it just good solid body mass, and some muscle mass from being highly active again.

Despite our profound pain at the news, the pain of seeing her essentially housebound and the antithesis of the usually active person that we know and love, has now gone, which helps somewhat. She has been away for a short holiday, been shopping again several times (which she loves) and just looks like a completely revitalised person in every way. Quality of life does become the primary concern at some point.

So, tissue from the tumour is being sent off for genetic profiling to see if any mutations exist that may open up the possibility of alternative treatments. The search for other trials also goes on. We are looking here and abroad, and so is the hospital that is treating her.

It's six months since Kerry received any effective treatment. She still has no new or major symptoms and is able to eat well and gain body mass through natural nutrition. We have a short family holiday in a couple of weeks and then another planned for early summer. Somewhere warm and sunny with a nice beach and a welcoming pool!

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Tue Apr 02, 2019 10:30 pm

Hi Keith,bi am so pleased to hear that Kerry has regained her strength and is able to be doing so much. It is promising that the disease appears to be stable, long may that last
Good luck with finding an appropriate trial, there seems to be so many of them out there, have you seen the one being undertaken in Liverpool, it's immunotherapy (think that's spelt right) by a professor Daniel Palmer. Best wishes. Theresa

PCUK Nurse Jeni
Posts: 1076
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Thu Apr 04, 2019 1:18 pm

Dear Keith,

Great to hear that Kerry's quality of life has improved so much since stopping folfirinox and that she is enjoying getting out and about again.

I hope that you all have a wonderful holiday, and the sun is just the job, especially with these cold spring days.

Best wishes,


Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Thu Apr 25, 2019 6:58 pm

Hi Keith, I have been thinking about you and Kerry, is everything ok.

Theresa

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Wed May 15, 2019 6:59 pm

Hi Theresa

We lost Kerry on 4th May.

She was out shopping with her Mum, came home exhausted and fed up and told me she'd had enough of the struggle. She died nine days later. It was a mercifully quick deterioration and she was only in the hospice for just over 36 hours. The bulk of her last few days was spent with us at home.

We are heartbroken. That was the quickest 14 months of our lives.

kate2101
Posts: 86
Joined: Fri Jun 15, 2018 4:20 pm

Re: This cruel disease

Postby kate2101 » Wed May 15, 2019 11:01 pm

Dear Keith and family,

I’m so dreadfully sorry to hear your sad news and know how devastated you must be. Kerry was blessed to have such a wonderful family, I know how much you will miss her. My thoughts are with you at this horrible time xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: This cruel disease

Postby boa » Thu May 16, 2019 7:19 am

I rarely post these days but I have followed your story. I’m so very sorry to hear your news and I am holding thoughts of you all.

Dee123
Posts: 31
Joined: Wed Aug 08, 2018 8:21 pm

Re: This cruel disease

Postby Dee123 » Thu May 16, 2019 9:08 am

I am so sorry to hear this news. Kerry was so strong, brave and determined. My family regularly checked for updates and her story gave us hope. This cancer is absolutely devastating and I hope they will find a cure for it one day. My thoughts are with you and your family xx

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Thu May 16, 2019 12:07 pm

Keith, I am so very sorry, Kerry was so young and such an inspiration, I followed your story so closely. My thoughts are with you and your family. X

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: This cruel disease

Postby sandraW » Thu May 16, 2019 12:16 pm

Keith, I am so very sorry to hear of the sad loss of your beautiful brave daughter Kerry. This is such a cruel disease, even though it was a shock that it was so quick, Kerry is now at peace. I am sending love and strength to you and the family for the next stage of your journey. take care sandrax x

PCUK Nurse Jeni
Posts: 1076
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Thu May 16, 2019 3:59 pm

Dear Keith, the whole family and Kerry's little ones,

We are so unbelievably saddened to hear your news regarding your lovely Kerry. Our thoughts are with you all as you attempt to come to terms with Kerry's absence. Please accept our sincere condolences on behalf of all the nurses on here.

Your posts were always so positive, with stories of Kerry's bravery and courage as she navigated pancreatic cancer. We are aware that it is difficult for you to contemplate why this has happened, and no doubt, deal with a range of emotions yourself.

You journeyed along this struggle with her Keith, and were such a support. We know how incredibly proud you are of Kerry.

I am sure that Kerry has touched many lives in her (too) short time here, and her legacy will live on.

Please do be in touch with us if we can help at all Keith.

With our kindest regards,

Jeni & all of the nurses here.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Borobi
Posts: 8
Joined: Wed Feb 20, 2019 9:23 pm

Re: This cruel disease

Postby Borobi » Thu May 16, 2019 6:26 pm

Oh Keith, I’m so so sorry. To lose someone of that age is so cruel and it must be incredibly hard for you and your children. Your story was one of the first I read when my husband (age 66) was diagnosed in February. It gave me and him such hope that there might be more life than the statistics state. At least the worst has now happened and Kerry is at peace. My love to all your family.

AndAde
Posts: 32
Joined: Thu May 18, 2017 8:51 pm

Re: This cruel disease

Postby AndAde » Thu May 16, 2019 9:15 pm

Hi Keith

So very sad to read your post. You and your beautiful daughter have been an inspiration.

My thoughts are with you and your family xx

franklyd21
Posts: 3
Joined: Thu May 09, 2019 6:18 pm

Re: This cruel disease

Postby franklyd21 » Wed May 22, 2019 4:26 pm

Keith, I'm thinking of your family. I'm so sorry for your loss. Her story will continue to be an inspiration.