She's gone

[EmmaR]

Sarah you have put everything I feel about the loss of my husband into such a lovely poem thank you for that it will help a lot of us on the forum to come to some kind of terms with our grief .

Take Care .

Emma xx

[InfoForMum]

So glad it resonated with you Emma and didn't upset either of you and blown away by the compliments. I'm always hesitant about sharing poetry as it's such a personal thing. It's my last line of head-defugging defence as I'm forced to be so disciplined about words and rhymes, it's necessary to really poke hard at my feelings.

Also, a bit like being introduced to someone's new baby, it's so awkward for everyone if it's ugly!

Will take a break from navel gazing to catch up properly soon.

Sarah

[Cathy]

Hi Sarah

I just wanted to add to what Steve and Emma had written how much I'd enjoyed your poem. It gives hope in a time that feels quite bleak.

Thinking of you all

Cathy xx

[brodders]

I have been reading all the posts you have written and thank you for them. I lost my precious mum 9 weeks ago, just short of 11 weeks after she was diagnosed. It has been a truly terrible time. Nothing has prepared me for this. My mum was so amazingly brave. 5 weeks in hospital and then 5 and a bit at home, she was so very poorly in the end but so dignified. Your last poem means so much - thank you again. Going now I am crying !! Xx

[sandraW]

Sarah, thanks so much for sharing your lovely words with us, you describe just what its like to lose a loved one, but your lovely Mum will live on in your heart forever remember that,take care sandrax

[Didge]

Sarah, I do hope you get this published. It's a brilliant poem and so touching and helpful to others. Loss and mourning is ever changing especially in the first year. When my first husband died many years ago I felt as if I had done all my mourning in the year before he went (cancer but not PC) and kept on auto pilot for a while, especially as I had 3 young children whose loss I had to manage too. But after some time the image and memories of the sick, skeletal man I had said goodbye to, and who I was initially grieving for, were replaced by the memory of the healthy, hearty, pre-cancer man. And then I started grieving all over again for the healthy man I had lost, not the one who I was glad was no longer suffering! And a quick 'hello' to brodders and sorry for your loss too. You are a reminder that so many are silent viewers on here who hopefully gain from reading others' posts without us knowing anything about them or their stories. I will be thinking of you too in the months to come.

Didge x

[InfoForMum]

Ah honey, I was really touched by all the posts, but yours especially. It's what I'm waiting to have happen. The woman so ill to fade and the far reaching loss of all she was to land. Hope the bright spots are coming more often now.

Sarah

[InfoForMum]

As is the nature of this brutal monster there probably aren't many people still here who were around when I first started posting about my Mum's journey. The four year anniversary of losing her is in not many days and just so happened a random browser search brought up a link to the forum. I knew I probably shouldn't, but I did take a trip back over the last part of Mum's care and her last days. Now, having mopped up floods of tears and removed the makeup streaks from my chin, I thought I'd write a few words about where we've been since.

The biggie: I don't think about her anywhere near every day and I don't feel guilty about that. Of all the triggers that do bring her back, I reckon only about 40% make me sad now. They're mainly the things about myself or the kids that I viscerally want to show her or otherwise share (I'm on the scientific side of the 'she can still see' fence, but not beyond looking up and telling her about it anyway).

Every day my sister starts looking more like her. Interesting because I was always the mini-her and sis was always the mini-Dad looks-wise. It freaks us both out occasionally, along with all the mum-isms that come unbidden out of both our mouths in response to new ways our kids find to misbehave. Along with a wry smile at her guaranteed unworthy glee at me suffering the same frustration caused by my sis and I. yeah, I know Mum, serves me right for having smart kids.

Then there are my girls: my fabulous, terrifying, annoying, awe inspiring, infuriating, powerful, creative, adorable girls. Littlest is determined to make it to Junior Bake Off. My mum was an amazing baker and we often talk about her while we chuck another batch of shortbread or cup cakes in the oven. She does all that pretty much by herself now, but then she did start baking with my Mum as soon as she could kneel on a kitchen chair and not fall off it. Meanwhile my eldest is deeply into her books, one of the things that anchored my relationship with mum. Something my Mum sparked by giving her gorgeous books and reading to her almost every time they saw each other. She has a copy of the Secret Garden my mum gave her as a gift that she cherishes. Even when the rest of the stuff in her room is on the floor, that's safely on a shelf. She also loves her art and music, things she got from my dad, a chorister as a boy, and part-time artist as an adult. That would have pleased them both.

We've also recently moved. My Dad, in his final hours (an unbelievable 14, nearly 15 years ago), asked us girls to take care of our Mum and each other. After Mum died it was awful trying to keep her house up to the standards she worked so hard to maintain while looking after my family, going through probate, grieving, and trying to work. Making the decision to sell was also brutal, as was having the sale fall through not once, but twice over 18 months, all while incremental signs of deterioration chipped away at my cracked heart.

Then it was sold, after the kids had one last trip to catch some tadpoles from her pond, and I snapped the early flowering plants in her gorgeous garden.

After that my ties to the area were done. My sister was living 250 miles away. Paul's family was in another country, and because of work, where the kids went to school, and what happened with Mum we didn't have a pool of local friends. So we upped sticks, and now live a few miles away from my sis. Our new place is like the one I grew up in: end of a cul-de-sac with a field at the end of the road we kick balls about and throw frisbees on. My sis's place has a shady woodland kind of garden, a lot like the one we had at another family home. The kids love both and all go to the same school.

I still keep an eye on news about PC treatment and the hard work done by Pancreatic Cancer UK and I do the odd thing to support, but not really enough. I also, until recently, kept an eye on the Facebook pancreatic cancer families group, though I deleted my Facebook account in the wake of the Cambridge Analytica fun (I see too much in my day job not to take this very seriously). What I see says we've still got a massive distance to travel to bring primary care up to any kind of scratch and to inject a consistent clinical standard across the country for specialist care. I see better funding that's nudging towards self-sustainability, rather than a funding, expertise, and research capability feast and famine cycle. I see hope in development of simple diagnostic tests that don't rely on scans. I see hope elsewhere with immunology, gene therapy, and micro targeted non-chemo treatments, or non-chemo treatments that might actually coax our traitorous cells into letting the chemo work for a change. All that helps. All that makes me feel like all of my sharing, with Mum's permission, might have helped make some small difference.

So, a traditional War and Peace style post for me, but now I'm going to wish every person grieving, every person fighting this, and everyone holding their hand, or holding them up, all of the peace and strength you need to carry on. To all of the specialist nurses here...oh my god...how much more broken would I still be if it hadn't been for your level headed advice and support. You are incredible. To the purple army giving all that time and effort so less folk have to go through less of this...you are heroes, all of you.

I'm now going to step away from this giant cathartic outpouring and go and sit in my garden and listen to lawnmowers, insects, and birds. The same things I listened to with a large glass of red wine in one hand and a fag in the other while Mum and I spent hours and hours talking about everything under the sun and setting the world to rights (I quit smoking in Janurary too - reckon it took so long because missing her was so wrapped up with missing it).

It does get better lovely people, it really does, but baby steps. Life will fill the gigantic gap they leave in your emotional foundations, one thin layer at a time. Each one makes the falls less frequent and the pain when you land less sharp. At the same time you see more and more and more of them in what you see, say, love, and do each day. Daft things, annoying things, inspiring things, lovely things. They're there in so much of it, and so much more of it will make you smile.

Lots of love

Sarah

[sandraW]

Hi Sarah, how lovely to hear from you, I am still here less often now but just try and give some support as I received so much.

I am glad to hear you are doing okay, ok is all we will ever do really, its just 3 years since I lost Trevor, and I remember reading your post about losing your Mum on our last holiday in Gran Canaria. And who could forget your post about the "funeral" and all it entailed. sending love to you all take care sandrax xx

[PCUK Nurse Dianne]

Dear Sarah,

Thank you for such an amazing post. You words, I am sure will resonate with so many of our 'forum family', bring tears, shared emotions and nods of agreement for many familiar feelings. Your sense of self and the world around you has naturally changed within the last years Sarah with your loss of Mum, however it is lovely to hear you have found a new sense of life whilst still nurturing special memories and Mum's legacy.

Thank you for touching base with your 'other family' Sarah and sharing such a special tribute to all of Mum's presence that is still in your life. I am sure she will always have a place in your own 'Secret Garden'.

Wishing you well and special memories for a long time.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support phone line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk