Lesley Goodburn
@lgoodbu
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Using @Sethsstory99 to improve end of life care & raise awareness of pancreatic cancer #sethslegacy Views are my own
Staffordshire
Joined May 2009
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Pinned Tweet
Tomorrow it will be 9 years since Seth died I have written a poem called Bonds
#sethslegacy
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I have a new job !!! In mid June I will joining the National Institute for Health and Care Excellence as Head of Public Involvement and Engagement looking forward to working with my new team to improve health outcomes close the gaps in health inequalities and improve
#expofcare
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Health care professionals I need your help please share and retweet these top tips for pancreatic cancer they just might save a life please do share widely
@PancreaticCanUK
@macmillancancer
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Imagine you are married to someone you adore you have plans for the future you are deeply in love life is great then your husband starts to feel unwell within 2 wks he is diagnosed with pancreatic cancer 33 days later he is dead that's what happened to me pls share
#sethslegacy
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5 years ago today I spent my last night with my beloved Seth in some ways it feels like a million years ago and just like yesterday for the last 33 days have relived our story from diagnosis to death day by day grief doesn't ease with time
#sethlegacy
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Healthcare professionals I need your help please retweet this short video it helps people understand the signs and symptoms of pancreatic cancer spend just 2 mins and it might help save a life please help build
#sethslegacy
Far too many people aren't aware of the symptoms of
#PancreaticCancer
. So we created this video to help raise more awareness. 💜💜
#UniteDiagnoseSaveLives
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5yrs I knew little abt pancreatic cancer then after 2wks of feeling unwell Seth was diagnosed he died 33 days later he was too late for treatment too weak for palliative chemo I know so much now & I need your help to spread the word about symptoms pls read & retweet
#sethslegacy
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Today is world pancreatic cancer day and the purple sparkles are out to raise awareness in support of
#sethslegacy
watch for a purple hat later !!
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Serendipity today is Seth’s birthday and months ago I sent his oldest most favourite clothes to
@LoveKeepCreate
to make a cushion and a blanket they arrived today they make sad and happy 💜
#sethslegacy
happy birthday Seth
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Today its the anniversary of Seth's death truly the saddest day of my life but today on the sixth anniversary of his death I reflect on mature hope
#sethslegacy
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Tomorrow is the first of thirty days to raise awareness of pancreatic cancer to really focus on a disease that kills 1 in 4 people in a month I raise awareness every day I need your help in November to amplify my voice pls support in memory of my adorable Seth
#sethslegacy
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Staffordshire woman reaches fund raising goal in memory of her husband
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First steps in Antarctica it is beyond words…it is beyond beautiful ….also been up to my thighs in snow had to be rescued by expedition staff 😂
#GoodburnGoesSouth
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My dear auntie Margaret died tonight after a week of being in that place between life and death she was 92 a magnificent proud feisty kind wonderful woman I loved her dearly and I will miss her so much ….. rest in peace auntie Margaret 💔
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Today is Sudden unexpected death in epilepsy awareness day please share in memory of my nephew Archie who died suddenly in 2016 aged 15
#SUDEPACTIONDAY2018
#SUDEP
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As I reflect on sharing 18 of the 33 short and heartbreaking days from diagnosis of pancreatic cancer to Seth’s death and really taking note of the 8 years that have passed I am amazed that I have carved out a new life without him ..but he is always with me
#sethslegacy
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Tomorrow is Seths birthday he would have been 58 and would still have 9 years to go before retirement but there is no retirement because pancreatic cancer killed Seth in 33 days happy birthday Seth I will love you with all of my heart forever
#sethslegacy
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Pancreatic cancer killed my husband Seth he died 33 days after diagnosis 7 years ago I didn’t know the signs and symptoms now I do and I need you to know too and to share them as survival rates for this disease have barely changed in 50 years
#sethslegacy
pls retweet
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Healthcare professionals I need your help to get this new
@PancreaticCanUK
graphic out in the healthcare system please read understand and most importantly share with as many people as possible
#sethslegacy
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Each morning as come down stairs I pass a big picture frame full of photos of me and Seth on wonderful trips when Seth first died the pictures used to make me sad but over time they make me smile each morning but today for no particular reason they have made me sad
#grief
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Can I introduce you to Gertrude Goodburn she will be coming to live with me in early December she will be be know as Gertie she already knows her name
#GorgeousGertieG
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I am working in NHSI NHSE to bring together pt experience and QI in a more interdependent integrated way using the pt exp Improvement framework focussed on leadership culture and learning
#itsnotpinkorfluffy
#Improve4Patients
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Seth is never far from my thoughts but my purple garden heart bought a tear to my eye tonight I will love you with all of my heart forever Seth 💜
#sethslegacy
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Sometimes I feel like I run out of steam with raising awareness of pancreatic cancer but it’s much too important to give up so here’s the signs and symptoms
#sethslegacy
pls share you might save a life 💜
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I wanted to say a huge thank you for all the comments, good wishes, direct messages and love I have felt today about my new role at NICE 💜💜
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Last tweet of pancreatic cancer awareness month
22 podcasts
26 digital stories
2 education sessions
1 podcast
1 carers cuppa
30 purple hats/shoes
100s of conversations
Lots of Facebook sharing
loads of tweets
1 conference
Thank you everyone for supporting
#sethslegacy
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On the day of Seth’s funeral I wanted to wear his wedding ring but it was too big I wrapped a bit of wool around it I haven’t been able to find his ring for about 18 months but I knew it wasn’t lost I found it tonight in the most obvious place
#sethslegacy
💜
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Its Not Fluffy Its Fundamental - my piece about patient experience across integrated care systems, co production -
#Alwaysevents
and the value of the patient experience improvement framework via
@pcc_nhs
Insight
#itsnotpinkorfluffy
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I am pleased to say I have done 20 miles on the bike !!! And 35 mikes walking with
#GorgeousGertieG
55 in total so year to date 132 miles 🎉
#nhs1000miles
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On bank holiday weekend 7 years ago Seth and I were in Hay on Wye on a bookshop binge Seth was tired felt a bit off......six weeks later he was dead ...pancreatic cancer killed him ...,be aware of signs and symptoms pls read learn and share
#sethslegacy
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Back in Blighty shower fish and chips then an early night then one more flight a taxi then pick up
#GorgeousGertieG
tomorrow thanks for tall your encouragement over the last 3 weeks it’s been a wonderful experience
#GoodburnHeadsNorth
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A huge thank you to my Twitter pals for your comments messages support and love today it means a great deal
#sethslegacy
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This man was my world in 2014 he was unwell for a couple weeks and after an emergency GP appt was sent to A and E he was told the next day he had days maybe weeks to live he died 33 short and heartbreaking days later from pancreatic cancer
#sethslegacy
but
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The chief nursing officer
@RMayNurseDir
is familiar with the signs/symptoms of pancreatic cancer and she was to pleased to see Stan the snowman raising awareness so she made him a member of
#teamCNO
if you are unfamiliar with the signs of pancreatic cancer read/share
#sethslegacy
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Seth’s nephew is getting married in a couple of weeks just got a message to ask if they can have a photo of Seth at the wedding as he can’t be there in person his spirit will be there … my eyes are full of tears
#sethslegacy
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Oh just had to share my new trainers just arrived perfect purple and full of hearts 💕 my day is complete 💜❤️💜❤️💜❤️💜❤️💜❤️💜❤️💜❤️
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Seven years ago I was in France on holiday it was the last holiday Seth and I had six weeks later Seth was diagnosed with terminal pancreatic cancer he died 33 days later we had no idea he was ill maybe if we knew the signs & symptoms things might have been different
#sethslegacy
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I am so thankful for everything I have in life everything I have learned everything that brings me joy …. but doesn’t matter how thankful and fulfilled I feel…. I still miss Seth so much 💜
#sethslegacy
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14th June 2014 a date etched into my heart forever 7 years ago today Seth died I will love him with all of heart forever 💜
#sethslegacy
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This year it is sadly 10 years since Seth died since then I have been raising awareness of pancreatic cancer by using purple the colour assigned to pancreatic cancer people send me pictures of purple things and say it reminds me of you Seth and pancreatic cancer
#sethslegacy
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Todays I answered the door to man who had come to replace a panel in my conservatory I had forgotten he was coming and answered the door wearing my purple hat he asked if I was going to the races I explained he told me his mum died from pancreatic cancer he shed a little tear 💜
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For 7 years now I have been sharing the signs and symptoms of pancreatic cancer every few days the same tweets trying to make a difference to disease statistics that are truly shocking and which have barely changed in 50 years we have to make a change
#sethslegacy
pls retweet
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Thank you to everyone who has followed
@SethsStory99
over the last 32 days your love kindness and support has been phenomenal its the last day tomorrow
#sethslegacy
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I am absolutely delighted to be part of the
@hospiceuk
Fresh Eyes Team and to win the environment of care category
@PEN_NEWS
the People In Partnership group
#hukpip
shaping end of life care with professionals so proud to be the pt/carer not the professional
#sethslegacy
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Oooooh…💜💜💜💜💜💜💜💜 new shoes💜💜💜💜💜💜 for November and of course they are purple for pancreatic cancer awareness how could I resist ? I couldn't .....
@modshoesuk
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@RCArmitage
@PancreaticCanUK
Great to hear the reading from the Pickwick Papers at the concert tonight 💜
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I buy flowers every week for Seth its just a small ritual to remember the man who was my world during lockdown I was stressed when I couldn't get flowers so given the situation I have subscribed to have flowers delivered every fortnight first much arrived they were purple result!
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Todays purple headwear was a big statement hat especially for world pancreatic cancer day and it was the
#HopeNetwork
meeting
#sethslegacy
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22nd May 2014 Seth is so unwell his abdomen is so tender we cannot hug .. last night he slept with his left hand on my hip .. I wept quietly into my pillow and did not move
#sethslegacy
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Day off today painted my shed three coats now it’s a smart grey colour with a little bit of purple in tribute to
#sethslegacy
and
@PancreaticCanUK
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Join
@RMayNurseDir
#teamCNO
13th Feb for Patient Experience & Involvement in Quality Improvement conference for NHS Trusts heads of patient experience/engagement with places for patients book here to take part in joint patient staff interactive workshops
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Today was homecoming day for
#GorgeousGertieG
she is adorable but it’s been a big day and she is now asleep 💤
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Today has been a tough day.... birthday and anniversary and miss Seth more than you might imagine especially today but thanks to everyone who has been a rainbow in my cloud
#sethslegacy
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Eight years ago Seth died from pancreatic cancer he died in 33 days 1 in 4 ppl diagnosed die within a month I am sharing the events of our 33 short and heartbreaking days this month to help raise awareness and to highlight the 3aims of
#sethslegacy
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It’s Friday it’s not 5 o’clock and it’s not Crackerjack but it is a Friday flourish keeping up the working from home standards with shiny purple metallic shoes have a great weekend everyone
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I have been thinking tonight about how much I miss my regular retweeters the vast army of people who in the ‘old’ world would support every tweet about pancreatic cancer I want to say thank you I miss you & I hope we can get back reciprocal awareness raising soon
@PancreaticCanUK
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So many emotions 2day sadness elation sad news bad news & good news sending love to all those who need it and a huge thank to everyone who supports
#sethslegacy
every message retweet comment & message means so much Seth I will love you with all of my heart forever
#sethslegacy
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For pancreatic cancer awareness month I wore a different purple hat each day so when I had online meetings people would ask why I was wearing a hat and I would talk about the signs/symptoms of pancreatic cancer & the stats estimate reached 700_+ ppl during the month
#sethslegacy
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Taking a volunteer day today to do some work with
@PancreaticCanUK
only my 2nd time in London since March 2020 seems odd to at the railway station again
#sethslegacy
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14th June 2014 “ I died at 9.45am on 14th June and at 9.30 that morning, just fifteen minutes before I took my last breath; a member of the catering staff handed a menu to Lesley for the next day’s meal. There is just one question - WHY?"
#sethslegacy
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If there was a cancer where 1 in 4 people died within a month of diagnosis you would do everything you can to make people aware of the signs and symptoms wouldnt you ? well you can by sharing and retweeting the info below
#sethslegacy
in support of
@PancreaticCanUK
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My auntie Margaret is 89 tomorrow in the last 7 weeks I have spoken to her between 3/5 times a day on Skype in the last 7 weeks we have had online spa- fish/chips - curry - afternoon tea - painting by numbers- rhinestone art - scratch art tomorrow its a birthday party 🥳
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It’s been a long day just a bit of quiet in the garden and thoughts of Seth 💔 night all and thank you 💜
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My lovely Dad died 34 years ago today his life support was switched off and we donated his organs I still miss him every day 💜
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You may ask why do you tweet every day about pancreatic cancer well that’s easy to answer it killed Seth NO signs or symptoms until two weeks before diagnosis then told you have days maybe weeks to live Seth DIED 33 short and heartbreaking days later he had NO CHANCE
#sethslegacy
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After a day with
@PancreaticCanUK
now an evening catching up with colleagues and then another day of voluntary work with the charity tomorrow all part of
#sethslegacy
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When you wear a coat, you haven’t worn since last winter, put your hand in the pocket and find 15 quid result
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I facilitated a session for
@PancreaticCanUK
on supportive care I heard myself speak and I see myself on the screen I am still saying the same things as I did 9 years ago just wks after Seth’s death the woman who speaks in 2023 is such a different person I don’t recognise her
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So 4 flights 2.5 days 5 PCR tests and I made it to the ship 🚢. 1st leg of
#GoodburnGoesSouth
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13th May 2014 left at 4pm returned at 6pm Seth told me the consultant had told him he had late stage pancreatic cancer and he had days maybe weeks to live he was told when he was alone he had to tell me no nurse or doctor spoke to me there was nothing just nothing
#sethslegacy
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This weeks efforts with
#GorgeousGertieG
35 miles in rain mist and tiny bit of sunshine
#NHS1000miles
Gert is always fascinated by squirrels 🐿️
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A heartfelt thank you on world pancreatic cancer day to everyone who tweeted and retweeted who has worn something purple sent kind words or sat on teams call and listened to me explain why I am wearing on enormous purple hat you are all so appreciated
#sethslegacy
💜
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Keeping up standards with a bit of home office brightness in the shoe department
#Shoes4Smiles
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When Seth was in hospital dying I was integral to his care team I was not a visitor I was his wife crucial to his care I was also his voice his advocate and we gave each other strength our experience is shared in
@sethstory
#sethslegacy
#carepartner
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This is my nephew Archie who died aged 15 from Sudden Unexpected Death in Epilepsy
#SUDEP
today is online epilepsy memorial day and I have just lit a candle to remember Archie
@SudepAction
@Hesma_Lo
21 people die each week from
#SUDEP
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Set sail last night for Abu Dahbi new shoes lovely dinner and a glass or two of champagne
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Todays is the first day for 30 days where I aren't wearing purple I don't have on
#30pairsofpurpleshoes
and my first day without a purple hat pancreatic cancer awareness month is finished but building
#sethslegacy
and raising awareness goes on
@PancreaticCanUK
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Spent the most delightful afternoon with my auntie Margaret who was 90 yesterday we had afternoon tea including trifle and birthday cake she loved her tiara which was purple of course Happy birthday auntie Margaret 🎉🥳🎂🎁🎈🎊
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How very strange to read/reflect on words I wrote 4 years ago
I miss being Les
I miss Seth
I miss his passion for life
I miss his love
I miss his sense of humour & fun
I miss his warmth/compassion
I miss his curiosity
I will continue to build
#sethslegacy
"It's our story and legacy shared to make end-of-life care more person-centred and empathic and to connect people, especially healthcare professionals, with the innate human compassion that we all possess." -
@lgoodbu
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For
@DyingMatters
week here's my blog exploring how death has influenced my life please read and share
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14th June 2014 Seth died at 9.45am they said I could stay in the room with Seth for as long I wanted but I just wanted to get out I ended up crying sitting on a hard chair in the waiting area Pharrell Williams singing Happy on the radio & a cleaner buffing the floor
#sethslegacy
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Today is the 9th day of pancreatic cancer awareness month we only have 21 days left to to get the messages out about pancreatic cancer will you help ? please read share and retweet letting someone know of signs/symptoms could help save LIVES
#sethslegacy
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Today you dont expect that there is a cancer where
1 in 4 ppl die within a month of diagnosis
3 in 4 ppl die within a yr
7 in 10 ppl get NO treatment
2 in 10 get chemo and
1 in 10 get the chance of curative surgery
This the reality of pancreatic cancer pls share
#sethslegacy
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Ready to
#Sparkle4Seth
in pancreatic cancer awareness month- necklace earrings dress shoes hat ✔️ ready for 30 days of purple
@PancreaticCanUK
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5 years ago I trekked the great wall of China I met this lovely man Charlie he was the guide who often pushed by ample backside up the wall he was with me when I scattered Seth’s ashes he sent me a note to make sure I was ok & hadn’t affected by covid
#sethslegacy
#kindness
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I haven’t posted for a month but new totals 120 miles walked 60 miles on the bike 510 ytd last few days in Vienna but earlier in the park with
#GorgeousGertieG
#nhs1000miles
sorry it’s late I am at the opera
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Today’s weather is a bit dull so it’s an early working from home shoe share this week to cheer me up I present my new glitter sequin crystal metallic furry and best of all purple shoes are you keeping up the working from home shoes standards ? Have a great day 💜
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I know all about pancreatic cancer stats I have known them intimately for the last 6 years but just preparing a presentation seeing them all in one slide takes my breath away causes a stab of pain in my heart & brings tears to my eyes how can this be true in 2021?
#sethslegacy
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13th June 2014 Today I have steeled myself to do the saddest thing in my life so far I sat with Seth while he dictated a letter he wanted to be read at his funeral and he picked the music be wanted to be played 💔
#sethslegacy
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When you get on a train to stoke and realise you left your car in Crewe ! 🤣
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Yesterday sadly it was my cousin Tim’s funeral he loved his Crocs and his family personalised his floral tribute
#whatsmatterstoyou
doesn’t just apply to care it’s applies to funerals too
#RIPTim
@dyingmatters
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