Facebook Guest Posts Cholangiocarcinoma Awareness Month February 2016
Introduction AMMF is immensely grateful to each courageous person who contributed a Guest Post for the charity’s Facebook page during Cholangiocarcinoma Awareness Month 2016. We know that each of these posts is a personal story with every word written from the heart, and that is exactly what makes them so very special. This year, the number of likes, shares and supportive comments each Guest Post received was beyond anything we have seen before – and the number of newsfeeds around the world that they reached was astounding. This has to be a true testament to the power of the written word and of the personal story when it comes to raising awareness. The 2016 Guest Posts now appear here, collated into one special brochure. The photographs (some blurry, but all very precious) and external links have been included, although these links will be live only in the download version*. Unfortunately, we cannot include the wonderful comments that appeared on each post but they do, of course, remain on Facebook.
Contents CC Day 1
CC Day 16 Claire Johnson
CC Day 2
CC Day 17 Lucy Elizabeth Smith
CC Day 3
CC Day 18 Georgina Lewis
CC Day 4
CC Day 19 Andrea Fear
CC Day 5
CC Day 20 Liam Crossley
CC Day 6
CC Day 21 Victoria Carney
CC Day 7
CC Day 22 Emma Brown
CC Day 8
CC Day 23 Jodie Horgan
CC Day 9
CC Day 24 Antonia Martinez
CC Day 10 Diane Peternel
CC Day 25 Nic Othmani
CC Day 11 Claire Bones
CC Day 26 Derek Owen
CC Day 12 Marie Reeves
CC Day 27 Sam Webb
CC Day 13 Harrison Prudames
CC Day 28 Terry Matthews
CC Day 14 Clare Henderson & Kirsty Mackay
CC Day 29 Hannah-Louisa Roberts
CC Day 15 Charlotte Simmonds
* A small quantity of these brochures have also been printed, and are available on request. (Obviously, the links will only work when the download version is viewed online.)
© 2016 AMMF (The Alan Morement Memorial Fund) Registered charity no 1091915
CC DAY 1 – GUEST POST from Beryl Jones This year again, I am writing my Guest Post in the sunshine of Tenerife, where Bill and I spend a couple of months each winter. I am happy to feature in Cholangiocarcinoma Awareness Month’s Guest Posts again, and this year to start the month off with my positive story. It will be 8 years on January 23rd 2016, since my surgery – I am living proof that with early diagnosis, cholangiocarcinoma can be beaten. I follow the CC Family on AMMF’s website and am often in tears when I see the new photos and read the younger ages of people who have lost the battle with this ruthless cancer, and I often ask myself, “Why me? Why have I survived?” But I have, and I feel I have been so lucky. So, I will continue to do all I can to raise awareness and fundraise for AMMF to help support research into better ways to that all important early diagnosis. Thanks for all the hard work of everyone at AMMF, and very soon I hope to see many more positive stories like mine. Beryl x www.ammf.org.uk/our-cc-family
Photo: Beryl and Bill in Tenerife.
CC DAY 2 – GUEST POST from Margaret McRobert Three years this April, the heart was ripped out of our family when we lost our special husband, dad and grandad, Derick McRobert, to the horrendous CC. So how are we feeling now? The shock of the diagnosis, which left us reeling, has faded. The agony of Derick’s operations and the nightmare sitting in ICU, as he fought septicaemia, are still vivid memories but not as painful as they were. The numbness in the weeks after he died has eased but the void in our lives is, and always will be, as great as ever. We will not, however, let CC destroy our lives. Derick, with his zest for life and his love for his family, would not have wanted that. The poem, read at his funeral, ended:
Photo: Derick McRobert.
“You can remember him and only that he is gone… Or you can do what he would want: smile, love and go on.” At family events, despite his physical absence, he never does seem too far away. At Christmases in the past, he entertained us with his accordion music and singing. This Christmas, we watched one of the DVDs of his playing. We felt he was actually in the room with us, as he smiled from the screen, and yes, we sang along with him and yes, we danced to the familiar tunes and yes, Grandad was there, playing his music for the children’s games. And yes, we smiled… Derick would have liked that. CC robbed us of an irreplaceable person. In Derick’s memory, we support AMMF’s fight against the disease. But… also in his memory, we will “smile, love and go on”. It’s what he would have wanted.
CC DAY 3 – GUEST POST from Jeff Chung My Dad: Hung Sing ‘Marlon’ Chung (20.10.1949 – 16.11.2015) “How’s work and the study going? Ultrasound scan of your dad shows a 4cm solid liver lesion…” It was 16.05.14 a Friday, approximately 5.30pm when my mother sent the text. Weeks followed with more tests, invasive procedures and anxiety. As a family we were, as my mum put it, “in a crisis”. I scoured the internet for causes hoping it would be a benign condition but, there was a sense of foreboding and CC niggled in the back of my mind. Our worse fears were eventually confirmed: An inoperable stage IV diagnosis and Dad who was otherwise healthy, was given a year to live. He remained calmly resolute and we vowed to help fight with him against this insidious disease. We never lacked hope or family spirit and this helped Dad through the challenging times ahead, Chemotherapy, Traditional Chinese Medicine and SIRT. It was decided Dad should go back to Hong Kong, his country of birth and upbringing. An opportunity to see family and friends possibly for the last time. His holiday was even discussed by the doctors in the MDT meeting! Dad was excited, he hadn’t been back since before his diagnosis. Unexpectedly, Dad was admitted to hospital with biliary sepsis on Day 3 of his holiday. It hit him hard and it showed, it was heart-breaking. Dad was repatriated to the UK via the SOS medical service, sadly his final wish. Dad passed away 2 days after returning. Dad’s journey with CC had ended but we learnt you can beat the odds if only by small margins. If you’re destined to lose the war then at least win a few important battles. We became grateful for the things that could have been much worse.
Photo: Jeff’s Dad, celebrating his 66th birthday…
Today is 2 months since we said our goodbyes. RIP Dad. You fought so bravely. Your selflessness, kind heartedness, inspiration and resoluteness will never be forgotten.
CC DAY 4 – GUEST POST from Kellie Hadfield I wasn’t sure if I would want to write my 2nd guest post but here I am. On 27th April 2015, just 9 months after being diagnosed with cholangiocarcinoma, my dad sadly passed away aged 63. My heart breaks for anyone who has recently been diagnosed and my heart aches for anyone who has lost a loved one to this awful disease. But in every single one of you I believe there is a new person who is walking that journey with courage, determination and hope; and a loving, devoted family. I devoted 9 months of my life to the best dad in the world and I’ll never forget my mother-inlaw telling me “there isn’t one single person on this whole earth who could have done more than you did”. Somehow our strength keeps coming; it seems that cancer brings out a resolve to make things as comfortable and pain free as possible, to ensure our loved ones get the best possible care and opportunities. It was critical for me to stay positive even when it felt like everything was falling apart and I feel honoured to have raised over £3,000 for AMMF so they can continue their vital research and also Bolton Hospice where we spent the last 2 weeks of my dad’s life; he was cared for with total dignity and respect by the wonderful staff and volunteers. Time is precious; never waste an opportunity to tell someone that you love them and don’t expect yourself to work miracles. Be kind and gentle to yourself so you are strong enough and well enough to look after loved ones who need you to help and support them.
CC DAY 5 – GUEST POST from Sandie Gapper Four years ago today, I was in hospital recovering from a lifesaving liver resection, totally unaware of my journey over the next four years. But, in time I became completely aware that although I could win some battles, one day I would lose the war. Cholangiocarcinoma is my enemy. I endured months of chemo and radio, another major life saving emergency operation, the breakdown of my marriage, the loss of a beautiful French home and lifestyle and had so many of my other dreams shattered along the away. However, throughout these four years I also made some dreams come true, embarking on experiences I’d never even dreamed about. I safaried in South Africa, dived along the Great Barrier Reef, bungee Photo: Sandie Gapper. jumped, fine dined in the Sahara Desert and danced in the Maldives to mention just a few. I shocked my medical team with outstanding results following chemo and along my journey I met so many new, amazing and wonderful people. With the endless love and support from precious family and friends, both old and new, I have smiled, cried and giggled my way through the last four years. Today, like every day now, I feel weaker than the day before as this silent killer gradually destroys my body. I only have months on my side and no more energy to fulfil more dreams. I pray that a cure for this evil disease will come soon, too late for me, but in time for others not to have to go through its harshness and its selfish destruction of life. I say thank you to the many wonderful people, family, friends, medical staff, Hayward’s House Hospice, my intrepid Little Bear and to AMMF (Helen and her amazing team) without whom the last four years of my life would have been so much darker. Cholangiocarcinoma, the silent killer, but I will never let it destroy or even dent my spirit.
CC DAY 6 – GUEST POST from Phil Pointon In loving memory of Nigel Pointon, a much missed Son, Brother, Father and Friend. May 7th this year will be the 2nd anniversary of my brother, Nigel’s life being suddenly cut short by the cruel cancer, Cholangiocarcinoma. Nigel sadly did not witness his daughter turning 18, passing her driving test, and continuing her university degree. His son turning 21 and being accepted into the Royal Marines… A promise to his father. Nigel would have been bursting with pride at his children’s achievements. ‘Team Magnificent 7’, myself, 5 friends and an honorary member we met via AMMF, successfully completed the 2015 London Nightrider cycle challenge. I was touched and humbled by friends who signed up to ride, our support crew, friends and family who helped support AMMF and a special mention to our children and their friends who took on fundraising efforts with enthusiasm and willingness. Our way of remembering a much loved man! To make sense of it all and gain hope, was the need to continue raising awareness and funds for AMMF. A close friend and tutor at Midkent College chose AMMF as the Year 2 business studies charity. Fundraising activities were arranged including a fete, bike ride and a charity quiz. I was amazed by the enthusiasm of the students. My wife and I attended the Cholangiocarcinoma Conference in February 2015 at Imperial College London. We met other people affected by Cholangiocarcinoma and learned about the research AMMF continues to support. And the annual Jimmy Gray Memorial Day, the organiser knew my brother from their footballing days, and again taken aback by how many people paid their respects to Jimmy. We have gained strength from these Guest Posts and the fundraising efforts of those affected by CC. This continues to provide us with comfort and hope that together the AMMF family will make a difference.
Photo: Phil Pointon with Nigel.
CC DAY 7 – GUEST POST from Nikki Greenall In memory of my best friend Helen Smith (23.5.75 – 26.10.10) – a shining star taken from us far too soon. She is dearly loved and missed by all her family and friends. Whilst our lives go on without her she is never left behind as she is tucked carefully away in all our hearts. The whole point of AMMF Awareness Month is to do just that – raise awareness. I had never heard of Cholangiocarcinoma before Helen’s diagnosis, and the chances are, unless you or someone you know has had this type of cancer, then you won’t have heard of it. It is a swift, brutal disease that steals far too many amazing people. You can find out about bile duct cancer on the all new and shiny AMMF website (and admire the particularly lovely ladies on the home page rocking the muddy obstacle course look! Jo we are famous!) www.ammf.org.uk/ Please share this page on your Facebook page so it might reach people who don’t know about Cholangiocarcinoma and the incredible work AMMF do.
Photo: Nikki and Helen.
Hide and Seek I’ve been looking for you in hundreds of ways In the setting sun and it’s dying rays Twinkling stars on a cold still night A shooting star in a blaze of light I can see you I’ve been looking for you in hundreds of ways In the rising sun with the horizon ablaze A rainbow soaring way up high A flower, a feather falling from the sky I can see you But I can’t catch you I’ll keep looking for you as the years go by When I hear your song, I’ll smile not cry Such beauty in life, so vivid and bright I know you survive in the dark and the light
“A Sky Full Of Stars” by Coldplay
I can see you I can’t catch you But I’ll always keep looking
CC DAY 8 – GUEST POST from Claire Bradburn Today marks the third anniversary since losing my Dad, Alan to Cholangiocarcinoma. Nursing my Dad through his very short illness is one of the hardest things I have ever done. It’s also what I am most proud of. I had always been interested in palliative care but having worked with children in education and social care settings, I felt I didn’t have the necessary skills/experience to pursue this. After losing my Dad, I was made redundant from my job working in a residential unit. I plucked up the courage to apply for a job at a local Children’s Hospice. I felt passionate about making a difference to those at end of life having witnessed some of the wonderful care my Dad had received, I wanted to give back.
Photo: Claire Bradburn’s Dad, Alan.
Unbelievably, I got the job. I was incredibly shocked. It felt like a calling. That, in some way Dad had guided me to do what I had always wanted, but never sure if I had what it takes. I was astounded to then realise that Liz Heywood (AMMF supporter, who had also lost her Dad) worked on the nursing team. It felt like destiny. Bizarre given that CC is a rare cancer, despite the incidence rate being on the rise. I hope my Dad is proud as I believe he sent me this blessing through his battle with CC and the journey we shared. CC is so aggressive, often diagnosed too late to be treated so we must continue to raise awareness as a legacy to those who have lost their battle, and for the brave who continue to soldier on. The aim of Awareness Month is to do something positive in our universal challenge against CC. We must nurture in life and death. I see this each and every day. Now is the time to make a difference! So here’s to AMMF and to February Awareness Month!
CC DAY 9 – GUEST POST from Jackie Pinfold In memory of Mum: Pauline Pinfold. At Christmas, dad and I said we couldn’t believe the second anniversary of mum’s death is close. Cholangiocarcinoma took away the pivot of our family too soon – we’ve missed her guidance, wise words, wonderful cooking, and terrific sense of humour. Dad and all of us have had to get used to life without our pivot. As mum lay ill, I told her I wanted to do a challenge for her, to help raise awareness of this destructive, vicious disease. Last year, I climbed the highest mountain in North Africa, Mount Toubkal, and raised £1500 for AMMF. My partner, David, did it too, raising a similar amount for the Stroke Association, a cause also close to our hearts. The whole adventure occupied me for the best part of a year, fundraising, planning, training, getting the right equipment – it made me feel strangely close to mum. I was worried that when it was over I’d start grieving all over again but I think it was part of the process. The Atlas Mountains were amazing – bleak but remarkably verdant, and the Berber villages we saw and walked through seemed to cling to the mountainsides. We set off for the peak at 5am on ‘ascent day’, in the dark, and my head torch stopped working as we scrambled over some massive boulders, plunging me into darkness! Saved by a very thoughtful young member of the party, who loaned me his head torch, on we went. By about 10.30am, we had the top of the mountain in our sights. More boulders, we felt like mountain goats! As I reached the peak, I could see mum in my mind’s eye, laughing away and telling me I must be mad but really I’m sure she would have been proud – and she would have loved those views! Photo: Jackie at the peak of Mount Toubkal.
CC DAY 10 – GUEST POST from Diane Peternel My experience of Cholangiocarcinoma was short and brutally painful. In March 2009 mum was tested but we were told a diagnosis couldn’t be confirmed or what the doctors thought it was; ‘Because it is very rare and we need to re-test’. Cholangiocarcinoma is so rare the doctors thought they’d got it wrong. I have been a fundraiser for AMMF since losing Mum just 5 short, horrendous and precious days after diagnosis. I started fighting my own health battles 2 ½ years ago, they remain undiagnosed and monitored regularly so to gain control of my life from the doctors, I started running and have never looked back. Last year I decided to combine the two and now I raise sponsorship for AMMF while doing my races and wear my AMMF vest with pride. I’ve done three half marathons and several 10k races so far with more planned for this year. This year’s fundraising page for anyone who would like to donate or share is: www.justgiving.com/diane-runs-2016
Photo: Diane running for AMMF.
Cholangiocarcinoma is still not being detected in time and is in fact so rare that in 2012 & 2013 the mortality rate for this disease was higher than the diagnosed incidents because the majority of doctors still don’t know to look for it. This cannot possibly be considered acceptable in this day and age and AMMF is fighting to improve these statistics. Nearly 7 years after losing mum if I visit a doctor and am asked what happened to her, my answer is still questioned.
I have now started suggesting they read up on it because if they think I could be wrong, then they need to improve their own awareness in order to help any future patients. This might not always go down well but it gets the point across!
CC DAY 11 – GUEST POST from Claire Bones (Cheeseman) My stepdad, Richard Rice, was a very fun loving, and great guy. At the beginning of August 2015 he started to go yellow, he went to his GP who sent him to hepatology for tests. The day after his tests and a scan, he passed out at home and got rushed to hospital which is where they told us he had terminal liver cancer. Whilst looking at his notes I saw the word cholangiocarcinoma. I had no clue what this was and researched it online and this is how I came across AMMF. He came home and myself, mum, my daughter Rachael and his sister Jackie nursed him 24 hours a day for 3 weeks till he passed. We had some of the best laughs and saddest times over those 3 weeks, I do think hospitals should tell all the facts and not just say “liver cancer”. We have raised five hundred pounds through JustGiving for AMMF and are arranging a raﬄe quiz night soon too. This cancer needs more awareness!
Photo: Claire’s stepdad Dick with mum Sylvia.
CC DAY 12 – GUEST POST from Marie Reeves In memory of my Mom, Rita Orton. It’s almost 2 years since my Mom, Rita Orton, died of cholangiocarcinoma at the age of 67 years, but we were lucky; she lived almost 12 months after being diagnosed. Twelve months for happy memories to be made for which we are very grateful. Mom fought hard and was determined to have a good quality of life, which she managed with great dignity and grace. After my Mom was told by doctors that there was no more treatment available to offer, she contacted AMMF. I know that speaking to Helen gave my Mom the hope to keep on fighting and she was determined, that even if she was unable to beat C.C. herself, she hoped she could help others. Typical of my Mom always thinking of how to help other people. So we continue the legacy by raising money for AMMF and raising awareness with medical professionals and friends. Mom was a loving supporting wife, Mom, Nan and friend who is greatly missed by all who were blessed enough to know her. Photo: Rita Orton.
CC DAY 13 – GUEST POST from Harrison Prudames “Forever in my thoughts and heart ‘The Ultimate Family Man’ my amazing grandad lost his fight to Cholangiocarcinoma on 22.02.2014”. When yesterday turned into today it was 46,794,900 seconds since my grandad passed away, he was my real dad and I lost “2 people” at once. At only 16 years old, I’m now the eldest man in my close family. There are certain things that still affect me, and will do for the rest of my life. After the loss of my grandad; I can’t sit in his chair at the kitchen table, I can’t go into the back room and trespass him. I can’t go into the front room and interrupt his “me time”. Even hearing a piano fills me with emotions and makes my heart sink. Since his passing the world seemed to slow down; the Earth doesn’t seem to spin anymore. Everything has just stopped since then and I feel stuck in time. Grandad made the world turn and I wish he was here. I still talk to him every night in a hope that that will make the world spin again. I live off the limitations and restrictions of pictures, videos, memories and an imaginary presence. I promised him lots of things, but 2 distinctive vows I will hold for eternity. Firstly, to take care and look after my family at all costs. They are my life and the ones who’ve shaped me into the person I am today. Despite everything that’s happened, I wouldn’t be me without a single one of them. Second, that I will try my hardest in everything I do. My desired and actual outcome of any task matter not if my efforts exceed them both. I would rather fail trying than succeed quitting. These promises have no distinct end point, they are on-going. This is my way! This is my coping mechanism. It’s my job to carry on a legend...
Photo: Harrison and his Grandad.
CC DAY 14 – GUEST POST from Clare Henderson & Kirsty Mackay Nikki Petrie – a Mum, wife, daughter, sister and Aunty who is very, very missed. Another year has passed and again we feel privileged to contribute to Awareness Month. It is 3 years since our sister, Nikki died from bile duct cancer when she was 41 – only 5 months after her first symptom. As I sat down to start to write our post, I was struggling to know what to write. ‘Take it easy’ by the Eagles began playing on the radio, one of the tunes from Nikki’s playlist that she wanted played at her funeral. It reminded me that despite her no longer being with us, she pops up at random times and we never have to look that hard to find her wee signs.
Photo: Nikki Petrie.
Nikki always had ‘sprinkles’ that she would put in presents or sprinkle on the table at Christmas. When we buried Nikki, we sprinkled confetti stars and on special days, the kids sprinkle her grave with stars. Our Mum often finds a star on the carpet in the house and the week before Dad died of cancer last May, every day we found a star on the carpet. Last year, on the weekend of her fundraiser, her husband found a star on the seat of his car. She even managed to give us a sign whilst on a trip to Rome when we stumbled across Nicola Street (Nicola is her name). Whilst we wait for her next sign, we have had some of Nikki’s clothes made into cushions. The lady who made them has done a fabulous job and now we all have something of Nikki that is there in our sitting rooms with us alongside our treasured photographs. I’ll finish by leaving you with one of her songs and a photo of our cushions:
“Take It Easy” by The Eagles
CC DAY 15 – GUEST POST from Charlotte Simmonds My mum, Susan Whitfield, passed away on 30th August 2013 after a 2 year battle with this horrible destructive disease. Having read other stories, I feel we were lucky in a way as she had nearly a year of being well after the first liver surgery when we thought she was cured. She came to my 40th birthday party, looked amazing, and I really thought she’d had a lucky escape. Unfortunately, in January 2013, mum got the news I think she secretly knew was coming; the cancer had come back. Mum was devastated, we all were but she fought again, had surgery again, battled septicaemia and numerous other complications with great strength, determination and one goal; to be around as long as she could for her grandchildren. Sadly, only 8 months after the cancer came back, she was just too weak to fight any longer and passed away with us all by her side. This illness took an amazing and devoted wife, a wonderfully supportive, loving mother, a playful, fun loving grandmother and my best friend. It also took an artist who was always creating. Her pictures and stories for her grandchildren are a gift we will cherish now and in the future.
Photo: Dennis and Susan Whitfield.
I feel honoured to write this guest post and telling mum’s story. We found AMMF 2 days after mum died and I know she would have loved this charity and the tireless work Helen and her team do.
Raising money for AMMF has been such a positive thing for all our family and Helen and her team have always been so supportive. I sell handmade flowers and flower prints – www.facebook.com/FlowersForSusie/, my brother walked a gruelling 100km from London to Brighton, my husband and son (7 yrs old) have done charity bike rides and my dad donates money every birthday, Christmas and special day he doesn’t have with mum. Our total raised to date is £4227.00 and we will continue to raise more.
CC DAY 16 – GUEST POST from Claire Johnson Mia The 16th of February will always hold mixed emotions for me. A day so full of dread, anxiety and fear, yet mixed with hope, relief, happiness and ultimately survival. Our youngest daughter Mia, at just 6 months old, had an operation that we are hopeful, has saved her life. At 7 months pregnant I was sent for a growth scan. I was not unduly worried as the same happened with my eldest, Rose and she was born at full term weighing a healthy 7lb 4oz.
It always amazed me seeing my unborn child. However, during a later scan we were told a choledochal (bile duct) cyst had been found, a known risk factor for Cholangiocarcinoma. I was stunned, I had only ever heard of this once before. A dear colleague, Helen Smith, had devastatingly died from this disease. Surgery, the only option, involved removing Mia’s gall bladder. So, on the 15th February 2015, Mia was admitted to Kings Hospital and the following day at 8am was taken to the operating theatre. I was allowed to be there when they put Mia to sleep. That moment will haunt me forever! We heard nothing for 7 hours! When we were finally allowed to see Mia in recovery, I wept with relief. Our baby girl lay surrounded by wires, but it was over, she had made it through surgery. After 5 days Mia came home and has since had two follow up scans and we’ve been told the surgery was a success. She will still have scans every few months but should be discharged in the next two years. My hope is that one day Mia will write her own contribution for AMMF’s Awareness Month and be able to tell people herself that she is one of the lucky ones.
CC DAY 17 – GUEST POST from Lucy Elizabeth Smith In Memory of my Dad, Stewart Smith “New Year, new Me”. It’s what everyone says but a new me started 6 years ago. If I rewind and think about the old me I was celebrating the New Year on a cruise ship in the Caribbean. I was 18 and in my first year at university, I don’t think it is possible to be more ‘young and care free’. However, that summer my life changed forever. My Dad got diagnosed with cancer, not just cancer, a rare form of liver cancer; Cholangiocarcinoma. It was 18 months of hell; hospital visits, operations, pain, sadness, work and university work but it was also a time where we grew closer and stronger as a family. Unfortunately my Dad lost his battle on 05.09.2011. Since then it has been a lot of New Years, new Me’s. In that time there has not been a day where he hasn’t been in my thoughts or that I haven’t been able to reflect on the amazing memories we were able to make as a family. My greatest sadness is that he cannot see me now, he missed my graduation, the completion of my PGCE and getting my first job as a teacher. Yet I must remember that he is here. For 20 years he gave me guidance and memories that have imprinted on who I am today. I wish he could see me now, so that he wouldn’t worry, so that he could see I am happy, settled and safe. It’s not always about New Year, new Me’s because every New Year I miss the old me and I miss you Dad. It’s about remembering your past and most importantly not taking the present or your future for granted. You will always be loved and forever be missed.
CC DAY 18 – GUEST POST from Georgina Lewis My husband, Adrian, is 49 years old and a serving Seargent with Surrey Police. We have three children, our youngest is only 8. In January 2015 Adrian was unwell and believing it was Gallstones attended our doctors’ surgery. After a scan the next day, he was admitted to hospital the following morning. We then received the devastating news, they believed he had Cholangiocarcinoma. A stent was inserted into the bile duct but unfortunately kept blocking. After several procedures and lots of pain, the stent was sorted. Adrian could not have chemotherapy because to obtain a biopsy was in itself a life threatening procedure. In April 2015 because the cancer was spreading a biopsy was then obtained and intense chemotherapy began. We were informed the cancer was inoperable – terminal. Life expectancy statistics were not good – we were devastated. Second and third opinions were sought from around the world to no avail. Our lives changed beyond recognition. Pain and sadness was a constant under the mask of normality. Faced with this devastating news and feeling totally helpless we turned our heartache into sometime positive. My family, along with our two eldest children’s partners, all did a charity skydive on October 25th raising over £7000 for AMMF. I am so proud, we raised money for research, awareness of CC and, made a wonderful family memory! Then, last month we attended St Lukes for Adrian’s latest scan results and unbelievably the massive tumour had disappeared! We are living proof there’s always hope and miracles do sometimes happen. My husband is still classed as terminal albeit the cancer cells are microscopic and he will continue treatment to manage the cancer. We don’t know what the future holds but I believe staying positive and fighting contributes towards an extended life expectancy or recovery. Photo: Adrian with his youngest son.
We have now become attached to AMMF and I am sure we will arrange more fundraising events in time.
CC DAY 19 – GUEST POST from Andrea Fear In loving memory of my Dad, John “Mac” Clark 11.12.1947 – 19.02.2011
“All the love you created is still there. All the memories are still there. You live on in the hearts of everyone you have touched and nurtured while you were here. Death ends a life, not a relationship”. Mitch Albom
5 years ago today my life changed forever, my wonderful, kindhearted Dad, the man who had always been there to protect and love me unconditionally, lost his battle with CC. The doctors thought Dad had gallstones, after numerous tests and a lengthy stay in hospital Dad was diagnosed with inoperable CC. Dad never once said why me, never stopped smiling and more importantly never gave up hope. As a family he gave us the strength to carry on. CC is often advanced by the time of diagnosis due to it being so difficult to diagnose accurately and early, and so surgery, currently the only potential cure, is not an option. Only 5% will survive one year from diagnosis. Sadly Dad wasn’t one of the 5%. I was always a Daddy’s girl and no matter how old you are a girl always needs her Dad. I miss seeing him sat in his chair, the sound of his voice, his hugs and most of all his ability to make everything better, no matter how big or small the problem was he was always able to make all my worries disappear. One of the hardest things is realising how much time has passed without him, birthdays, Christmases and milestones are all reminders. Even though CC may have taken my Dad, it can never take away the memories and love we shared, our bond was too strong for that.
Photo: Andrea with her Dad.
When Dad died, as a family we decided to help raise money for AMMF in his memory. Hopefully one day it will help make a difference to someone fighting for their life, to someone living in hope, to someone like my Dad.
CC DAY 20 – GUEST POST from Liam Crossley Lucy-May Crossley (nee Thomsett) – 20.03.1985 – 20.02.2015 Today marks the first year, the first 12 months, the first 365 days since the world lost one of its most amazingly precious gifts. On February 20th 2015, Lucy-May Crossley lost her 19 month battle with CC, she was only 29 years old. Not a single day, hour or second goes by where we don’t miss her deeply. Lucy touched so many people’s hearts throughout her life, I don’t I know a single person who would ever have a bad word to say about her.
Photo: Lucy and Liam.
Upon diagnosis Lucy’s drive and will to live created a refusal to go down without a fight or be defined by this! So with this we did everything in our power to keep her strong, fit and healthy to help her fight this horrible disease with the best possible opportunity! Then we found AMMF and began a touching relationship with Helen and her team. This gave Lucy another reason to continue with confidence and determination. Unfortunately even with all the support, information and contact provided by AMMF Lucy’s cancer had rapidly progressed and with options becoming very slim Lucy’s liver was now shutting down. But she was determined to keep trying different options to better her life expectancy. She underwent a procedure to give her more time but, unfortunately, this lead to her demise. Despite all of this happening so very, very quickly, she still managed to make my life amazing every single day and did me the honour of becoming my wife and making me the proudest man alive! I’m certain that every person who met Lucy or was blessed to have her in their lives will live the rest of their lives truly inspired by everything she was and will always continue to be. Don’t let it define you, let it show you how truly strong you are in spite of it… “Life isn’t about waiting for storm to pass, it’s about learning to dance in the rain.”
CC DAY 21 – GUEST POST from Victoria Carney In memory of my big Sister, Sarah Jane Carney – 07.10.1975 – 12.03.2015 (Aged 39) Sarah was one of life’s social butterflies; she met everything head on and had a real zest for life. Whilst growing up I remember being jealous of her as she went off to parties, I would always love to hear her stories the next day! We were close and even when she moved to Australia that never really changed – she was one of my best friends. Sarah first became ill in November 2013; she spent the days before Christmas in hospital having tests which revealed she had cancer, the original diagnosis pointed towards a rare slow growing cancer of the liver. We were assured there was no rush in starting treatment and wheels were set in motion for her to have a potential liver transplant. Unfortunately, this diagnosis was wrong, the next appointment in February 2014 revealed she had Cholangiocarcinoma and we were told she probably wouldn’t see Christmas that year. Friends and family travelled to Australia to visit her and give support to Mum who was there dayto-day. Sarah responded well to treatment at first and when we went to visit at Christmas we were happy she had defied the odds and could spend another Christmas with us and her two daughters. Unfortunately by February 2015 the cancer was winning the battle and she began to deteriorate but stayed strong and defiant to the end and I will forever be proud to call her my Sister. My challenge in memory of Sarah – 39 events for her 39 years. I first contacted AMMF not long after Sarah passed away; they have been an amazing form of support to me – and my weekly emails to Debbie always make me smile! I hope to continue to help raise awareness of Cholangiocarcinoma and support AMMF in finding an earlier diagnosis.
CC DAY 22 – GUEST POST from Emma Brown ‘We didn’t know we were making memories; we just knew we were having fun’ Nick’s battle with CC was short, only 3 weeks from diagnosis to that terrible day, December 4th 2014. Nick was only 33 and we had our whole lives ahead of us. Please, don’t ever think someone’s too young to get CC. Early detection is key! Everything happened so quickly, a blurred nightmare of bad news, but Nick took the situation in his stride and handled it with much dignity and grace. He smiled every day and continuously made me laugh.
Photo: Nick enjoying a day at the zoo.
But this horrible tragedy has brought many people closer and special friendships have formed. The tremendous effort of 73 people swimming in relay, the length of the Channel to fundraise in his memory. An overwhelming event organised by Andrew and Lee Clark making the first anniversary of Nick’s death a truly beautiful day shared by so many who knew and loved him. Nick would be incredibly pleased! I’m honoured to hold AMMF’s only allocated charity place in this year’s London Marathon. Nick was desperate to run in this and I’m delighted to do it for him. With only 10 weeks to go it’s getting very real and scary but Nick is my sole purpose to succeed. For anyone kind enough to sponsor me, this is the link.
‘Thank You’ in advance! Please come along and have a laugh on April 24th. The last 14 months without Nick have been difficult for everyone and some days seem unbearable, little things suddenly catch me off guard! An old text, seeing his favourite places or the smell of his aftershave on someone passing by. But I know he’s looking over us in testing times. I miss him and will love him always and forever. To anyone touched by CC, it’s ok to cry, it’s ok to be angry, why this has happened will never make sense, but with good friends and family it’s going to be ok. 22
CC DAY 23 – GUEST POST from Jodie Horgan Back in March 2015 we received the devastating news that my father, Trevor Ingram, had cholangiocarcinoma. Unfortunately it was inoperable and his prognosis not good, therefore we looked after him at home to the end of his journey when he slipped away peacefully a few days before Christmas. During his short battle, as a family we all became passionate about raising awareness of this rare cancer. Whilst we are only at the beginning of our fundraising journey we have already started to spread awareness of AMMF, encouraging our friends and family in the use of easyfundraising.org.uk and requesting collections rather than flowers in memory of Dad on our JustGiving page which has now exceeded £1,200 for AMMF. Dad inspired us with his optimism and positive thinking throughout last year and we tried to do what we could to make his final months as good as possible… including organising his “crush” – Linda Lusardi – to pop by for a cuppa! He encouraged us to remember the good times and happy memories, to move on with our lives and not dwell too much after his passing. Two months later and many tears shed, I’m now looking into 2016 with a positive, passionate approach to do what I can to help others in our situation and more to help raise money towards preventing this disease taking many more angels like my Father.
Photo: Trevor has a surprise visitor.
CC DAY 24 – GUEST POST from Antonia Martinez For My Mum, Angela Martinez Mum was first diagnosed with cholangiocarcinoma in August 2010. It came as a total blow to us all. She bravely decided to have a liver resection operation to gain more time and 80% of her liver was removed successfully, and cancer in the margins was detected and treated with chemotherapy. Had the consultants known the extent of her cancer she would have been denied this chance. Indeed they were surprised she survived the recovery and convalescence of the operation. Mum attends and participates at the Scottish HepatoPancreatoBiliary Network (SHPBN) Education Events, even on the day after chemotherapy! Her desire is for Clinical Management Guidelines to be amended allowing MDTs to consider operating on CC patients presenting with similar conditions she had in 2010, giving them a chance of life. In October 2014 my mum was diagnosed with a recurrence. Her energy levels fluctuate during her chemotherapy and Mistletoe therapy treatments but she continues working towards her goal, including a visit to donate clinical samples at the London Imperial College Biobank. Mum divides her time between enjoying being Grandma (her first Grandchild was born five years to the day of her first diagnosis) and sharing the extraordinary benefits she is experiencing with Mistletoe Therapy treatment. I wish there were no other sufferers, families, friends and carers affected by CC, but I am very grateful for AMMF’s Awareness Month. I realise we’re not alone and it gives me hope that one day we may at least increase survival rates if not find a cure. Mum’s journey with CC has had many low points but in these past 5 years, and still counting, we have also had many magical and precious moments. We hope my mum achieves her goal, enabling others to have this chance of extended life. Mum I hope I’ve surprised you with this post, every day you continue to inspire and surprise us with your strength, determination and faith. I know at times it hasn’t been easy but keep it up. Never give up on those dreams!
CC DAY 25 – GUEST POST from Nic Othmani “Always with me” Grief is a different personal journey for everyone. It’s not something you can just ‘get over’ and for many it lasts a lifetime. My guest post falls at a poignant time in my life, a time when Dad chats, hugs and hours sat talking things through is something I yearn for and miss incredibly. Losing someone so important is a pain beyond measure and the little things are what you miss most. A father’s guidance, that good feeling in your heart, a positive feeling inside that someone so important to you is supporting you in making a massive decision in your life. After ten years as a Police Service call handler, a job I loved and was proud of during ten years, I am moving to pursue a new career working with children. Dad sat in and watched me in the workplace just before I entered a new chapter in my life starting a family and getting married. The words he said at that time never left me. “You are wonderful at this job but it will not be your forever job Nic, you have so much to give in the future but this job will serve you very well as you enter the next chapter of your life”. At the time I remember feeling quite frustrated, I enjoyed my job, but Dad was right, like he was always right. The strength those comments gave me has made me grab this opportunity with open arms. If I have learnt anything from Dad it’s that life is for living and sometimes you have to take a leap of faith to feel alive. Thank you Dad for always being wonderful you, you were the most lovely man to walk this earth, your love of life and the way you saw the best in everyone and always dealing with what life threw your way with such incredible grace, calm and strength.
CC DAY 26 – GUEST POST from Derek Owen It’s amazing to think that our Dad (Arthur) was taken in December 2009. Reading all the stories each week, and seeing how many more loved ones have been taken by this awful rare cancer is heart-breaking. We were all shocked the day the news came and Dad was given less than 3 months to live. It then seemed every time we met another doctor – the time we had with Dad was getting shorter. But here’s the thing – we never gave up, my sister and I pushed and got Dad referred to a fantastic doctor at the Royal London. He kept Dad’s, and our hopes going for quite some time, but alas after nearly a year – the time had come for us to say goodbye to Dad.
Photo: Arthur Owen.
We weren’t aware of AMMF then, but ever since we have pushed every year to raise money for AMMF – and this year, amongst a few other things, I am in training for the London Marathon and the Welsh 3 Peaks Challenge. For anyone who might care to donate see the link below and I thank you in advance! One thing I have learnt is never give up! Even when our Dad left us. We have and will always push on and try to help this great cause and the wonderful things Helen, Debbie and the team do raising awareness of Cholangiocarcinoma. We’ve met some wonderful people on the journey, and I hope a lot more in the future – just wish our Dad was around to experience it too. uk.virginmoneygiving.com/ DerekOwen
CC DAY 27 – GUEST POST from Sam Webb Jean Webb (nee Parker) was born on 9th October 1939 and was sadly taken away from her loved ones on 29th November 2015. Jean was named after Jean Parker, a famous film star of the 1930s who was a favourite of her 21 year old father Kenneth Parker from Bristol. Unfortunately Jean’s father never saw her as he was a merchant sailor who was at sea and prior to her birth he had volunteered to replace a colleague aboard HMS Rawalpindi, which was sunk by the German battleship Deutschland during an early incident in the Second World War. Jean had married her childhood sweetheart, another Kenneth to become Mrs Jean Webb on 3rd June 1961 and remained happily married for 54 years with sons Timothy and Lawrence and grandchildren Sam, Marina, Warwick, Margaux and Freddie. She adored her family and they were all with her at the end of her life which was cut short by the illness which she had faced with great courage. Her main desire through this illness was to be at home, free of pain together with her family around her. She is irreplaceable and sorely missed by her family and all that knew and loved her. Monies have been donated to charity AMMF following Jean’s funeral and amounted to over £350.
Photo: Jean Webb.
CC DAY 28 – GUEST POST from Terry Matthews Today Mark would have been 58 years old. He loved the fact that I was 20 months older than him as I reached my big birthdays first. We were lucky enough to share 30 years of birthdays together but this year on my 60th, Mark won’t be here to take the micky out of me and share this milestone. In the same way sadly he also won’t be here to see his children and grandchildren reach any more of theirs. Like so many, by the time the doctors took notice Mark was already at stage 4 of his illness and was given less than a few months even with treatment. Mark never accepted this outcome and with true determination, courage and dignity he fought for 18 months helping to create some wonderful memories along the way and appear on local TV and radio for AMMF just months before he passed.
Photo: Mark Matthews.
I have been deeply moved by the posts this month. They have been both heart wrenching and heart-warming, reflecting the big loss we all feel. It’s nearly two years since Mark passed, the deep wounds have started to heal a little but never a day goes by without my thoughts turning to Mark. Most times though I can now do this with a smile rather than a tear. Wanting to give something back to the two charities that helped us so much, with the help of my wonderful family, friends and local business owners, last September we held a ‘Marlin Sports Car’ Open day in Mark’s memory. With over 400 people attending we raised a staggering £7,000 between AMMF and Hospiscare, a day to remember forever. Thanks go to CKC for producing this wonderful video showing some of the day’s highlights www.youtube.com/watch?v=wZi48BWHlD4 I have truly lost my soul mate but Mark’s gift to me and all those that knew him, was that ‘We all need to look to tomorrow and never regret yesterday, as it’s gone’. This is reflected in the Fleetwood Mac song ‘Don’t Stop’ which we sang at Marks funeral. “Don’t Stop” by Fleetwood Mac
CC DAY 29 – GUEST POST from Hannah-Louisa Roberts For My Dad Karl Roberts In January 2015 our dad started to suffer with a dull ache in his back and episodes of severe back/stomach pain. He went for an MRI scan and an ultrasound scan and it was thought he was suffering from gallstones. Unfortunately in May 2015, Dad was working away and collapsed, he started to lose weight quickly and was jaundiced. After a number of scans we were told the devastating news that he had cholangiocarcinoma at the age of 51, but due to early diagnosis he was able to have surgery. Whilst relieved that surgery was an option, we were told that it was very invasive and carried a risk of a number of serious complications. Luckily, after 7 hours in theatre, we received the news that they were able to remove the tumour. Dad spent a few days in intensive care before returning to a ward. Whilst the surgery was a success Dad suffered from a number of post-surgery complications. He became extremely ill and lost even more weight which meant he spent most of 2015 in Sheffield Hospital. (We cannot thank the staff enough on ward Firth 9) After what can only be described as the worst year of our lives, we are happy to say that Dad is now on the road to recovery and is slowly getting back to his old self. Unfortunately some people are not lucky enough to get an early diagnosis or able to undergo surgery. My sister Natasha and I are taking part in the Potters ‘Arf Marathon to raise awareness and support AMMF in their continuous efforts to research causes, methods of early diagnosis and treatment of this aggressive cancer.
www.justgiving.com/HannahandNatasha/ Photo: l to r: Mum, sister Natasha, Hannah-Louisa and Dad, Karl, at Natasha’s wedding in December 2015.
AMMF is the UK’s only cholangiocarcinoma charity, and is dedicated to raising awareness, supporting research and providing information on this disease. Working nationally, collaborating internationally for the UK patient.
www.ammf.org.uk [email protected]
Tel: +44 (0)1371 811811 Registered charity no 1091915