I sit at my keyboard tonight writing the most horrific thing I have ever and will ever write. Last night 4th March 2011 at about twelve midnight our darling daughter Juliana died. She was thirty nine. Too young to die, too young to have suffered as she did and undeserving of such a terrible death. Ju was such a stoic and stalwart person and she fought her pancreatic cancer with such ferocity that she turned the months that she was given into more than three years. You may wonder why I would write this, I do it to celebrate her life and her courage and to give courage to those who are walking along the same path that she did. Some people say that you cannot battle against cancer, this may or may not be true but I can only speak from what I witnessed our dear girl manage to do and, damn did she fight it. Pancreatic cancer is one of the hardest cancers to win that battle over as when symptoms begin to appear the cancer has taken such a hold that it is very difficult to contain, add to that the fact that the pancreas is not an easy organ to get to.
Ju noticed a swelling on her right side of abdomen late in 2005 but thought nothing of it until the summer of 2006 and when having it checked out was told that it was a benign serous cyst, the diagnosis was shortly changed to a solid-pseudopapillary tumour, again benign and medical opinion was to leave it alone as the operation to remove it was a major one. However as time passed and Juliana fell pregnant with her third child, Raphael (Raffy) in 2007 she started to have major problems, jaundice, weight loss, pain. She was advised to abort the foetus but that was an impossible thing to ask of our daughter and although she was in extreme pain through blocked vessels leading from the pancreas/spleen/gall bladder, was actually losing weight through the pregnancy and not putting weight on, she went to almost full term until she finally had to have a caesarean as there was risk of both her and the baby dying. Raffy was born safe and sound 14th December 2007 and is the loveliest of grandson. Juliana got worse and finally a decision was made for her to go in for surgery, two months after the caesarean, on St.Valentine’s Day 2008. The procedure is called The Whipple Procedure and took approximately eight hours and entailed removing the benign tumour. However, upon removal, the surgeon discovered a malignant tumour that had been hidden by the cyst (a number of biopsies had been done and all came back as benign) and upon identifying it was distraught to realise that the malignant tumour was also present. He removed as much of it as possible as some of it was around the portal vein, an almost octopus-like vein which carries blood to the liver from the digestive system. It was too delicate and too intricate a place to remove the entire tumour and some had to remain. She also had to have a vein taken from her arm and grafted to where one was too badly damaged. He also removed some lymph glands from the area as a precaution. Then she underwent aggressive chemotherapy and radiotherapy on the area and the outlook was fairly optimistic. Her children were enthralled with the 44 staples she had across her belly that looked almost like a zipper, but she was sad she couldn’t wear a bikini anymore.
Recovery from the operation was hard as she had already depleted her reserves of energy by the pregnancy and caesarean, also add to that the fact she caught C.difficile whilst in hospital. But the worse news was twelve days later when pro-op biopsies showed there were signs of the cancer in adjoining lymph glands. However she continued with the chemo and radiotherapy and looked into changing her diet, less red meat, no sugar at all (cancer loves sugar) lots of fruit and veg (a lot juiced) tried to change her PH from acid to alkaline as cancer prefers an acidic environment, she also tried to get more oxygen into her system as cancer progresses quicker when oxygen is lacking. She started to put weight back on and feel a lot better and we were all so excited by the prospects of a remission or at least some extra time for her to raise her three children and spend time with her loving husband, Gareth.
But just before going on a holiday to Menorca with the family in May 2010 she had results back from a check-up that showed tumours in the lungs and elsewhere, the news was devastating but she still went and gave the kids a great time but was experiencing the beginnings of the pain that would stalk her until the end. Gradually she began to lose the weight she had fought so hard to win back and was told it was due to ‘cancer cachexia’ which is a wasting disease that end-stage cancer patients tend to suffer from. From what we investigated (we were both trawling the internet in the hope of finding something that would help) we found that it stops the body absorbing the fats and goodness needed to put weight on and actually takes from the fat and muscle stored in the body. We understood that the cancer more or less extracts the glucose from the tissue and leaves a by-product of lactic acid, the liver converts the lactic acid back into glucose and the cancer extracts it again, a vicious circle that cannot be broken, we tried supplements and changed her diet to include foods which would help her with energy reserves but she continued to lose weight and stabilized at 7 stone, however she was now a shadow of herself, bodily but not mentally, she would still thrash me in online games such as Warcraft etc (hi guildies!) and even in her last days beat me to a pulp in Scrabble. But the time came when however hard she fought to contain the disease the disease fought harder. But that did not deter our lovely girl. Even in horrendous pain she booked a holiday to Barbados just this last January 2011 for herself, her husband Gareth, Anna my wife and her Mum, Joseph her eldest son, Summer, her daughter and Raffy her youngest son. I didn’t go because, forgive me Ju, I have an extreme fear of flying and didn’t have the nerve to go. Upon return to the UK Juliana deteriorated and was taken into Ty Olwen Hospice to help with her medication and pain relief. She told me she was frightened that this time she would not be leaving; I said she was being silly, but she was right, as usual, and after two weeks of escalating pain and the subsequent pain relief medication to alleviate it she was sedated to help cope. Last night Anna, Gareth and I sat by her bedside as she slept and held her hands and told her to let go, she had fought long and hard and was continuing to fight with such a determination that I feel ashamed that I can be so scared to go on such a simple thing as a holiday whilst she battled against a foe that is the cruelest imaginable. Finally, in her sleep and without fear she breathed her last and left a void in our lives that all the words that have been written or could ever be written would never fill. Sleep peacefully now our darling Juliana; you deserve it, and much much more.
Love, Dad and Mam
I’d like to thank the staff of Ty Olwen for their love and kindness they showed to our daughter. I’d like to tell anyone that reads this and is a sufferer too that things are not just black and white, there are shades of grey. Research what afflicts you and try making your body an environment that cancer does not enjoy inhabiting. Juliana found out late but what she did to fight it I am sure extended her time and she used that precious time to give her love to her children and husband.
I am no cancer expert, I am no doctor, I am no expert at anything; I’m just a Dad praising his beloved daughter.
22 comments:
Grant Higgins Words cannot describe the loss that you must all be feelling and yet words are all that Suzanne and I have to offer in support. Juliana was a gift from God to us and to have had her friendship was an amazing privilege. She will always be in our memories and the time she was in our lives will be cherished and kept close to our hearts.
We send our deepest, warmest most heartfelt wishes of love and support to you,Anna,Gareth and the kids as well as all the extended family.
Love from Grant, Suzanne and Isabella.
I am a complete stranger, but your post has really moved me. Ju sounds like an incredible fighter. I'm going to remember her name, use it as inspiration.
I wish you and her family the best. Grief is numbing and never leaves. I just hope you can find a way to every now and then see past it.
Regards
Alex
Utterly devastated to hear that news, Bob. All your friends who read this today will share your grief. As a father myself, I cannot put into words what I feel. My wife - whose sister died some years ago of pancreatic cancer - has also read your account with great sadness. Indeed words alone are surely not enough. Deepest condolences and our thoughts are with you.
des and denise
To my beloved beautiful Sister Juliana..
You are an Angel sent from heaven, a beautiful soul that has graced the world with your presence. You wrapped your gorgeous little children up in your loving mothering wings, giving them all of your love until the very last moment..
You are a beautiful soul, an inspiration to all those who met you, and to those you gave so much advice and encouragement to on the internet. You are a loving and caring Mother, an understanding and loving Wife, a most precious special little girl and Daughter, Grandaughter, Neice and Cousin, a truly wonderful and inspiring Sister, that looked out for me all those times when we were younger, you will be sorely missed by so many, but you will only strengthen our hearts..
I'm so sorry I could not be there for you when you needed me the most.
I only ever wanted to protect you.
You have set your space in heaven with the Angels, waiting for us to join you soon..
Your loving Brother, in blood, and in Christ, Steve.
Really really really sorry to hear this news!
That's so sad, Bob.
I wish you all strength...
steve
I'm so sorry to read this Bob. I only met Juliana a couple of times but know that there will be a large hole left in your lives.
My thoughts are with all of you in this difficult time.
Steve
Bob...face book me your address and mobile please
Paul
Hi Bob,
I hope that this helps.
http://dampfpanzerwagon.blogspot.com/2011/03/princess-juliana-chasseur-elite.html
It is in a small way a tribute to my lovely niece.
Lots of love from
Tony and Sue
Bob, you don't know me, but all I can say is that I'm devastated to read this. I can't imagine a worse loss to suffer. It's made all the more painful to read by the courage, dignity and selflessness your daughter showed. She was clearly a remarkable woman. All the very best to you and your loved ones at this painful time.
I have read the tribute to your daughter. Although I never knew her, I am sending your my heartfelt sympathies to you and all the family on losing a brave beautiful daughter, wife and mother. The story of the bravery, love for life and fighting to conquer is incredible. You will always be in my thoughts. Juliana was a joy to be with and will be in the hearts of all you knew her forever. Take care and love and God bless you all.
Bob, my heart goes out to you and your family. I cannot imagine the greif you are going through at the moment.
I hope time will ease your pain I imagine it could never take it away.
My thoughts are with you and your family.
Rob (tafflaff)
I'm so sorry to hear this Bob, so very sorry. At times like this words seem so inadequate. My heart goes out to you.
Bob,
You don't know me but I used to work with Juliana at ntl:.
I can't tell you anything about her you don't already know but she was the kindest and lovliest person I've ever known.
As a father myself I can imagine how hard this was to write but you've done her proud.
I wrote this for her, I hope in some small way it brings comfort: http://www.mattknott.com/content/blog/2011/03/Juliana_1971_-_2011.html.
If the funeral is open to friends, a number of us would dearly love to come if there was some way you could let us know. My thoughts are with your family at this difficult time.
Matt
What can I say, Bob? You know what I think about this.
I'm very sorry to hear about your loss - damn that sounds trite. I just hope the world will seem lighter given time. I just don't know how a parent manages to get over this.
All the best to you and your family.
I, like Matt above, knew Juliana through working at ntl:
We were a very close group and Juliana was very much at the heart of it. Her kindness and warmth endeared her to anyone and everyone she met.
Simply knowing Ju is a privilege, calling her a friend nothing short of an honour.
Reading the details of her fight is something that will always stay with me. As upsetting as it is to read, she will always be (as she always has been) an inspiration.
My most heartfelt condolences go out to you, Anna, Gareth & the children, Steve and the rest of your family.
Alex
Hi Bob i am so sorry to hear the sad news about Juliana. Juliana gave me great comfort when my dad passed away due to PC. Juliana was a very brave lady and will be missed by everyone on PCUK
take care sending all my love to you and the rest of the family at this sad time
love Pauline x
Dear Bob
I am so so sorry for your loss - I used to follow Juliana's posts on the PCUK website as I also lost my daughter aged 27 to pancreatic cancer last year. Her posts were always upbeat, encouraging and extremely supportive.
I so feel your pain and understand totally what you are experiencing. My thoughts and prayers are with you and your family.
Sending love
Debbie ( Mother of Gemma Harrison)
I really don't know what to say....I am so upset and my thoughts are with you all
Bob, I am so sorry to hear of your loss. I wish you and your family strength in the time ahead.
Regards
Morva Shepley
Thank you Bob for communicating such difficult news so eloquently.
I too was privileged to work with Julianna during her time at ntl.
I was so fortunate to bump into Julianna and Gareth in Mumbles just after Christmas, having not seen them both since they left ntl. I knew of Julianna's illness, but she seemed so high spirited... so 'normal' that day, that the topic was not brought up.
I can picture her now wearing combats on our first day of training in ntl as if it were yesterday, and not 11 years ago. Affectionately known as 'LockJ' (the ntl username format), so 'cool', so kindhearted, so inspiring... and so much fun.
I'll never forget her living room wall in Frampton Road that was painted with a black and white cow design. Nor the time she crashed a Go Kart through the pit wall at Carew Airfield at high speed, and ended up on top of a bank.
So many fond memories of such good times with good people, with as Alex said, Julianna at the heart of it.
My sincere condolences,
Gareth
I've seen your work around, Mr. Lock. I am so, so sorry about your loss. Be well. All the best to you and your family.
Post a Comment