Barbara is very low at this time, she made the effort on Sunday to have local visitors and spent some time calling distant family but lack of energy finally beat her, as she wanted to chat to you, unfortunately this will never happen, as communication has all but stopped. Tracie and I are keeping her at home and this is so hard on all, but as it was Barbara’s wish to die home, that we will see done. She is comfortable, but wants to go but as she said to me today, "trying to go but I don’t know how" Barbara has as you would expect arranged all her requirements for her funeral, busy to the end, Sunday last she wanted to see certain friends and had me busy arranging this during the day, at that time she was unable to leave her bed but still wanted to see these friends, a busy day to add several FaceTime contacts with grandson James who is ARMY in Darwin along with Frankie out 9 months granddaughter. Currently I have Tracie with us and she is a marvel, managing everything, just as bossy as her mother but all that is wonderful. With great memories, Barbara will soon pass out of this world, a cruel world that allows people to suffer such a cruel death but I am sorry for saying this however I am sure that you will understand. We are coping, shocking night last night, we found it necessary to call for Ambulance assistance twice, (waste of time) however after our palliative care nurse arrived this morning early we're back on track with Barbara resting comfortably. Barbara’s brother arrived here at 10.30 pm and after he spoke to her she became very restless and this continued through the night. Barbara is now unresponsive, just a matter of time now, love Neville L. It is with great sadness that I inform you of the passing of my loving wife Barbara, (6TH MARCH) who you know has been battling cancer for some years. Barbara was so courageous throughout these three and a half years always aiming to enjoy five years. Barbara enjoyed life, made everyone that she met enjoy it with her, a remarkable person who we all will miss. In her final days Barbara enjoyed her local friends and our family who were always so supportive through this tough period. Our family have all spent time here, constantly connecting with Barbara throughout making Barbara’s life so enjoyable in so many ways, perfect family in every way. Tracie has been here for Barbara, over the last four weeks, so caring, and managed everything perfectly as we travelled through the hell of these final weeks, it seems so cruel in the battle for life against this dreaded disease cancer. Barbara completed her bucket list but for one item as she became too ill to achieve it but I am sure that she will achieve this yet.? Sky Dive remains! We, myself and the family thank you for your strong support throughout, we thank you for being such a great friend to Barbara, you made her life so much better in so many ways, Barbara loved life, enjoyed everything that she undertook to achieve, you know your part in this life trip and may you reflect on these great times that you spent with Barbara. Barbara and I have always practiced the following. If you love and enjoy someone then give them time while they are alive, after is too late! Knowing that there is such a great distance between so many of us, and many are aged, some are unwell, therefore we understand if you are unable to attend the funeral. This we believe best, as you have already given us the greatest respect possible by your support during these final weeks. Maybe my being so honest seems disrespectful, please do not think this, I am being practicable as I know you will understand. With loving thoughts and kindest regards, Neville L.
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My wife Barbara is now six months after a Whipple, amazing how your personal life changes and as a carer I am always alert to those changers.
Barbara is travelling well, steady progress and just last week Barbara played her first game of golf, yes 18 holes competition. Barbara is so strong in her attitude to return to what we considered normal before the problem started and at this time she is almost there, a great recovery. Food digestion is an ongoing problem but with careful trial and adjustment we are winning the battle. One fact that may be important to some is that Barbara loved a salad meal and we found that lettuce can be a big problem, if ate to what was once called normal, so watch out for the lettuce upset.
May we wish all you lovely people a wonderful Christmas, a Christmas that you want, may you enjoy the pleasures of just being there. love from nifty.
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Seek a second opinion. Many surgeons are doing the whipple operation and most have had little experience, rule one, ask them what their rate is per year, must be at least 40, ask what the outcomes are, do they have a back up team. I do not know you position but if you are in Melbourne, then there are excellent surgeons. We used Dr Charles Pilgrim (Victorian Heoato Pancreato Billiary Surgery Group) who is outstanding, works out of Cabrini Hospital. Do not delay, seek other options, push hard till you get a result, a result to make you feel comfortable, just get out there and work until you make it happen. Nifty.
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Seventy two years of untroubled health, three unwell days turns into hell! My wife Barbara was diagnosed with pancreatic cancer, of all the cancers you can get Barbara always had the dread of ever having pancreatic cancer. The big question surfaces so fast, "why me, why us" as we have always eaten well, kept fit and lived a very good life in a country area of Victoria, supporting our family along with our community, as volunteers in several local organisations to and including Red Cross, Blood Bank Nurse Manager and CWA. With the realization of such a serious illness, life as we knew it was shattered, plans for overseas holiday with friends, destroyed. Naturally having never been sick before you automatically learn towards your consulting doctors for guidance, placing complete reliance on what they say and direct. Following such instructions and directions (from Doctors & specialist) almost immediately it proved to be disastrous, we lost 28 days in fighting this cancer when there was no time to be lost at all. We learnt to question everything closely, all advise given and to review carefully the histories of our present & future consulting Doctors and Specialists. Accurate information on Barbara's pancreatic cancer progress, size and position was at best, was being given as a "probability, or guess," at one hospital they referred to it as a "big hard mass" wanting to do an exploratory operation. We, the family sacked this hospital's doctors, as incompetent, which proved to be right. Moving to Victoria we found specialists who had a proven track record that displayed the skills for the desired treatment of Barbara. Within twenty four hours of arriving in Melbourne at Cabrini hospital Barbara was displaying signs of improvement where her bilirubin level of 580 had dropped to the four hundred area and continued to drop. Progress, the bilirubin level was eighty when the diagnosis of pancreatic cancer was detected, at the second hospital bilirubin was five hundred and forty when we left that badly managed hospital. Now at Cabrini in Melbourne the bilirubin after a successful ERCP (stent in the bile duct) was dropping for the first time since diagnosis, our first success in nineteen days of hospital. Again I clearly state openly and unbiased without prejudice that you MUST remember that their is brilliant, excellent, good, to the not so good to outright poor quality doctors and specialists. As there is in all walks of life! WHIPPLE Procedure for pancreatic cancer, Barbara chose to have this procedure, a huge operation with shocking complications even if everything goes according to plan. If you decide to proceed along this line of recovery, then listen carefully to every thing that your surgeon tells you, as ours was extremely detailed in what Barbara will face in recovery and the possibilities, if added complications occur. Nothing is easy about this operation, pain and suffering is assured, one on one care is needed, as a carer you will have many moments where you feel so helpless, useless even to yourself, and be assured that your stress levels, will be the highest that you will ever have obtained, nothing is easy about this operation. Recovery, two weeks in hospital may see you well enough but more likely three, one of the biggest hurdles with this operation is to restart the stomach, food is a dirty word to your recovery in this operation, nothing appeals even though you try so hard to force your self to eat, nothing much happens. All this time you are feed directly into your lower bowel by machine, nurses constantly monster your progress every two hours and this continues throughout the night, so little uninterrupted sleep results. In our case the stomach started to accept a little food after twenty days after the operation, Barbara returned to our accommodation in Melbourne after twenty four days, within two days she was back in hospital for four days being treated for constipation, a major problem in the short term with this kick starting the stomach. Now it is sixty one days since the operation, Barbara is undergoing chemo and radiotherapy at the Alfred Hospital, a wonderful hospital with the most caring of staff, yes everybody there is lovely and caring, nothing is a problem, this must be a unique hospital and how they achieve such high standards should be studied closely. Barbara today, eating small but regular meals, drinking smoothes along with plenty of water. Herbal remedy is also being produced and drank twice daily and this alone appears to be helping with reflux but who knows? Barbara's strength has a long way to go yet; but as she has always been an active person, never sick, played competition golf twice a week, walking the course easily along with being an extremely active community person. Our diet before this problem has been extremely good, home grown vegetables all year round form our home garden, citrus, soft fruit a plenty. Living on the coast we ate a regular amount of fresh fish, yes our diet was regular in all that is consider good for you. The future, hopefully a return to the coast within another month, a return to a regular life in what we refer to as paradise, yes we know that life will have changed for us but we will make the best of what we have at this time by simply getting on with whatever comes our way to the best of our ability. Update, 20th Oct 2016 we are home on the coast at Merimbula, Barbara is constantly on the improve, she is as always, actively working hard to return to all normal actives. A cure for constipation is fresh orange juice I would welcome any one who has a query, or who just wants' to chat, either by phone, email, or to chat to Barbara call her on Face time. address is firstname.lastname@example.org 25 November 2016 Barbara is almost back to what we considered normal, naturally she has to watch carefully her activities in to not over do things but in general she is doing wonderfully well having made a remarkable recovery. Barbara has had a goal of being well for our grandson James second MARCHOUT after completing his second Australian Army Training at Singleton in NSW. Barbara was so unwell for his first march out at Kapooka that it was impossible for her to attend it. Our plans are in place for this March out at Singleton, a big drive from Merimbula over 700 Kms but Barbara has all in hand as usual. This will be another goal post achievement for this amazing lady, positive with drive.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.