Pancreantic Cancer road of experience

[nifty]

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 niftybarb@bigpond.com
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.

[me_mum]

Thanks for sharing your story, mum was diagnosed in October this year 2016. Within one month she was developing Jaundice and had back pain, nausea and was not eating well. She was set to have a Whipple procedure last friday but they saw that the tumour had grown more than 4cm from when she had her last scan. So they did two bypasses one to fix the jaundice and one to assist with digestion. She just arrived back home two days ago and is still abit nauseated and has troubles eating (my guess is she is still recovering from the operation).

The doctors have advised she do strong Chemotherapy  (i am not sure what this involves yet), to shrink the tumour to then be able to complete the Whipple procedure Feb 2017. My worry is will the tumour spread before she starts chemo which is a month away. 

Any advice would be great.

I am happy to also provide support and share my knowledge of what we have experienced with anyone going through the same diagnosis.