These are tips, learnt first hand, that may be of help to those caring for a loved one with Pancreatic Cancer.
Appointments with Oncologist
It can be difficult to absorb all the information given at appointments. We found it helpful to bring a notepad, to write questions before the visit and to take notes during the visit. I think it goes without saying, that someone else should always be with the patient during these appointments to give support and to take the notes.
Keeping Family and Friends up to date
It can be time consuming and upsetting at times to relay information over and over again to family and friends. Blogs, Facebook and emails are ways of keeping people informed without that added burden of repeating the updates multiple times.
During the times Avner was bed-bound, he found it hard to manage to lift his head/body to drink, he came up with the idea of drinking from one of those plastic bottles with a straw. It gave him the freedom to drink while lying down (without spilling) and the independence to do it without help. You can buy them at chemists or at supermarkets in the baby/toddler section. The brand I got was Tommy Tippee.
- It was always a struggle to maintain weight, things we did to get around this was:
- Add cream and butter to dishes
- Make porridge with milk instead of water and add cream
- Snack on chocolate or cake
- Use full fat products
Changes to Appetite
- In the last weeks Avner found it more difficult to eat and was put off by bigger portions. We found the best way to manage this change, was to keep the portions smaller, have a mixture of foods at each meal and keep things separated on the plate.
- His tastes changed also and he began to crave Mediterranean type foods such as:
- Slices of cheese, boiled eggs, olives, eggplant salad, grated carrot (raw), lightly steamed veggies, natural yoghurt.
- For dinner I cooked dishes like; Steamed fish, chicken noodle soup, scrambled eggs
Like with every thing in life there are all kinds of standards, a lot of nurses were caring, kind and helpful, unfortunately some were the opposite and I would question why they are in the nursing field, let alone palliative care.
It was a frustrating and upsetting reality that with some nurses you had to monitor what they do, make sure they gave the correct medicines, at the right time and they treated Avner with care and respect.
In Avner’s last days we started a roster so that there would always be someone with him, to look after him and to make sure he received the appropriate level of care from the nurses.
I found it helpful to be there when the Doctors did their rounds, to be able to get the information first hand and also to get answers to my questions. Some of the Doctors do the rounds very early in the morning so it helps to have the roster in place.
Paperwork - Ways of reducing costs
PBS Safety Net card
- You are entitled to get a PBS safety net card once you have spent a certain amount on prescription medicines in a year.
- Prior to getting the card, it is necessary to get a PBS statement from each chemist you have gone to, it makes life easier if you go to fewer chemists.
More information at:
- You can claim a tax offset of 20% – 20 cents in the dollar – of your net medical expenses over the current set threshold. There is no upper limit on the amount you can claim. (Net medical expenses are the medical expenses you have paid less any refunds you got, or could get, from Medicare or a private health insurer).
- So keep track of all the medical invoices/statements and speak to your tax accountant.
More information at: