Some useful information for looking after a pancreatic cancer patient, and supporting them should the worst happen:
- Caring Tips
- Preparing for the end
Getting the most from your Oncologist appointment
It can be difficult to absorb all the information given at your appointments. We found it helpful to bring a notepad along - both to write questions beforehand and take notes during the consultation. Someone should always be with the patient during these appointments to provide support and take any notes.
Keeping family and friends up to date
It can be time-consuming and upsetting to relay information over and over to family and friends. Blogs, Facebook and emails are a simple way of keeping people informed without the added burden or repeating your update multiple times.
During the time Avner was bed-bound he found it hard to manage to lift his head and upper body to drink, and came up with the idea of using a plastic bottle with a straw. It gave him the freedom to drink without spilling while lying down and the independence to do this without help. Bottles like these are available at chemists and supermarkets in the baby/toddler section.
It is a huge struggle to maintain a healthy weight through the treatment process. Some tips to try and overcome this include:
- Adding cream and butter to dishes
- Make porridge with milk instead of water and adding cream
- High calorie snacks such as chocolate
- Avoiding low fat products
Changes to appetite
In his final weeks, Avner found it difficult to eat and was put off by bigger portions. To manage this we kept portion sizes small and had a mixture of foods at each meal, with items separated on the plate. Be aware that sometimes a patient's tastes can change during treatment and check in to find what kind of foods they are craving and enjoying. In Avner's case we changed to a diet high in steamed fish, chicken noodle soup, scrambled eggs, cheese, yoghurt and fresh salads.
Although nurses are part of a hospital stay they often have competing priorities for their time. For peace of mind you may find it helpful to have a friend or family member on hand who can reach out to the nursing staff for additional care at times when they feel the patient may need some extra support.
I found it helpful to be there when the Doctors did their rounds, to be able to get information first hand and enable me to ask any questions. Be aware that some Doctors do their rounds very early in the morning so it helps to have the roster in place.
Reducing costs during treatment
Pharmaceutical Benefits Scheme (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 visited, so it makes life easier if you go to fewer chemists. Click here to find out more about the PBS Safety Net scheme.
PREPARING FOR THE END
Sadly for too many patients of pancreatic cancer the worst comes all too soon. The following are things we learned in those times leading up to Avner’s passing and the weeks after.
Passing away at home or in hospital
Until two weeks prior to Avner’s passing, his wish was to pass away peacefully at home. Unfortunately in the end his pain could not be relieved or managed at home and he was admitted to hospital.
Hospital was a good decision for Avner as he was able to see his Oncologist and Palliative care team on a regular basis. Avner’s pain changed and spread on a daily basis and the doctor was able to react in real time and adjust medication as required.
If your loved one wishes to pass away at home make sure you speak to your palliative care team about practical considerations such as how frequently they can visit, after hours care and medication changes.
The below are tips for a non religious service
We did not use a formal celebrant but instead opted for a personal touch and asked a good friend who knew Avner to officiate at his service. Whatever your choice you may still find it useful to speak to a celebrant as they can be a helpful source of information on how to manage the service and what is involved.
Make sure you check the details and the run sheet, as it is easy for mistakes to be overlooked.
Slideshow of photos
You may wish to consider showing a slideshow of photos of your loved one and things that were important to them during the ceremony. It can be a very powerful part of the service.
Record the service
Not all of our family and friends could make it to the funeral so we recorded the service and made copies available. Some people who attended may also like a copy to keep a record of the day.
It was Avner and my wish that he be cremated. We were informed by the funeral director that family members must consent to cremation, which is not something we had considered. Luckily Avner’s family was supportive of our wishes and we didn’t experience any problems.
If it is your loved ones wish to be cremated it is a good idea to get them to notify their family early on so that their wishes can be respected.
Financial/Banking considerations after passing
Accounts that are in the sole name of the person who has passed away will be frozen once the bank has been notified of his/her passing.
Accounts that are in joint names will not be frozen and these can continue to be used. There is one exception – credit cards that are in joint names. If the primary card holder passes away, the account will be closed and the surviving cardholder will no longer have access to the history of the account. Many people are not aware of this and it can be very frustrating. It may be worthwhile checking with your bank to see if the primary and secondary card holder can be switched.
Frequent Flyer points
Most airlines will cancel any frequent flyer points and close the account once they have been informed of a customers passing. One way of making sure the points don’t go to waste, is to do a transfer to family members prior to passing.