My mum was diagnosed with pancreatic cancer and underwent Whipple's surgery at the end of last year. She's now had 6 months of chemo and is enjoying some recovery time, although feeling pretty ravaged.
We didn't find any support locally for pancreatic cancer. Avner's Foundation run a walk in capital cities to raise money for pan can research, so we volunteered to run the one in Brisbane this weekend (Sunday 30 Oct 2016).
Look up Avner's if you are interested.
Our aim is to meet other families suffering this terrible disease.
We're blown away. Expecting about 100 walkers and over 300 have registered already.
There is a real need to be able to reach out to each other.
Best wishes for your own journey.
... View more
Thanks so much for your comments kj. I was hoping you would reply as I have seen a number of your helpful posts relating to pancreatic cancer. I read your message to mum and she greatly appreciated it. Just hearing that pain is normal. She is in her early 60s. She is also finding that eggs in the morning is tolerable. Thanks again. Glad to hear that you are well.
... View more
I'm trying most avenues to try to find others who have recovered from Whipples surgery for pancreatic cancer. It's great to find this forum.
My Mum had her surgery 12 weeks ago. While the surgeon terms it a success, the post-op recovery has been slow. I also think that our expectations were quite different from what the reality would be. She is able to eat well, which is a huge achievement, but the pain left her bedridden for 7 weeks. As a result her mobility is fairly restricted. The pain persists, although with different intensities.
She is interested to be in touch with others who have had this surgery. Mainly to be reassured that ongoing pain is normal and that it might eventually go away (what timeframe??). The surgeon had said that one patient was running 5 km only weeks after his Whipples. This has not been our experience at all!
It seemed impossible to us that her body would handle chemo after the surgery, but she is strong willed and has now completed the first cycle of Gemzar. She's getting a portacath next week. Not pleased at all to have more surgery and something else that will cause pain, but it seems the consensus is that this is better in the long run.
We'd be interested to hear others experiences with similar surgery/treatment.
For anyone else trying to find support groups, etc, for pancreatic cancer, this is what I have come across so far:
- Whipples Warriors (NSW) - I'm yet to make contact
- Phone group support group through Cancer Council (although they thought Mum was not sick enough to participate in the pancreatic cancer one at this stage - that was good news for us : )
- Instead, through Cancer Council NSW, she has a phone chat one-on-one with someone else who had the surgery several years ago. Mum finds this a huge help.
- There are no specific groups that I have found in Brisbane where we are based. It would be great to find someone else in Brisbane.
- We aren't getting any sort of home support, although we don't know what to ask for! We have found this service useful https://www.pancare.org.au/1300-4-a-nurse/ They help develop a care plan for you and find professional contacts in your area.
- We are participating in the Forgotten Cancers project: http://www.forgottencancers.com.au/
- We are enrolling in the The Australian Familial Pancreatic Cancer Cohort (AFPaCC) because of possible genetic links: http://www.pancreaticcancer.net.au/
- These videos were useful http://www.cancercouncil.com.au/93494/b1000/pancreatic-cancer-28/pancreatic-cancer-support-videos/
There are definitely resources out there, but they are not that easy to find unless you trawl the internet for ages.
... View more
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.