Coping after Whipples then having chemo - pancreatic cancer

[ZACES]

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. Cheers Zoe

[kj]

Zoe I had a Whipple in 2010 followed by gemzar I understand what your mum is experiencing,I had severe pain for a long period,but you do get relief I find it hard to comprehend someone running 5 ks so soon after surgery,it has taken me a long time to get used to the new me post surgery,pain is normal with this surgery and depression can surface, the doubts from the mind of what she is going through,chemo is another thing to cope with,we all have different effects from it some breeze through others do not I hope she breezes .I have spoken with a few other Whipple surgery friends the main thing is to try and be active by just walking or trying small tasks,but listen to her body and its needs,I found during chemo I tolerated scrambled eggs on toast to eat.My cancer was in the head,I was told I was terminal during chemo but I am in remission and living years beyond my prognosis,while there is life there is hope.i am in my late sixties. kj

[ZACES]

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.

[kj]

I am well thank you!If I can be of assistance In answering questions regarding Whipple and recovery please contact me ,I still remember it like yesterday. kj

[iLIV]

"Greetings to you Zoe & to you all" here; whom are reading this post & thread :) Trust all had a good long weekend Easter break (2016). Thank you so much for sharing your journey & experiences with us here dearest. My heartfelt wishes & prayers to your mother Zoe. Am so happy I have found this website of 'Cancer Connections' through the Cancer Council. Please pass on to your mother of my thoughts & from my dearest friend whom is also just finished his 1st round of chemo last week (24th March 2016). My friend urgently needs to meet others whom are going through the same as him RE of pancreatic cancer. I see you & your mother are seeking the same. My friend is 60 years old also. Please read my 'profile' to also my recent & 1st post on the 'Introductions' forum. I will contact you privately now. Hope to hear from you soon; to hopefully arrange a meeting with you & your mother. Love, Light & Peace to you; to your mother & to you ALL here as well. Sincerely, Steve 🙂 xox

[Valerie1]

Hi Zaces,

I have just read your blog about your mum.  I am 21 days post a Whipple procedure and finding it difficult to find a support group in Brisbane.  I see you also live in Brisbane.  Have you had any luck?