Scheduled Whipple Postponed

Hi stephanie845 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

That's great to read that you're feeling much better now but it must have been very disappointing for you that this chest infection has caused your operation to be delayed.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi

How frustrating to have this difficult diagnosis, have the plan on what to do, and then find you have to delay acting. When I was diagnosed with my tumour, many years ago now, I felt just the same - I just wanted it out - asap! Know that the time WILL pass (I reminded myself at times that every second was taking me a step closer to the tumour not being there any more), and I hope you can distract yourself by doing some gentle things that you enjoy. It's your body's chance to get fighting fit for the surgery, so maybe focus on that advantage. 

I know I just wanted to get rid of my tumour, but I have a dear friend who has a brain tumour that can't be removed. She has managed to get her thinking around to living alongside her cancer, rather than seeing it as a terrible enemy. This is something I admire and have thought I should have tried when I was waiting for my surgery. I don't know if it's something you feel you can try to do, but good luck with keeping yourself calm and distracted, and maybe put your focus into eating well and getting yourself fully recovered from your infection.

Good luck!

Thank you I will update my profile asap x

Thank you for your kind words. So up and down with emotions at the moment  it’s exhausting trying to behave normally around family and friends as I don’t want to upset them even more. They all think I’m strong but every night I cry myself to sleep. Another 2 weeks will be hard x

The emotions are a real roller-coaster, aren't they? If your journey pre-surgery is anything like mine, you'll find that each day is different. We didn't actually know if I'd make it to have my surgery because I was very poorly by the time I was diagnosed. By the end of my wait, I had kind of run out of panic emotion for something I couldn't control and just thought 'this is out of my hands, I can only do my best'. Be kind to yourself and do what you feel you need.

Everyone is different, but I found myself wanting to spend time with my close family and my most matter-of-fact friends - the ones who weren't going to collapse on me! It wasn't that I didn't love the other friends as much, just that I needed the ones with a tougher outer shell, because during that time of uncertainty before the surgery they helped me to feel stronger.

Don't forget that being alongside someone who is going through something tough like you are is hard because you want to help, and it can be difficult to know how to really help. I have felt privileged to be the person my nearest and dearest can share their innermost feelings with at a time like this, even though it hurts, so maybe you don't need to be as strong for everyone as you think you do. It's a painful time for everyone, and sharing that pain can feel helpful for everyone. You have something to cry about, so it should be ok to cry sometimes!!

And in the night, when I can't sleep because of worry, I've found those online hypnosis meditation things can be helpful. Michael Sealy has loads on youtube, and Michael Norman has a calming meditation that I have found useful:

duckduckgo.com/

You are a day closer to your surgery! x

Hello Stephanie854 

my name is Dee and I was diagnosed with Ampullary cancer in 08/24 I have been looking for people with this type of cancer and they’re not many of us out there. I had the whipple in 9/24 if you would like to know anything  about my journey I would be happy to talk. Blessings to you!

Hi Dee,

I was diagnosed in June 25 and had whipple 6 weeks ago. Recovery has been tough and emotional! Saw oncologist today and it suddenly became real. Will need 3 months of intensive chemotherapy as it was found in 1 lymph node. Was told there is high possibility of it coming back. Really scared for the future despite being told tumour was removed and chemo is more preventative

Hello, I hope things are going well, I know how difficult post  surgery is, and scary. I had 6 months of chemo and 1 clear scan so far will have another in  December. I was told about the risk of recurrence being high . It’s taken a year to feel almost normal except for the tiredness that just hangs on. Thank you for replying to my post I had about given up, it’s a long journey and still finding my way it’s so good to hear from someone who has been through it all.  I hope to hear more from you soon. 

I forgot to mention I too had one positive node also, and terrible neuropathy from the waist down and hands, no pain just numbness from chemo, I hope it doesn’t effect you the same way.

Hi Dee

thank you for replying having a bad few days just been prescribed diazepam by gp as the anxiety has suddenly kicked in very badly. Have first scan post op on Friday and really nervous. What chemo did you have ? I’m due to start FOLFIRINOX in a week or so and possibly more apprehensive about potential side effects more than anything else. I have no appetite at the moment as I’m so anxious which I’m worried about losing more weight- lost 4 stone and now weigh 8st 6 pound. Is chemo really bad ? How do you cope emotionally? Thought the worst was over with the whipple surgery but have read so many negative things about chemo side effects and I guess it’s not guaranteed to cure either. Trying to see a future is really hard xx you have come a long way so far and have one clear scan so I have my fingers crossed for the next one you have. Please keep in touch x