Whipple Procedure Advice
January 1, 2014 4:24 PM   Subscribe

After a much testing I found out I have pancreatic cancer at age 47. I am having the wipple procedure Monday. Any advice or suggestions for recovery. Thanks Hive.
posted by Hoosier Prospector to Health & Fitness (14 answers total) 6 users marked this as a favorite
Hi, I'm so sorry you are facing this. I don't know anything about pancreatic cancer or the Whipple procedure, but I have had numerous mega breast cancer surgeries myself, and I can tell you that recovery will probably be slower than what you hear from the docs. I learned this first hand and I'm glad I know it -- it saves me from being frustrated with myself for not "bouncing back," exactly on the timetable they've given. Give yourself plenty of time for all the firsts -- sitting up, feet on the floor, using the bathroom, etc. Having said that, once you get moving, keep moving. Your mental state will improve dramatically once you are ambulatory. Good luck, and hugs from me.
posted by thinkpiece at 5:28 PM on January 1

Can you let us know if you've ever had major surgery or a hospitalization before? I suspect there are not many around here who have had Whipples, but many (like thinkpiece and myself) who can share general advice about major surgery and recovery.
posted by telegraph at 5:40 PM on January 1

First of all, good luck! Kick its ass, HP.

I haven't had a whipple, however my nephrectomy was done midline, wide open, and was more involved than most due to numerous factors.

Things that helped: . Lots of pillows to sleep on, as I slept partially sitting up for some time. Easy things to read, due to pain meds I couldn't concentrate on books, but magazines were good. I also used my laptop, a lot.

Things the doctor won't tell you: It will take longer than you realize to be back to yourself. Amongst kidney cancer survivors, most of us say it took about a year to be ourselves again. Healing from a major surgery takes a lot out of you.

You will be tired. More than you think possible, as your body heals. On top of that the pain meds are sedating.

It isn't going to be just uncomfortable. It is going to hurt. I know everyone tries to downplay it, but knowing that made it easier for me to handle. Had I listened to some who downplayed it,I would've lost my mind. It hurts, but the doctors should give you plenty of pain meds to handle it.

Take the stool softener. Abdominal surgery messes with your bowels,so does anesthesia, and narcotics. Take it, believe me, it is necessary.

Carry a pillow with you, you hold it against your incision when you laugh or cough.
posted by SuzySmith at 6:16 PM on January 1

I had two brain surgeries in as months this year (brain tumor) and by far the worst part was facing my own mortality (I'm mid-30's and will be extremely lucky to see my mid-40's). So beyond the physical pain, be prepared for emotional and mental strain as well. Tell everyone you love them as often as possible, this really helped me cope.

While I can't speak to your particular surgery I can speak to going under anesthesia and having major surgery, YMMV and all that. I'm assuming you are scared so tangentially related information will be interesting if not specifically applicable/appropriate.

Hospital: I have no memory of the surgeries themselves and woke up relatively pain free both times but super woozy. I was really thirsty after waking up but upon taking even tiny sips of water I immediately dry heaved. Start with ice chips or those spongy swabs if they offer you anything. Be prepared for your throat to hurt (it might not, after my second surgery I didn't have any pain, so really depends on the staff) and you might also have some heartburn. The care from the nurses will vary but usually the ICU nurses are the best. They may wake you up every four hours to administer medicines and check vitals and only some nurses can do this without waking you up. Be vocal about what's going on in terms of how you are feeling and don't try to be a hero in terms of pain. Your pain might be sign of other problems and it is much easier to manage if you stay ahead of it. If you have any questions ask them, ask them to clarify if you don't understand the answer. Knowing why is good path to ensuring the information sticks. Be prepared to say your full name and birthdate a lot.

Home: Strongly agree with gathering or buying an obscene amount of pillows. If you only have a couple pairs of PJs or sleep in your normal clothes, you'll want at least 4 sets of comfy PJs (plan for the area around the incision being super sensitive when looking to buy new PJs, maybe get something more like a nightgown?). If you can, get someone to clean your house as much as possible while you are at the hospital. You might also want to ask that person to go grocery shopping (ask your doctors about dietary restrictions and make sure those are understood and observed) and do laundry (even those brand new PJs and pillow cases!) around the same time. You will have healing wounds that will be prone to infection and don't want to make the bacteria's job easier. Other than that there are little details that really go a long way like buying paper plates, paper bowls, and plastic silverware so you don't have to spend time washing dishes for a few months. Buying a non-slip bathmat if you don't already have one is a good idea, too. Get a nightlight for nighttime bathroom visits. If you have pets, keep them out of the house for a few weeks at least, maybe more.

Recovery: You will have good days and bad days. Celebrate the good days, and don't let the bad days get you down, you'll get it next time. Get Netflix streaming if you don't already have it. All those movies you've wanted to watch? Now's the time. Don't be too hard on yourself.

Also strongly agree with giving yourself more time than you think you will need, take everything one day at a time and try to find a good thing to say about each day. Be easy on yourself and those around you.
posted by Ms.JaneDoe at 7:43 PM on January 1 [5 favorites]

So sorry to hear about this. I have worked as a nurse taking care hundreds of post-Whipple patients, and my best advice would be: follow your providers' (RN/MD) advice, especially about things like using the incentive spirometer, drinking enough water, and getting up and walking walking walking. A huge amount of post-surgical pain is due to built up gas (also take those stool softeners and gas-reducers!), and one of the most common complications (that's easily avoidable) is pneumonia. As others above have recommended, pillows for bracing coughs and laughs are helpful. The pain is very real, and it's much easier to take meds to stay ahead of your pain rather than chasing it later.

Major surgeries require a recalibration of our thresholds and parameters, in a way we perhaps haven't previously imagined. Little things like walking down the hall, using the incentive spirometer, and spending the night at home are actually really big victories. Be proud of yourself. And if things don't happen as you plan or wish, be gentle with yourself, too.

Wishing you strength.
posted by stillmoving at 9:43 PM on January 1 [5 favorites]

Ask friends to help by visiting and helping you with food, beverages, walking,running any errands. Try to eat healthy food, and take really good care of yourself. Good luck.
posted by theora55 at 10:00 PM on January 1

It really is just amazing how fatiguing surgical recovery is. (Saying that an ex-nurse, a family member, and a patient, although my cancer surgery was pretty minor compared to a Whipple.) It's not just trying to get the energy up to do things, it's the way even minor activity, so minor you wouldn't previously have considered it activity, requires compensatory napping.

Even so, the more you can do for yourself and the earlier you can do it, the better off you'll be in the long run. Assuming yours is an open (non-laparoscopic) surgery, start using the incentive spirometer round-the-clock as soon as you get it, even if it feels like it's going to kill you. (The spirometer is a doodad you breathe forcefully into to keep your lungs clear. It does not feel nice to breathe deeply with an abdominal incision. You can "splint" the incision with a pillow - although the wound won't open just from deep breathing, and the pillow wouldn't stop it if it did, I'm told it feels a bit better.)

If you don't get much from the hivemind, maybe try the one-on-one support from the Pancreatic Cancer Action Network? I found the site-specific cancer groups more helpful than the general ones like ACS's I Can Cope.

Best of luck with the surgery and recovery.
posted by gingerest at 10:02 PM on January 1

I've had two surgeries that are the little sisters of the Whipple....15 years apart.

My mother had a Whipple.

Stillmoving gives the best advice. If you've never had a big surgery, big pain can be a shock. You shouldn't wake up in too much pain, if you do, your anaesthetist has made a mistake. Complain about all pain you can't carry a conversation through. Although conversations will be a long way off. Mum was sent straight to intensive care after her surgery and actually had a really amazing recovery. She didn't follow all the healing advice her care team gave her, so she had some hiccoughs unrelated to the Whipple itself.

My other advice is to be brutally frank with your doctors about your drinking, smoking, pot use, depression, dietary habits as this will enable the to factor all this in. Now is not a time to be coy about any of that. My mother didn't mention her alcoholism and lied about her smoking. This was a VERY bad decision on her part and what was her undoing.

Another thing is to kind of let go of the inevitable indignities. All sorts of things will happen with all sorts of people around...and while you shouldn't allow people to insult your dignity....embarrassing stuff will happen and if possible, it's easier to let it go and focus on getting well, getting home and all the good things you'll like to do when you're strong enough.

And accepted wisdom now says that keeping a lower level of pain meds in your blood stream, constantly....instead of letting it wear off then taking another, higher, dose, is the best policy. Which means..when you're a week or so post op and someone prescribes you acetaminophen/paracetamol, they're not being stingy bastards.... it will really, really work....BUT you must take it every four hours ( or as they tell you). If you let your blood levels of this kind of drug drop, they don't do much at all. (Newish science, and unbelievable to most lay folk.)

Be gentle with yourself, this is a bloody big surgery but you can get through it. My totally unfit 66 year old mum did.

(Also...fucking hell, I'm so sorry you're going through this. It sucks. It's scary. But we're all here in your corner. Massive hugs.)
posted by taff at 10:12 PM on January 1 [1 favorite]

All the good stuff's already been said, but I want to make a comment about the pillow. Don't use a regular bed pillow - they're too big and too soft. I used one of those small travel pillows - think I got it at K-Mart. It was small and firm and easy to hold onto and press against my abdomen with one hand while I reached for the headboard or chair arm with the other hand to help stand up, etc. If you're a large man and that pillow is too small, perhaps a small sofa pillow might work best, but it needs to be more firm than a bed pillow and something you can easily grip and move around. When you cough or when you're standing up or sitting down, press it against your incision - it really helped me a lot.

And like the others have said - and it can't be said too often - don't try to avoid the pain meds. Take them faithfully whether you're actually having any significant pain or not at the moment; if you wait until the pain arrives, it will take twice as much medicine to knock it down again.

Wishing you the very best surgical result and a thorough and speedy recovery. And I send you a big hug, too.
posted by aryma at 12:55 AM on January 2

Thanks for all the advice and kind words. I will post a follow-up in a few weeks to let everyone know how it went.
posted by Hoosier Prospector at 9:04 AM on January 2 [7 favorites]

After two rounds of abdominal surgery, I also recommend that you set your alarm for pain meds through the night.

It will interrupt your sleep a little, but on balance it's better than waking up in discomfort and pain and waiting for the meds to kick in. I kept the pills and a glass of milk by my bed so I could fumble for them when the alarm went off and go straight back to sleep.

Good luck with your surgery and recovery.
posted by vickyverky at 9:56 AM on January 2

I sent you a MeMail about this.

Good luck with the surgery!
posted by schnee at 10:25 AM on January 2

Just popping in to say luck and hugs for tomorrow. Still thinking of you.
posted by taff at 11:36 PM on January 4

Coming back in the thread to say I've been thinking about you and hoping for the best.
posted by schnee at 10:29 AM on January 30 [1 favorite]

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