SCT scheduled

Eat eat eat!!! More weight going in means more coming out. Your appetite will be zero for a time post-transplant. You need the reserve. Exercise if you can, as stronger going in will also be stronger coming out. It will be a challenge to eat anything for a time, and it will be a challenge to walk on a flat floor. You will be pushed to eat, walk, eat, walk, eat and walk, take meds and drink until your teeth are floating. Get a walking stick or trekking poles.

Do you have to live within so-many minutes of the facility? We had to re-locate for 100 days and fortunately found an apt on short-term lease only 5 blocks away.

It sounds like you are doing very well indeed. I will be thinking of you and praying for you and your family in the coming weeks. Update when you feel up to it?

Hugs,

Rocquie

(Just FYI, my zero day was July 7, 2016, I was in the hospital for a total of 25 days and have been home for 7 weeks.  I’m 67.  Always very active but less so during this recovery.  I’m reminded frequently that everyone is different so I tried to keep my thoughts pretty generalized.  I, too, was told to expect 3 to 4 weeks as an in-patient then would have weekly follow ups for a month, then twice a month.  But after 2 weekly visits, my oncologist stretched the timing out to 3 weeks and now 6 weeks between visits.  It was never necessary for me to live close after the SCT and I’m about 2 hours from City of Hope.)

1. On the last hour of the last day of the high-dose chemo (when I had, I believe, Melphalen) they gave me cherry popsicles non-stop.  Goal was to keep mouth sores at bay and it worked.  Don’t know what your high dose chemicals will be but maybe this will make sense when you ask the nurse about it.

2. Take mints or other suckable candy for your zero day transplant.  The “cream corn” smell and mouth-taste is pretty yukky and the candy helps.

3. Be super-compliant about the recommended mouth care. 

4. I never threw up but the Neupogen made the big bones in my body ache (upper back, especially).  I think they may have also been achy because my stem cells were starting to make new bone marrow?  The in-patient Neupogen was given intravenously (no tummy shots) and since I’d forgotten to ask for “orders” for Claritin, I snuck some that I had in my purse and that did help.  Maybe you can ask for Claritin to be written into your orders so you don’t have to break the rules.

5. Walk as much as you can at the hospital while you’re feeling good.  Then try to do SOME walking even when you start feeling crappy (you will feel some level of crappy but it passes, so just know you can get through it)….it’s mostly super-tiredness and feeling de-conditioned.

6. Get as much sleep as you can – take advantage of any sleep aid they offer and anti-anxiety meds as well, taking them as often as allowed.

7.  Both during the last 10 days at the hospital and when you get home, make yourself eat.  Maybe you’ll have an appetite but mine didn’t show its face until I’d been home for almost 2 weeks.  I am still eating small amounts frequently but all food restrictions were removed on my last doctor visit;   ie; I can now eat fresh berries, uncooked veggies, salads (lettuce washed super well).  I’m still not eating salads at restaurants and am asking wait-staff to have the cook prepare my food fresh…nothing from under a heatlamp or warming tray.

8.  Despite warnings by nurses, docs and PA's that it could take 6 to 12 months to feel completely back to normal after an auto SCT, I waaay overestimated how quickly I’d be in perfectly fine fettle.  Thus I probably overdid.  I’ve been home just shy of 2 months and the process of recovery is not a straight line heading upward.  Now that I’m at the home-nearly-two month point, the fatigue is less overwhelming but still there and yet I’ve had some days recently when I felt nearly normal. 

9. Have a way to listen to music while in hospital.  Pandora and a wireless speaker will do.

10.  Ditto Netflix. You can probably hook it up to the TV in your room.  Doc Martin has, I think 6 surly seasons and will kill a lot of time.  Longmire is another good one.

11. Take a 500 - 550 piece jigsaw puzzle or two.  Another good time passer...hopefully there will be a place where you (and maybe other patients) can work on it.  Of course, when you're quarantined someone else will happily finish it for you.
12. If they have a Recreational Therapist, take advantage of what they have to offer. 
13. Of course Phys Therapy is really important but the PT's are enormously busy at most hospitals with lots of patients some of whom can barely walk.  Try to meet the PT/PTs as soon as possible after arriving and ask if she/he can do your  required "evaluation" while you walk the hospital floor together.,,that way you can do more focused exercising (for instance, stationary bike) even on your first actual appointment.

14. Consider taking your own clothes making sure your Hickman or other port is easy to get at.  My skin is real sensitive and hospital gowns are often scratchy not to mention well, they’re hospital gowns for gosh sakes.  Also, I feel less “ill” in my own stuff.  Of course the rule was only 1 day of wear then into the wash.  Thankfully my wonderful husband (who slept on the oh-so-comfy “chairbed” for 25 nights) was a willing clothes-washer and a laundromat was a short walk away on the campus. 

You’re going to do just fine!!  I’ll try to check the forum frequently starting midweek so be sure to update us all on how it’s going.  And try to come up with a better description than Cream Corn for that disturbing smell when getting your cells put back in J.

Strong thoughts always!!Paella