Sharing resources for people newly diagnosed

loripeck

When I was first diagnosed I felt like a deer in the headlights.  Total shock.  I worked hard to research things that would be helpful to me from surgery forward.  Just wanted to share some things that helped me and maybe others will follow with their feedback to make it easier on newly diagnosed woment going through the same.  I had a lumpectomy and radiation (fortunately no chemo).

AFTER SURGERY

Open front bras, gowns, shirts (for easy on and off)

Small pillow (helps to put under your arm on the car ride home from the hospital and after you get home while you're recovering)

Pillow wedge/s (especially if you're a stomach sleeper.  It keep syou from rolling over in the middle of the night)

Bandages and surgical tape (to initially cover the incision and the surgical tape hurts less than a band-aid like bandage)

Tylenol (This is what they recommend post surgery)..I was able to get by on 1 pain pill the day I came home but weened myself immediately and was able to use Tylenol going forward to manage the residual pain.

Small round fabric covered cold gel packs (these are soft and small enough to slip inside your bra to help with swelling.  I purchased some that are round and made for kids.  They are from a brand called Mom's Best and had cute monster faces on them since they are made for kids but they worked quite well.  Get at least two or three so you always have a cold one available)

RADIATION

Calendula Creme by Boiron(Calendula comes from the marigold plant and has healing properties that work as well as aloe for burns. I prefered the cream because my skin absorbed it better than gel.  Aloe tends to be a gel and melt off your skin before it absorbs because your skin is warm after radiation).

 Aquaphor (for irritation)

Hydrocortisone (for itchy skin)

CHEMO...I didn't have it but I heard these things are helpful

Mouth Kote spraay or drops (moisture to help with dry mouth)

Queasy drops and pops (anti-nausea)

Disposable barf bags (self explanatory)

Ginger Tea (anti nausea and extra energy)

Lap throw and knit hat (helps to keep you warm in general or while getting chemo)

GENERAL

Supplements (talk to your doc and/or naturopath

Glass water bottles (drink lots of fluids)

Mineral Spray like Evian (for the face...feels divine on dehydrated skin)

Non slip slip ons or socks

Gentle yoga or some form of excercise (will really help your energy levels)

There may be things I missed or other brands that other people liked better.  I'm interested to hear what helped others and I hope this helps some of you.

 

Apaugh

thanks...

there are tons of helpful hints on here just look around, without these pink ladies, I just know I would of been a worse mess than I am.

Rague

We are each so different!

What 'works' for one (or possibly many) does not 'work' for all of us and we should not expect to experiences that some do. There are also very different TX plans for the different BC types (DCIS/IDC/ILC/IBC), ER/PR HER2 status, genetic that,come into play..   For me being IBC Stage IIIC, TX was different than most with the same DX. 

I did do neoadjuvant chemo (4 DD A/C) but also adjuvant chemo (12 weekly Taxol).  Not a LX but. UMX.

'AFTER SURGERY'

After UMX - wore all my usual clothes with no problems.   I had read that had to have button/zipper shirts to wear post surgery so got one.  I walked out of the hospital after putting on the same pull on turtleneck and sweatshirt that I had worn in the day before (my cold weather 'uniform').  Just that I was not going to allow what I had been told by some that I was not still the same person/woman who had walked in the day before!  

Did not have a pillow on ride home - no discomfort at all.  I was driving the next day.

No problems sleeping.

No bandages needed.  I was 'strapped down' so was 'flat as a flitter' til I saw Surgeon.  He had used surgical glue so the incision,was,sealed and no external sutures.  Had 2 drains - one removed at 10 days, other removed at 4 weeks - developed a seromona after it was removed.

RADIATION

I used the creams that Dr gave me and aquaphor throughout Rads and had no issues.  However, the day after last rad. (25th) my burns started showing up.  Have the 'nice scars' to prove it.  That was early March and the last scabs came off on June 29.  It was Domeboro soaks.

CHEMO

DD A/C did not slow me down at all.   Taxol was nasty - completely/utterly EXHAUSTED through it.  For some, A/C is nasty and Taxol is nicer.  NO nausea at all with either.

 

Bottom line is we are each unique in all ways!  No one else will have the same experiences just as no one else will experience exactly that same as anyone else with their life,  similar some times - but never exactly the same completely.  It is real easy to fall into the 'pit' that all deal with what we individually dealt with is what all will - WRONG!    We each enter the 'Battle' as very unique women (or men to a smaller number).

loripeck

Thank you for sharing

Rague, Thank you for sharing.  I did not mean to imply that every situation would be like mine.  I really appreciate your feedback and perspective and agree that every experience is unique. Perhaps I could have worded my suggestions different in order not to confuse anyone. I think there's value in sharing (and I hope many others do as well) because there may be some that identify with what I went through, what you went through etc...and some of the things that helped us, might help them.  It is up to each of us to research and find what works for our specific situation.

HapB

Thanks

thank you for this information. I am the deer in the headlights right now.