Starting Chemo March 2015

Italychick

or poop shards, as in pooping shards of glass. Or feeling like it anyway.

Sharon, your hair is gorgeous, and it will be again. My daughter has hair like you, and I know how long it takes to grow back. You are still there, you just got a sucker punch, and have to get back up. We all do, and we all will!

Maryellen I have a bunch of stuff on Netflix to watch. I will send you the list of my shows. Eileen comes up with some great ones. What genres do you like?

Sloth, I'm a word game junkie. I'm trying to find the words in your post lol. Although sometimes before bed I have to quit because then I try to find words in my sleep and my mind races. I have an anagram one on my Kindle, and I am an addict. You have to scramble the letters and make words, but there is one word that uses all the letters and if you don't figure it out you have to start over. I suck at words that start with vowels like anemia.

Meme117

Theresa today was about 50 ml of fluid, more clear than yesterday.

Nice word search, go figure.

Sharon I will be looking them up.

Let me know what you think of this staff encounter at the hospital during my one night stay. My surgery was at 9:30, OR time was 11:30. Unexpected stay so get in my room about 5, private room with the bed, two chairs, tv etc. Husband is no where to be found and of course he has my purse with phone, nurse leaves him a message. So far all staff have been wonderful. Recovery nurse goes over my info with room nurse, Billie, she was ok not overly friendly at that moment. They leave and a nurse assistant comes in, Diana, she straightens my blankets and in comes another nurse assistant who plops down in a chair and begins a conversation with Diana about what snacks she wants as Ann is buying them, this goes on for a few minutes, never introduces herself or speaks to me. I say I want to go to bathroom so I'm unplugged (iv pole) and oxygen and circulation sock things. Now another girl comes in and leans against the dresser watching us, so I ask who she is and Diana says she's there to help. I say I'm more about privacy and would prefer the least amount of strangers come into my room. At that point the girl leaves, I come out of bathroom and Diana helps me to bed, hooks up Iv but not oxygen or circulation socks or ice packs. I'm shocked at the lack of professionalism. In walks nurse Billie because iv machine is now beeping. She fixes it and I ask her about the oxygen and circulation socks, which she hooks up. I tell her that her nurse assistants need additional training. I make a few comments but she doesn't ask any questions. I never see the two girls again and Diana is much nicer every time she comes in. Now I begin asking names as soon as anyone enters my room. I went on the hospital website today but can't find anywhere to file a complaint, what department do you think?

slothabouttown

Do you have a nurse navigator? You might start there. I received an email patient satisfaction survey after both my hospital stays. I thought that was pretty standard although I don't think they use the data from those surveys to address specific eemployee behaviors. You could contact the lead nurse on that floor. I learned that hospitals are just like any other workplace- about 30% of the employees carry the other 70%.

ninjamary

Sharon - we are hair twins! I only use(d) DevaCurl products on my hair. The gel she sells is out of this world! I quit shampooing years ago. Not sure if they sell it in your neck of the woods, but I highly recommend.

My hair growth below. I looks like a lot from this view, from the front no so much. Before I was dark brown with a little help from my stylist. Seems it was a LOT of help.

ninjamary

Mary Ellen - Agree with sloth. If you have a nurse navigator let her know. I can't believe someone came in and talked about snacks. What the hell? For the amount of money the hospital charges no one should be reminded to hook everything back up either.

I've received different care from nurses throughout this mess. Different personalities, but all have been professional. No one discussed their snacks, what other nurses were doing. Every once in awhile I had a trainee come in, but she was always supervised.

KBeee

Maryellen, definitely address it with nurse navigator and be honest on the survey if you get one. I sure hope you get those dang drains out soon. Mine stayed at 50 for a while and then suddenly dropped to about 10. It was not a gradual decrease.

Drains are so annoying. I knew I would have them in 2013, so so was prepared, but In February when I had my 2nd surgery, I woke up with one and was not anticipating it. My first words in the recovery room were, "hey, what's with the drain???!!!"

Sloth, That puzzle made my day!

Trvler

Maryellen- I had issues with a couple of people at the infusion center and I complained and never saw them again. I forget what the issue was, but I had an issue where I called the hospital administrator's office directly and I received a very quick reply. Darn, I wish I could remember why I called them now.

I guess 'weird white growth on tongue' was probably too big to fit the puzzle. Whoever made that puzzle is a little twisted.

slothabouttown

Mary Ellen, can you stream from Netflix or Amazon? I just started watching The Newsroom and love it. I used to be a documentary junkie but since BC it seems like I have a short attention span or something so I've been watching a lot of half hour comedies like Arrested Development and Parks and Rec. When I was recovering from surgery and in a painkiller fog I watched Big Love, the HBO drama series about polygamists. It's funny that I was drawn to that but it didn't involve a lot of yelling, explosions or gunfire so I think it was easy for me to alternately watch and sleep through. I'm trying to make my mind settle enough to pay attention to documentaries again, it's amazing how this effing sandwich can change so much about our bodies and minds isn't it?

Trvler

I have been watching a lot of The Middle reruns. I missed it the first time around.

wpmoon

I don't see "bloody noses" on that word search. I'm still suffering from them, even at almost 8 weeks PFC. Although that may be due to the weird weather the Bay Area is having right now.

Yeah, I guess I'll just know when it's right to tell someone about the BC. But it's a scary idea to have to at all.

Went to a support group for young women with cancer the other day, and one of the girl's story broke my heart. It was a very interesting group of women.

Allison: I'm doing okay, thanks for asking. And by "okay" I mean I'm tired all the time, I'm barely sleeping, so tired of the bloody noses, my armpit is itching like crazy from rads, and I wish the chemo weight would fall off on its own. But, my eyebrows and hair are slowly growing back in, so that makes me happy. Small victories!

All of your hair growth looks great to me! I'm so excited to see how fast it's coming in! Below is mine from yesterday.

ninjamary

Allison. My family and I crack up at that show. It's basically our life. The house is falling apart, the kids arguing, the husband in the show reminds me of my husband, but I'm not nearly as neurotic as the mom.

eheinrich

I'm at the lake hoping that we really do get to meet in person sometime. I can imagine sitting by the fire or watching the sunset swapping stories : )

Katy: I hope your move-in is going smoothly.

KBeee

whitney, I was hoping these bloody noses would disappear when chemo was done. I guess no such luck, eh? Sigh...

Hope everyone has a nice weekend.

Trvler

Wow, Whitney! You have great hair! I guess it doesn't make up for all the icky crap, huh? Or maybe it helps.

Eileen: I hope we can meet, too.

Mary: The Middle made me feel so much better about my screwed up family.

I didn't get a chance to tell you about this but the other night I went to take my daughter to the counselor we have been seeing. It was HER visit and the only woman in the waiting room had on a scarf. So I started a conversation with her, something the 'old' me never would have been able to do. She was really nice and we had a nice chat. She was one of those "I am only going to look at good stuff' people, which was ok. Everyone's different. But one interesting thing she told me about was a local support group that has a FB page. Turns out, it ISN'T just local. It's nationwide. So I wanted to tell you guys about it. It's called the Licorice Project. You can google it if you are interested. They do meets and things. I might check it out.

Jackbirdie

Sharon, your hair is so lovely!

Maryellen, hope your recovery is coming along. Thinking of you.

Move day was very hard. We didn't get it all but my bed is put together with clean sheets. Tutti and Jack are safe, ate their dinner, and seem relaxed. Jack is napping now, Tutti is exploring.

I also hope we fulfill our dream of meeting. I was hoping March 2016 would work in that everyone should be finished with tx, and the weather is great in Arrowhead in March! Not too hot?

I still have a list on my phone of all of you who wanted to do it. Seems so long ago now. But we are still here...still together..,,

Eileen, are we still invited? Or should we be looking at alternate locations as well? I know your personal situation is changing. Not sure if that affects this ornot.

Anyway, I'm going to try to take it a bit easy. Moving kicked my ass! Here's my view from my bed. From which I am not moving for a long time.

Italychick

Eileen, I'm supposed to be in Big Bear again the weekend of August 28. If you are up there, maybe we could meet for a coffee or something. We can drive over to Lake Arrowhead

Trvler

Congrats on your move, Katy! Take it easy. You deserve it. Beautiful view.

I am not sure I can make March 2016. But maybe.

Meme117

Sloth I've watched both Big Love and Newsroom, loved them both. And love the middle. Just watched Puss and Boots and now the Croods, nephew and son with me😀

Katy what a great view from your bed, glad you made it, get some rest as tomorrow is another day.

Whitney awesome hair!!

I had the morphine pump removed but still have drain. Have a bit of pain with movement but feeling better and tomorrow I'm gonna plan to go out for a walk. My arm bicep area is numb which is annoying and the surgery bra is beginning to bother. Looking forward to a good shower.

SueH58

Katy, how lovely to have patio doors from your bedroom to your beautiful yard. Helps to take the pain away. And there's Jack, right by your side. I'd say today you are blessed!

so-she-did

A very soothing spot to rest from moving.


Maryellen - it sounds like you are progressing in your healing. Glad you were able to have the morphine pump removed.

shaz101

katy, how gorgeous is that view. And I can't even imagine how much better it will be once you start gardening! As you know I am in for a get together! The only times I need to avoid is probably May through to August as that's my busiest work period.

Maryellen, it sounds like you're improving quickly. I hope you're walk goes well.

I went for a walk today. I did just over 5kms. So pleased with myself. Every improvement starts with small steps. I'm planning on running the city to bay (12km) again next year and walking the trailblazer (100km) I find it easier to stay motivated if I have a goal in mind.

I was just sent this photo from our walk today and I thought I'd share.

eheinrich

Katy: of course you all are still invited.

Theresa: unfortunately I have my surgery on the 27th, but next time you're up there let me know.

Jackbirdie

oh yippee!

Sharon says she'll make the trip from Australia! Maybe we should block some time. Does a weekend or weekdays matter to anyone? Does for example a 3 day weekend sound good?

I woke up very stiff and sore from doing nothing during the move. It is raining lightly but the birds are up.

There are several doves duking it out with some Jays for the field.

There are a couple of decorative (or so I thought) bird houses hanging from one of the trees. Inside are many baby birds. Yesterday momma bird was taking food back to her young 'uns. I think they wait until the doves and jays move on before they eat.

Jack is curled up on the bed. Tutti was very interested in looking outside but now she's back to playing with newspaper and packing material on the floor. I'm sure she thinks I put it there for her benefit!

Maryellen- still thinking of you and hope you feel well enough to get that walk in today.

Everyone else: thanks so much for your well wishes over the last few days. This move had meant so much to me. All of you understand that better than anyone else.

Hoping for good weekends, whether coming to the end of chemo (Sue-next week is last, Thursday?), recovering from it, dealing with SEs, recovering from surgery (indy- how are you?) or dealing with rads (sounds particularly difficult in combination with summer heat).

ninjamary

Katy - that view! Fantastic. Crisp, clean sheets on a bed...nothing is better.

Sharon - great pic and an awesome goal!

ninjamary

One week PFC (Of course I say post f'n chemo) and I feel like I am back to ME. Yesterday I hit our veggie garden to prepare for fall/winter dormancy. My husband just planted some tomato plants and basil and they pretty much failed (in my mind). I was drenched in sweat and it felt good. Now I'm researching how to deal with crab grass this fall & winter as I've decided I am going to take care of the back yard space that has the patio on it. What a mess. Like Sharon said above about goals and motivation. Yard goals in motion and tonight it's time to prepare my exercise goals. The swelling has finally subsided from my final chemo. I can get shoes on my feet! No excuses on not exercising.

Jackbirdie

Mary- so glad you are feeling so much better so soon! Have fun living life in your garden and making exercise goals

SueH58

Katy - that house is SOO perfect for you---even baby birds to welcome you!

And that darling Tutti! She certainly made the move well. She's such a trooper. And what can you say about our Jack???!!!

You are so sweet to remember all of our significant dates. My last chemo is Wednesday--can't wait for that to be done.

Hope you all have a good Sunday!

ksusan

Sharon, looking good! I think March/April should convene at Sharon's.

Jackbirdie

do you think Tutti is upset about the move?

Trvler

Tutti has a good life.