Getting my port today

[Mary Jo]

Hi Kathy,

I remember while I was going through chemo and the waiting that was involved EVERYTIME. However, that being said................although, yes, I wished I could have gotten in and out of their.............there were always reasons for the waiting. Chemo infusions taking longer than planned, finding veins, adverse reactions, and a litany of other reasons why things take longer - doctors being behind - lab results not coming quick enough - etc. etc. etc. I remember one time looking around the waiting room and seeing some real sick people and saying to myself..........."Self, pray for these people around you and be thankful you are doing alright and able to sit out here and wait." It helped me patiently wait (well maybe on the outside anyway ) and it gave me something constructive to do with my time. So I would pray and visit with others who were waiting. We would share with each other and become friends throughout all of our waiting.

Now, as far as the snippy nurse goes..................SHE would have gotten a piece of mind and there is absolutely NO excuse for that.

Hope that helps put it all into a little better perspective for you. Prayers for continued chemo/herceptin success.

Love & hugs,

Mary Jo

[swimangel72]

Thank you Terri and Mary Jo - I did feel quite humbled in the company of so many sick people and did strike up a conversation with a few of them. It broke my heart to see so many different people there - one very elderly woman barely holding her head up in a wheel-chair then a very young, fit, pretty woman holding hands with a little 3year old boy - and I prayed for both of them! My own condition is nothing in comparison......and my own impatience is due mostly because I get nervous making my husband wait for me. I'm hoping by having my treatment at 8am next time it'll move along more quickly. I was even tempted to drive myself to treatments because immediately afterwards I felt fine.....but by the time we got home, I was a bit dizzy and tired, so I was happy I didn't drive. Today I'm still very tired with a headache - but a nice nap and some tylenol took care of it.

As for the snippy nurse - I realize you attract more flies with honey so I'm going to bring a box of Dunkin Munchkins with me next time and see if that doesn't help to sweeten her up a bit! (I heard from another nurse that the "snip" loves DD munchkins!) So thanks again ladies for all your kind thoughts and prayers - and mine are coming your way too!

[Bill]

Hello, Ladies. I'm glad you liked the prayer. Swimmee, your post just reminded me of the thoughts I had when I first wrote it. Thanks for your kind words. And you too, Terry. Marejo basically said everything else I was going to say. "Self, ..." lol. I'm sorry about the snippetty nurse, she sounds unprofessional, but maybe she was just having a bad day. It sounds like you have a good idea about the DDM's! Nikki's nurses were all great, and we'd bring them little treats. Actually, I talked to a few last week, and told them I was going to stop by and bring them some "treats". They said bring fruit, and I said okay. I swung by the store and bought as many dark chocolate candy bars stuffed with almonds, blueberries, and cranberries as I could afford and then made a bee-line for the infusion room. I got there and hugs were all exchanged and then I handed the head nurse my bag, "oh, yeah, here's your fruit". The nurses all gathered around and looked in the bag and then looked at me like I was a bad boy or something, but then they all seemed really happy. Women. Go figure.

[swimangel72]

Thank you Bill - wish I had some of that dark chocolate candy right now! As my 82-year-old diabetic grandmother used to say when she'd cut herself a slice of chocolate cake, "Life isn't worth living without a bit of sweet!"

[swimangel72]

An update - my oncologist called me and was so encouraging to me on the phone, that I decided to drop my hard feelings. I didn't bring any treats to his office on my 3rd visit last week, but it wouldn't have mattered - I had a different nurse attend to me and she was lovely! Unfortunately, she said that my port incision got infected so she had to give me the infusion through my arm. The port incision never felt right to me - and the skin was turning red - so the oncologist put me on an antibiotic. The next day I saw my PS and he put me on a totally different, much stronger antibiotic.....and he still won't let me return to work. I was hoping to return to work tomorrow - but now I'm happy I can't because I've been soooo tired these past few days and my arms feel so heavy and useless - I can't call them muscle pains ......I never felt anything like this in my life. Must be a side effect - but what? Some kind of neuropathy? I could barely hold a dinner dish tonight for fear I'd drop it! If it doesn't get better soon, I'll be calling my oncologist......sigh.....some days I feel like I take 5 steps forward then 6 steps backwards.

[Terri B]

Kathy, I'm following you and your progress and it seems you are having a bit of bad luck with infections! I hope and pray it gets better for you!

I got my port placed Friday, and so far, everything seems okay. The steri-strips are still in place. My surgeon said to shower normally, and the strips will pretty much fall off on their own.

I start chemo on the 2nd. I'm VERY nervous about it for the very reason you are suffering. The fatigue. I can't imagine not having motivation or energy to move. That scares me. But, i'm sure i'll find a way to deal with it.

Good luck to you. I'll be cheering for you!

[mts]

Glad you are doing well Swimeee-
I know the waitimg room scenario all too well. I can only say those that are not in our shoes really don't get it. Compassion is a very rare commodity. I did however buy a box of donuts at my second infusion and after that- I was always treated like an A lister.

maria

[swimangel72]

Thanks Maria - I may still get that box of donuts! Or maybe a bag of breakfast muffins....mmmm.....corn muffins, my favorite!

And thanks Terri - I'll be sending you good vibes and prayers for your first chemo treatment......I bet you'll be fine, at least for the first few days. I've tried not to think about SEs too much because I wanted to remain upbeat and positive.....it seems much easier in the mornings for me. Perhaps I just did too much around the yard yesterday - my arms still feel a bit "weird" but I'm definitely not as tired.

I look in the mirror in the morning, getting less startled by my Frankenboob and tummy and think to myself - this is just the new "me" I just have to get used to how I look and feel........and as soon as I can, I need to get back on my Weight Watchers diet and back in the pool....I know I'll feel much better if I can drop a few pounds. Even if I don't feel better physically - psychologically seeing the weight come off will do WONDERS for my outlook.

[Terri B]

You are preaching to the choir, Sister!!!

I'm so fat right now that when i run up and down the stairs, my fat gives me a round of applause!! (I know, i know don't quit your day job, right?)

Just all the stress of all this waiting caused me to eat like a hog. My stomach felt like my throat had be cut!

I can't wait to lose some of this lard. Maybe when i'm into a routine, and stuff feels a little more "normal" (hah).

[CindyE]

Just wanted to check in Kathy and say that I have been praying for you. I hope the port gets better soon. I know the one in my arm is basically healed up but still feels sore to the touch. I think our bodies just need time to adapt to this foreign object and hopefully it will settle down soon. Also don't over do it. I know after my first chemo, I did too much and got really fatigued. Just rest and take it slow. Best wishes,

Cindy

[Ruth]

Use the numbing cream (lidocaine - 4%) with a big glob of it. I asked my pharmacist for some or get a prescription for it. Cut a square piece of saran wrap (press n seal is best) over the cream at least 30 minutes before anticipated stick and then it should be numb. You'll feel the punch of the needle but no pain. If you don't wrap it completely with no air getting in- it won't sufficiently numb it.

It seemed that I had a longer wait time at the beginning of chemo treatments because they have alloted more time to you anyway. I would give your office another few visits before you bail on them...especially if you like your doctor. When I first started it was an all day affair but by the time it was only herceptin I was in and out usually under 2 hours. It is hard sometimes but the office staff has bad days too. A lot of the time they are over booked and that makes everyone unhappy...including the front liners. I came to know all of them so well. It was a blessing to have them as you go on this long journey of going to the office which seemed to be ALL THE TIME :-). As a hint - don't schedule on Mondays for treatment. They are ALWAYS the busiest. Wednesday is usually the best and you feel worse on Friday and can recover by Sunday.

Hugs ~ Ruth

[Ruth]

I just wanted to add some more thoughts to this thread :-). Oncology nurses (well, all nurses) are true little angels. She could have been snippy because she knows how important each patient gets quality care, not being rushed, nor have to wait so long in waiting room! It is such a hard job for them as it is a hard job for us. From my humble experience I learned a great deal from them and it forever changed my view of their jobs. One of my nurses unofficially adopted me as her daughter and years later I still have another Mom. Does your office have a healing garden? Giving a flowering plant is such a nice gift or donation to a fund for uninsured patients in the nurses name. I bring this up since I really didn't have a nurse that wasn't on a diet!! They receive such great food gifts from patients (and yes, I brought them too!) but they also have food from the pharmacutical companies that supply their break rooms with catered lunches, cakes, cookies and dinners. I was AMAZED at how much they got. Two of my nurses refused to eat anything from the drug companies since they felt it was money spent on the wrong thing. They wanted more donations to the uninsured. But that is a whole other topic....

Bill....I don't think a dieting nurse would EVER be unhappy with chocolate...hee hee. I subtract chocolate from the list of treats! Another thing...my office had a refrigerator/freezer and you can ask if popsicles could be brought in for patients. Lots of people don't know how much a popsicle can help prevent mouth sores to suck on one during the adriamycin/cytoxin infusion. Nurses don't always tell them about it since they can't give them one if they don't have any.


I hope it all goes well for you ladies that are just starting on this journey. Please ask me anything that you think of to help you. I took all of my memories with me from that time, the good and the not so good but I hold them dear.

Hugs ~ Ruth

[swimangel72]

Cindy I'm happy your arm-port is feeling better. I was thinking about you and wondering how it would feel to get the arm-port, but I was afraid since it's my only good arm. But at least you won't have a visible scar on your chest, right?

Thanks for the advice Ruth......I think the flowering plant gift idea to raise money for uninsured patients is fantastic! I'll ask about it at my next visit.....and I'll also try to be more understanding of the nurse's difficult job (usually I'm very empathetic - but this whole process has made me more of a grouch!) I'm so happy to have found this web site where I can vent!

[Sheila]

Swimmee
I so understand the waiting game....and I have been doing it for 4 1/2 years...I live 75 miles away from the Hospital/Chemo Center, and with Chicago traffic, it is an all day affair. I sat in the waiting room last time, an elderly gentleman said to me..."I absolutely hate coming here every 2 weeks." I looked at him and told him I felt the same way, but it beats the alternative! We both laughed....as far as those cranky nurses go...I also had one nurse who was not overly friendly...borderline rude and sarcastic actually...then one day she overheard me talking about my 2 Labs, Sophie and Sadie....she was suddenly my best friend...couldn't do enough for me...the next time i came for treatment, she had purchased dog bones for my dogs..(she also has labs)....Lesson Learned: I tell everyone I see waiting for their chemo, to say that they have Labradors ...talk about them, heck get some fake pics or borrow some...she'll be so busy being nice, she won't have time to be rude!!!!

[abitjaded]

Kathy and Terri,

I needed the freezing spray on my port. I'm a skinny bitch (can I use that word here?) and my port was huge, stuck out of my chest like a stack of quarters. It was sensitive for the first six months. Could not even sleep on my side (or the other side, what fun).

The nurses got really good at prepping the area, then spraying and a quick stick. Without the spray I would cry each time. Did not mean too, big tears of self pity would just start rolling. But after a while I got tough and didn't need the spray.

But I loved the port after months of two-three-four tries on the same hand and arm.

Love that Lidocaine idea.

Even those that diet, sneak. Food bribes always work. See's chocolates were immensly popular even though everyone wouldn't eat them. Ha!

Yuk, cannot imagine being in a waiting room for two hours if you feel lousy. Ask the nurses for a time frame when you get infusions. Depending on what they are shoving in it can go very fast or must be slow. They will know just how much time it takes. And as everyone learns, go for the first appointment in the morning. Ask for the slowest day of the week.

Carla

[abitjaded]

The anticipation is the worst. Once the whole thing starts, you'll know what to deal with. And well, it isn't exactly routine, but tolerable and you'll have lots of company. Once I started chemo, the lonliness and fear got so much better, just because you see the same nurses and patients everytime, and you feel you have support and community. I felt no one was in charge until I met the chemo nurses.

Carla

[Ruth]

Kathy,

Please don't apologize for being grouchy. We all have been affected by our nerves and still can be that way! I remember being very sensitive to my Dr's expressions. If he looked at the floor I'd read something into it, if he'd pause before he said anything, I'd read something into it. I was sometimes my own worst enemy because fear was ever constant those first two years. I'd try to sneak peaks in my file as he was writing to see if he wrote something that he didn't tell me. I'd thought I was finally over it until last time I went for my 6 month check-up. I guess I was way too nervous/upset that day and my blood pressure went WAY up. I have never had high blood pressure. He wasn't concerned, gave me a big hug and told me he thought it was white coat syndrome. He said I looked great and to see him in 6 months. What did I do? Go straight to CVS and take my blood pressure 15 times...LOL

[swimangel72]

Thanks again for your support everyone. Wednesday I had my fourth infusion and they still couldn't use the port because it was still open, oozy and a bit red. So yesterday my PS looked it over and said it's not really infected but he would clean it up and put in a couple of stitches ("on the house" - he's so generous, fixing someone else's mistake.) After cleaning it, he held up a tweezer and showed me a thick curly brown thread and said, "THIS is why your port incision wouldn't heal! Something was left in there!" I was so grossed out - and feel so upset with the interventional radiologist who put it in! I'm not sure how to go about complaining about him - possibly I'll call my oncologist and ask him (he referred me to this radiologist). Anyway, I hope the incision will heal up quickly now so they can use the port for my next infusion in two weeks.

[Terri B]

Dang, girl! I feel so bad for you!

They used my port for my first chemo on Monday. No spray, no lidocaine, just a poke! So much better than poking around for vein!! I was surprised at how easy it was!

I was reading back on this thread and you talked about your "frankenboob". I had to LOL on that one. I have two "franks" and the funny thing is, I'm getting them pumped up bigger and bigger every week! Under a shirt, it looks like i have some boobs, but take the shirt off, and EEEK! I still tell my 14 year to close her eyes because i don't want to give her nightmares! )

Hang in there Kathy. I will be praying for you!

[swimangel72]

Thanks Terri - and I like your new picture - the hat is cool - what team is it?