Stupid comments ....
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Meadow: Hi Betty! **waving** I am looking better in loungewear as we speak! Supersoft leggings, supersoft tunic top, and over it a fuzzy purple polka-dotted robe sent to me by one of my bco sisters! Love that gap supersoft line, it is the best.
I continue to be shocked for those of us who have had 'friends' who never came around in our time of need. Even though it has happened to me, I am shocked. I want you to know that I would never do that to any of you. I would come around! XXX
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Canuck Mom - lovely post, reflecting a lovely woman. Thank you for taking to time to put your thoughts in writing.
Bride, I can't imagine how much restraint it must have taken to walk out of there without losing it. How completely, utterly unacceptable. 'Sod off' is even a bit mild, in my opinion. (A phrase I knew, unlike a couple others involving punches that are thrown around here...) Is there anyone else in the practice that you could see? I can't imaging all her patients are simply going to be left hanging until July.
That's definitely a complication that NO one needs.
Daisy - hope your friend is pulling through
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Daisylover, I smiled at the story of your dear friend's "we will be ok", my college roomie who is the most precious woman I know, was just like her! She even wanted to get matching tattoos while I was in treatment to show her solidarity for "fighting the beast"! We neither one have tats by the way, still dont. I spent the early days of my treatment getting her thru it!
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*laughing* Oh Daisy!
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I still want to know what a "survivorship meeting" is. Someone, please tell me!!!!! My MO has been telling me he wants me to have one. With who?? I have lived this nightmare and would prefer not to listen to someone tell ME what I have been through and then sit there and ask me if I am ok. I am positive they would not like my answers. If they want to know if I am ok, maybe they should ask my husband, bless his heart. He has endured the thought of me dying, the late night crying fits, the sleepness nights, the screams of losing my hair, the outbursts in stores when people look at me wrong and poor guy has held me and loved me the whole way and tells me we will get through this.
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No Matter What - My understanding is that a survivorship appointment is focused on organizing your ongoing care, discussing changes/issues to which you should be alert, health/fitness issues that may crop up in the wake of treatment, time frames for follow up such as mammos., medication checks, etc.
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Yes I agree, my survivorship appointment focused on the future, what to watch for, how often I would be back for check ups, when I would get scans for follow care, etc. also reviewed my chart, like an extended version of the appointments I had been having. I liked it as I knew I was moving on!
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Talking about outbursts in stores ..... I spent ages finding a sports bra type thing that would give me some chest wall compression on my flat side, while offering adequate support to my large uniboob. I was feeling particularly deformed and so demoralized by the time I found one that I thought would do .... When I went to pay for it, the checkout girl said "do you want a bag for that?" .... And I retorted "No, I want to take it outside just like this and wave it around the parking lot so everyone can see what horrible undergarments I have just bought!"
My husband almost had to slap me!
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Nomatterwjat, Hopeful, and Meadow, thanks for asking and answering that question! That doesn't sound so bad now that I understand. I think they could certainly come up with a better name though! Like a "continuity of care" meeting. Focusing on the fact that you will be cared for, they are still looking out foryou. We are so much more than "survivors ". It's sounded scary and insensitive and I was already shadow sucker punching in the mirror!
A new hat! Just arrived from an old and dear friend in Switzerland. Just in time, and she didn't forget theSwiss Chicolates!
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Meadow and Daisylover, I have friends like that. I spend hours trying to assure them I am fine, and I am pretty sure that I am the one with cancer. Oh well, it helps them which in turn helps me, when they go home!
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and Morwenna. Been there. Not exactly the same, I hate shopping anyway. I got the cheapest prosthesis type bra on Amazon and a nerf ball. Cut on the diameter, it's about a perfect B! The whole biz pisses me off.
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Morwenna, LOL I am all for saving a few trees at stores and going bagless....but what right-minded clerk would suggest you would want to tote your undergarments from the store without a bag???
I hope you have since found undergarments that are comfy and correct for you.
MsP
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I'm about to ask a stupid question of my own..... My BFF is on her way from CA to be with me for my first chemo, the head shave, and a couple days after. Is there anything I need to do to protect her or make her comfortable while she is here? I noted the close the toilet before flushing thing. I live in a tiny little house (abt 600 SF) with just one small bathroom.
I guess the proper thing would be to start a new thread, but I've kinda gotten comfortable with this subversive sub-group hah
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Jackbirdie, you are so sweet to worry about your friend. I am sure your friend is coming to protect YOU and make YOU comfortable. I would get some clorox wipes for the toilet and the sinks to protect you both....and then I would get a case of some really good wine. I hope you have a lovely time and you get through your treatment with no side effects.
Love, MsP
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Jackbirdie - I think your recharacterization of the appt. has a lot of merit. What would happen if we all just started using that term instead of the other? Or suggested it to our MOs?
Thinking of you as you start the T/C. Hope it does a LOT for you without any permanent side effects.
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bobo, texture is the key to happiness - When I shop for clothes for my family I touch the fabric to check for softness before considering the style... I am pretty sure that salespeople think that I am daft.
Hopeful, thankfully, my friend is hanging in there!
Canuck Mom, so true - it's very easy to say the wrong thing or be super sensitive. My Dad can't say "cancer". He will talk about why/how I caught my "disease". However, he brings me flowers and visits post surgeries... If he stayed away, it would break my heart.
RaiderGirl, Meadow, and Beachbum, we applied retail therapy during the holidays which seemed to normalize things for my friend.
Morwenna, I can just see all her customers parading around the parking waving bras... so funny. Love that you spoke up.
Jackbirdie, your friend is traveling so far to be there for you - she probably would really just appreciate having concrete tasks to accomplish for you (cleaning, shopping, cooking...) She sounds like a keeper. I did not do chemo. However, my daughter gets infusions, and she usually watches a romantic comedy DVD (or something light) on her laptop throughout. Before she went to college, she would share an ear bud with me. Stay strong.
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Bride, as others have said in previous posts,, there are NO words for that jackass MO! OMG! How insane! I really hope you find another MO in the same practice or somewhere else. I can't believe you are expected to wait 6 months for followup. Insane.These survivorship meetings are interesting. I have not heard of them before. So far, my only plan is every 6 month mammo or MRI. I asked at last MO appt and that was all he suggested.
Jackiebird: a new hat, Swiss chocolates and your friend is coming to visit! Excellent. Glad you like hanging with the subversive bunch here. Love the Nerf ball idea.
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Jackie I agree with MsP. What a wonderful friend.
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Jackie, just a note for your own comfort, chemo is usually very constipating.....I found that adding grape juice to my diet the day of a treatment and few days after really helped me be normal, and dealing with all the other side effects, being "normal" on the potty was one less thing. Enjoy the freedom from having to do your hair too! I rather enjoyed the no hair days. Again one less thing to fuss with while fighting the beast
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bride,
That is horrible! Kudos to you for pushing back and telling her to sod off! I probably would've melted into a puddle of tears. Can you get references from anyone at your treatment center
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Hopeful, and Meadow, thanks for answering that question! I think that sounds like an appointment I might enjoy, now that I understand. Jackbirdie, I am with you, I like the name "continuity of care".
Meadow, I was in your town the other day. My mother is in Cox South and I found myself parking in front of the Hulston Cancer Center. I seem to gravitate towards the Cancer Centers at this point in my life. Wonderful hospital!!!!!
Morwenna, I had to laugh as my husband said your experience would be something I would say. You go, girl!!!!
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Nomatterwhat,
Your post about survivorship and your husband really hit home with me - brought tears to my eyes. I'm so glad I found this board
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my dear new subversive friends: my friend is here, and we are talking, eating chocolate, laughing, and NO crying! I am somewhat nervous, just popped a "pam". Hoping to sleep well, hope they spray my port site with numbing stuff, cuzit still hurts, after two weeks, hope I packed everything I need in my chemo bag. I think I am ready! Will definitely check in tomorrow.
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Jackbirdie - I hope you do sleep well, and you will be set to go, it's Game On! My MO wrote me a script for lidocaine cream to be put on one hour before chemo. I just cover it with saran wrap and tape it on to seal it. Keeps it on the port and off my clothes. I never felt a thing, it works great. Good Luck, check in so we know you are doing ok!
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Good luck, so glad your wonderful friend is with you.
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Beachbum and Hopeful- you guys are great! Thanks. I will check in. And ask about the lidocaine cream. It may be too late for tomorrow, but maybe they'll have something on hand for me....
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((((Jackbirdie)))))
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I think I used the cream ("EMLA cream") exactly one time. After that I didn't bother. Some times hurt a bit more than others, but only like a "pinch". The best trick I found was the one where you take a deep breath in as they poke you.
I certainly found it preferable to using an IV in the arm .... which I had for my first two infusions, and my veins have been crap ever since!
I'm not supposed to use my left arm as it has lymphedema, and my right now really has one place which they use, and I currently have weekly blood draws for my INR. It is getting so scarred up now, that it takes an expert venepuncturist and/or a certain amount of blind luck to avoid multiple pokes!!
You'd think having so many needles I would have got used to it in the last 2 1/2 years, but I seem to get more anxious rather than less!
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Jackbirdie Hello there chemo twin! I shall be joining you in the morning for my CT#3. it's 2:30am here and my Decadron has me up as usual.
. Oh well, good excuse to sleep tomorrow! I've hydrated today and took my Senekot-S this evening. (chemo#1 taught me to take this stuff early and stay up with it for a while)
I bring all a cozy supersoft blankie and my favorite pillow, my iPad & headphones (for books, TV or movies) and a coloring book with markers. If your infusion center doesn't provide juice and snacks, pack a few small ones with you. Nibbling a bit through the day can help keep the tummy calm too.
So glad your friend is with you, that helps so much. Another great thing about a chemo buddy? They can run out and fetch whatever your heart desires while you are having it done.
About your port. I got one after my first chemo and I LOVE it!!! Trust me, I am a total wimp about needles and shots. So I was really nervous because we used my port for lab draws 5 days after it was put in and then again for #2chemo 2 days after that. My nurses know im spooked by needles so she used a lidocaine spray on it and let it sit for a bit. It gave me peace of mind I think. I felt a slight pinprick as the needle entered but it was instant, no big deal and was MUCH less obnoxious and didn't sting at all like the IV I had for my surgeries and first chemo did (as they do not need to move it around to "get the vein")
After 4 weekly labs of me asking for the lido spray, my nurse that I call "Honest Heather" said "OK, but I really don't think you will feel much of anything other than some pressure".... Yesterday I finally caved and went no-lidocaine. She was right. I didn't even feel the itty bitty pin prick that I felt the first 4 times!
You got this girl!! Don't hesitate to post if you have any questions! No one is far away!
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Jackbirdie,
One of my ONC nurses told me to cover the port numbing stuff with Saran Wrap cause the bandage they give out lets it evaporate too quickly. It worked.
Oh, I just spent the last two days down ay treatment center. Never underestimate the cunning of pissed-off crones. I've been awake for over50 hours--will write my tail of revenge ASAP.
I want some of your friends. Or maybe just some chocolate..
bride
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