August 2018 Starting Radiation

Looks like I most likely won't be starting until after Labor Day. My planning session is scheduled for 8/28. The radiation oncologist likes you to be a month out from final chemo before starting radiation. Luckily he says I'm a good candidate for the accelerated whole breast radiation so 3 weeks plus a week of tumor site boosts. Fingers crossed that plan doesn't change as we have trip planned to visit son in Chicago for Canadian Thanksgiving.

Kidogo - have you tried Melontonin ? I actually think it gives me a better night sleep than even the low dose Ambien.

NVdobie- where do you get the Mepitel film?

(((Dee)))

Dee - eek that's a long drive! Mine is about 35 min each way & that includes a large margin for traffic variations. Sometimes I'm there in 20. But if my rads spill into September when I'm in school, if I have to drive to or from the campus, then it will be a solid hour + more for traffic. Ugh.

Maybe you can treat yourself to an audiobook on audible? Or podcasts?

Kidogo, thanks for the idea of a specialist store, i believe there actually is one in a nearby city I can try. So far the underwire bras are ok, surprisingly. My m.o. Dr. Told me it's more of trying to shelf up the breast with cool compresses, than compress in on the breast. I have started to notice a bit of firmness and swelling as they have said may happen, but nothing horrible.

Best to all here👍👍👍

it's hard for me to grasp who all said what here, but I think it is Monithor who offered the hydrating importance, thanks for that reminder.

As far as the holding your breath idea to protect your heart, is this for those of you with the breast affected on the left side? I was never informed of anything about it, but have right breast involved only. And the Mepitel Film, i have never heard of this either, was it suggested by your radiation team? What exactly is it?

My radiation team gave me a tube of Skintegrity. It's a hydrogel, and the tube says for up to 3 days use with 1 application, and for full thickness wounds, 1st and 2nd degree burns. I have not used it yet, as I have no burns. I have finished 9 treatments so far. Just using ice, aloe and cornstarch.

I'm sure hoping that the after affects don't go into 3 weeks, i expected a few days or a week of continued skin issues after the last treatment, but not weeks. Oh boy. Hoping for the best!!

Thanks, Ingerp, it all becomes confusing!

Hi Dee,

Yes. My experience with the 4 “tattoos” I received was slight pain (like a bug bite) and I have only been able to find one of them on my body when looking for them in the mirror. (I DO have freckles/Moles on my body though) Even the technician has to use a bright flashlightto find the dot on my right side during radiation treatment.

Best wishes! Hope you get a starting date soon.

Hi astyanax66! Yes, Athens is a great place. I went to school here and moved back about 7 years ago. I cannot wait for football season to start. I had my CT scan today. My center does not do tattoos so I have 5 X's and waterproof stickers. I will start next Monday. Ready to get this over with! I think I am more nervous about this than chemo. I just don't want any problems with skin/my tissue expander.

Hi Dee, i really empathize with you on the choices issue. I have noticed all over every door and wall in my clinic are big signs saying SPEAK UP. then the sign goes into how the whole team is committed to the patient, quality of care, compassion oriented staff, etc. At first I was a compliant nice person ... Who has transformed into the patient they all know about. I had it OUT with my radiation oncologist. And several others. There were several issues I came across that I was very unhappy with, and it took me really SPEAKING UP to be "heard,

Are you sure you know the patients rights where you are treated? possibly speak to the social worker there, or the staff leader. Express your concerns about choices. You should have input on your treatment. Tell them you are not a number on a list but a real unhappy human patient who needs them to listen.

Best hopes for you on the tattoos . They were about to do that with me, when I said emphatically NO, THERE MUST BE ANOTHER WAY. Funny there was! I know each facility had different structured procedures, and rules, but make a point to read their patient bill of rights and make your feelings known. In no uncertain terms.

Chin up girl, it's moving along.

I had my 10th radiation today, but they called me at 7 am, the machine was down ,they sent me to a nearby hospital for it, and my usual rad tec went there to meet me for the treatment!!! Wow, impressed!!! Machine needed a fuse, tomorrow I go in to the alternative place again. So glad I'm not skipping a day. I have to wonder if the tec would have gone to this off site if I had not had a mega meaningful chat with her .

So ...today I walked my mile. Went home. Felt e xtra wiped out. Just sat for hours, felt odd. Had to pee several times in a row, sudden and acute agonizing pelvic pain, couldn't empty bladder, or so it felt. Then I see (sorry if tmi) I'm peeing pink and blood clots. Off to urgent care, could barerly walk. Turns out severe UTI and. Dehydrated. Off to drug stpre, its letting up a bit after a mega antibiotics pill a nd 3 ibuprofen.

I know it seems to go on and on, but we will get through it.

Djt- I love hearing how you spoke up and stood up for yourself and your rights! I had to do that a couple of times, then felt bad. Then got mad at myself for feeling bad.

I did not have a port during chemo and learned very quickly which phlebotomist could draw blood in the lab without leaving one single bruise. And I knew which oncology nurses could find a vein, painlessly, on the first attempt. So I would request (insist on? Demand?) the medical professionals I had to see every single week for 12 weeks. I just couldn’t let my body be a guinea pig and my arm be battered and bruised when it didn’t need to be.

I am sorry to hear about your UTI. I have had them before and it’s miserable. Theycome on so suddenly and seem to get worse by the minute. The only good thing is antibiotics seem to start working quickly. I hope you are feeling better and back to your mile walks soon!

Thanks, Moth and Monithor, iv taken 3 of the antibiotics so far, and it is getting much better. You are so right it was the quickest onset of anything I have ever Had!

As far as the insistence in the treatments and how we react, i know the staff are good, but they are human, i had one chemo session where they brought a new nurse in, she was from another facility with used different equipment. She did not know how to do the iv connection to the tubing, and as she ran to get someone, and figure it out, my vein just bled out all over the place. She said " don't look over here." That was after she really hurt me good with the the needle going in. She was the only time I had bruises from the chemo IV. I believe they treat so very many of us, it becomes routine, if not mundane.and if we don't remind them, hey, we ARE skin, bones, nerves, and people here, they become somewhat desensitized . But i had to laught at your comment how yoqu got mad at yourself, ...i feel ya.

Thanks, Dee. I know each day seems to bring new issues, and different levels of tolerance, as well as moods. As I was sitting in the waiting room for my radiation therapy this am, every other person looked so so awful, and I AGAIN, realize how fortunate I am.

You may be low on the oomph right now, but it's going to revisit you soon, i hope. Bad days are going to happen, man, i tell my self on my worse days ( when I look in the mirror and see Cruella DeVille)....."remember you dont want to go to jail, what would you tell your grandson".

Yay Colleen - glad you have a lovely team & the scheduling will work out for your holiday!