Fall 2013 Rads

ItIsWhatItIs2013

Jbdayton....

I am so sorry!

I too lost my mother just at the end of my treatments...a couple weeks ago....

We will be spreading her ashes off the coast on a chartered boat on Saturday.... I will keep your family in our prayers.....

Lorrie

Rainyday13

Lisasp..Yes, I am noticing a slight pinkness also with no irritation or itching. Your are right, it is feeling more comfortable. It helps me to just comcentrate on each day instead of looking at the stretch before me.

Rainyday13

Jbdayton..I am so sorry about your mom. You did the best you could possibly do. Life threw a lot of tough circumstances your way. Please don't feel bad for a minute. Your mom would certainly understand.

ItIsWhatItIs2013

Yeah...you can only co what you can do...

 Good luck to you all

Lorrie

Kruise

Jeannine - so sorry for the loss of your lovely Mum. She will be reunited with your brothers, Dad and loved ones that have gone before her now in a beautiful place. Don't hold any guilt - goodness knows we don't need emotions like that whilst trying to recover our own health.

Congrats 4sewwhat on your finishing and peacestrength you are so nearly there too. Well done.

I am finding it a bit hard recovering at the moment - not from skin issues but more like the fact I have got through 10 months of treatment and my body has gone 'thud' now that I've crossed the imaginary finish line. I think the radiation effects are still whirling around in my body. Detox plan must be in order soon I think.

Love to all x

McKatherine

Kruise - thanks for sharing your pic of your treatment room. I'm sad I didn't think to take one while I was there. I was updating my blog yesterday and spent hours looking online for a good pic of a treatment room.

I have my tamoxifen sitting here waiting for me to start taking it. I was supposed to start after rads, but I got a cold last week, and didn't want to start something new while I was sick. (Too afraid of missing / misinterpreting SEs). Hoping to start in a couple of days - although one of the chemo nurses (when I was getting my Herceptin yesterday) said she would wait until after the holidays. *shrug*

Lauralind5 - the skin in my back ( the exit wound for the beams treating my supraclavical nodes) was tight and pink after only a couple of days - but it never did anything else, even after the rest started peeling and getting red. Hopefully yours is just early attention-seeking skin like that.

Cider - so sorry your skin is still so sore! I feel our pain with the uniboob. I was sooo glad that I was able to start re-expanding my deflated TE last week. Haven't been wearing bras either and I think that's helping everything heal faster! Tie lots of beautiful scarves over your scoopnecks and hang in there!

Jeannine - hugs.

4sew - congrats on finishing!

I'm one week out from finishing (2 weeks out from full field tx) and my skin is on the healing fast track now! I have very square tan lines at the edges of all the fields, and some redness around my scar (where the boosts were directed). The meanest spot right now is where the tagaderm sticker to mark the boosts was stuck. Still using Miaderm in the mornings and Shea butter / calendula at night.

I meant to ask my RO but forgot to last week - wonder when it's okay to start using skin products with antioxidants again ??

Hang in there radiant ones!!

summergal

Thank you, MsP. You are so kind! I'm a bit clueless about the whole "grays" thing - can someone lend some info - i.e., should I be concerned about how many I'm getting...I'm not sure what the number indicates...thank you.

I don't know why I feel nervous about starting today - I've been in the room under the "radiator" (what is it actually called?) for the past two days for an hour/hour and a half at a time each day for the imaging, precision coordinating and tattoos in prep for today. But this morning I woke up with a knot in my stomach. Took the dog out for a quick walk and did some deep breathing of this gorgeous, sunny, crisp Fall air we're having. I just have to get into my zen and concentrate on the breathing. Breathe in, breathe out. Wax on, wax off! That song "Radioactive" is going through my head.

Peace, all.

Bounce

Hi summergal

I think the machine is called a Medical Particle Accelerator or a Linear Particle Accelerator (LINAC).

Hope some one will confirm or correct me.

You don't need to worry about how many Grays you are getting - I think we are all getting good medical attention with competant staff (even if some of them don't know how to smile I think they do know their jobs).

Its hard going from always being Mom In Charge to being in a situation where you have no control over what's going on and just have to lie there and breathe! But I think it helps to relax and just shine.! Let someone else do the driving for a change.

I actually felt rather important today lying under the LINAC thinking that that huge, incredibly complicated machine was working for my benefit!

It sure beat my usual thought that I was going to go ZZZZZ and turn to ashes like a fly hitting those awful contraptions that fry them!

Remember summergal - we make Rambo look like a baby.

Hugs

MsPharoah

Summergal, when you add up all the treatments, you should get between 50-65 gys. Ask your technician how many you are getting. If they give it to you in cgys...just divide by 100! How did it go today?

Bounce, I called my machine a "flux capacitor" . It was also known as a "turbo encabulator". The last machine name was a gift from a nerd friend at work.

It's getting cold now folks, so I guess we have to turn up our "radiators"!!

Shine On! MsP

Bounce

MsP - I laughed so hard I had to hold my boob still.

hobbesla4

Hello All,

I am waiting to start radiation in the next week to ten days. I had an appointment on Tuesday for scans and tattoos. I am hoping the radiation goes more smoothly than that appointment did. The receptionist had double booked me and someone else, so I ended up waiting in the treatment room about an hour. There was also a misunderstanding about the tattoos. I thought they would be able to draw on me with a Sharpie, but everyone said that that would not work, so I ended up with the permanent tattoos.

Kind of scared to have the actual radiation. I will be using the machine that has you placed on your stomach. Can anyone share with me what your cycle has been like so far? The RO said that I should use Aquaphor ointment for skin issues and if something else is needed that we will deal with it when that occurs.

Thank you. Hope you are having a good week.

summergal

Well...I had a tough time today. I couldn't get my breathing to go up to where they wanted it (I have to take a huge inhalation and then hold my breath to the same level every time they take an x-ray or shoot the beam). I think that, in the CT sim, I was so gung-ho that I breathed in too much and established my breath at too high a level to sustain. But now, it is what it is. All the measurements are based on that one breath. I just couldn't do it today. I tried and tried and it went on and on for an hour. I was freezing, shaking, couldn't relax and get into the zen that I've used for the past two days for the imaging and tattoos. Finally the RO came in and told me that it was okay to breathe lower than the level, that I would still get a benefit from the treatment. He also told the techs "it's not supposed to be this hard" meaning that this treatment is supposed to eventually be able to be offered to many people of varying fitness levels, so they can't make it so unattainable that it excludes the majority of people. All in all the techs were incredibly nice and compassionate, they let me sit up, got me warm blankets, continuously encouraged me, but I felt like a failure. In the end I did get my left breast radiated, but when they went to the right side, they wanted yet another x-ray and I was inhaling and inhaling and they kept saying "a little more, a little more" and three times in a row I felt my head start to spin like I was going to pass out, so I finally said, "I need to stop." And so they did and one of the techs came in and it turned out I was starting to hyperventilate, so he worked me through that, but then the tear started to roll down out of my eye, and he told me it was okay to cry. They even brought my husband in at one point, but that made me want to cry, too, since one of the meditations I have used in there is that I am doing this for my husband and my little boy. So we never got the right side done and now I have to add on an extra day at the end. All told, I was on the table for an hour and a half today. I really, really hope it goes better tomorrow.

70charger

Had my simulation & tattoos today. In & out in like 10-15 mins. Hope treatment goes that quick.

MsPharoah

Summergal, so glad you had your husband with you today. What a miserable time you had. The techs are compassionate and your RO is determined for this to work...so they will get this right for you I'm sure. Cry whenever you need to cry. And by the way, you're not just doing this for your husband and little boy...you are doing it for the whole world. You are a radiant lady. We all need you to keep on shining.

Love, MsP

Bounce

Hi summergal - sorry you had a tough beginning but things are going to get better.

Your RO sounds great - very encouraging. If you breathed in real big once before - you will be able to do it again. Tension tightens everything up - as you get used to the place and used to the machine you will relax more and more and the breathing will get easier.

You aren't there to be a "good girl" or to please anyone or to perform for anyone or to make anyone happy. Its nice you want to do this for your husband and son but its time to let up with pressure and do it just for yourself because you are valuable and important even without your role of mother and wife.

Whenever I am told to breathe deeply by a doctor I do it too fast and get giddy. Breathe real slow. Take your time. Everyone is there for you and you can set the pace. Remember it is also a question of the techies learning things. And if the team has to replan something they can. The extra x-rays they take are to make sure everything is in place or to see if they have to readjust something. So even if you have a plan I am sure it can be adjusted if needed.

There is a saying where I come from - All beginnings are hard.

Slow and easy. Slow and easy. Each day you will get a little better until you are handing out pointers to the newbies.

Love and hugs

summergal

Thank you, both, MsP and Bounce. You've both made me cry with your lovely words and encouragement. At one point in the whole proceedings today I suddenly thought of my pocket, and gathered everyone from this thread in there. I'll take you in again with me tomorrow. XOXO

70charger

Summergal make room in there for me.

mcgis

Hi! I'm still healing from my exchange and was told to wait at least 6 weeks before starting my 33 days of RAD. I was given the choice to either get RADs or not. I'm choosing to do so because it's just another thing to help kick cancers a%%. My chemo buddy finished her RADs a few weeks ago and used Aquaphor and Udder Cream to keep moist. I was just wondering if anyone used an oils (Vitamin E, or Essential Oils...)? Are those allowed? I'll ask my RO when I meet with her too.

MsPharoah

Hi mcgis and welcome!

There are lots of different potions and lotions that people use and each RO is different about what they recommend. My recommendaton is that you use the product(s) your RO prescribes. You will see your RO 1X/week during treatment and there should be time to change if things are not right. I used Aquaphor right after treatment each day. And I had pure aloe gel on hand to use at night. It was so soothing. You may also want to have some over-the-counter hydrocortisone cream to use as an anti-itch cream. You don't want to be scratching your skin during treatment as that may cause it to break down. Don't assume you will have problems. Many people get through radiation just fine. I had very little fatigue and manageable skin issues but I was sure scared before I started. All the best to you for your surgical healing.

MsP

Jo6202

Rhcp66, consider yourself joined.:-) sorry we have to be here but good to also have a fellow Michigander. My skin is a little pink but not itchy. The think that is getting to me is my nipple...feels so sore. I am using aloe and Aquaphor too. Where do you get emu oil? I am retired so get to take a nap everyday when the fatigue sets in. Feeling lucky.

anne11595

Jeannine im so sorry to hear about your mom. My heart goes out to you!

Summergal you really when thur hell. I can not imagine what that was like for you. But it has to get better!! But I am so sorry you had such a hard time. I will be sending you lots of happy thoughts.

Today was 23rd treatment and tomorrow I will start my boost. So in 7 more days I will be done!!!!! My underarm is very dark and the skin is peeling like crazy. It funny I never had skin peel there before.I quess I'm lucky I caant feel it at all until I stretch my arm. But it all most over with now.

I had this hug syct removed from the middle of my chest last week. That was fun to. He had to put a stitch in the middle to close it some. Still having it repacked every othier day. To day a nurse done it and it hurt like crazy!! I think she was in a bad mood and took it out on me. Hope I never get her again!

So glad to hear that so many are done rads. Really glad you are still here to help all of us to. So sorry to  hear that we have so many new comers. But you are in good hands here. So its almost the weekend. Time for are little healing time. Hope everyone has a great weekend and hugs to all.

Lav

Sumergal good luck and fret not before you know it,it will be over.

Jbdayton I am so sorry for your loss. What you have gone thru couldnt have been easy at all. It would have beem tpugh enough having taken care of your Mom yourself worst with ypu having been diagnosed and having to go thru chemo and rads too. Please dont blame yourself. You did your best and sometimes a home can give better 24/7 care than we can. Remember shes at peace now and not suffering anymore.

On another note has anyone use Lipikar baume of La Roche? The doc has recommended me to shift from aquaphor to Lipikar as Im suffering with open pores on the radiated skin. The fatigue and exhaustion has set in really strong from yesterday. 21 down 9 more to go. Cant wait to finish.

Bounce d machine at the hospital that I go to also broke down today with me right on d table in position and they finally had to ask me to wait out till they could restart it since it was really cold in d rads room. Had to wait 45 minutes till they got it working.

FierceBluebird

Jeannine and Itiswhatitis, so sorry for your loss. This has certainly been a difficult year made more difficult by loss. My mom died of breast cancer several years ago, but now that I'm going through it myself I'm reminded so much of what she went through that it reopens old wounds. I know our mums are all at peace now and cheering us on.

Linda, my advice would be to take it slow and listen to your body. I did 6 months of chemo, then BMX and immediate flap reconstruction and then into rads before healed from surgery. It's been rough to say the least and if I could rewrite this script, I wouldn't have started reconstruction. My body just didn't bounce back from chemo.

70Charger, (love old chargers) I used Avalon biotin shampoo and conditioner from Vitacost.

http://www.vitacost.com/avalon-organics-thickening-shampoo-biotin-b-complex-therapy-14-fl-oz-8

It worked fantastic for me, my hair grew back quickly and thickly, but I was disappointed to see it marketed as an organic shampoo but the ingredients says it's "70% organic". What the...? You can't have something a percentage organic!! But it smells nice and worked great, so I'd recommend it.

Congrats to all those finishing!!

My last day of "regular" treatment is tomorrow. Thank goodness! Spent another 2 hour session on the table today. (The machine in my treatment room is called a Mthr F@#$#!!!) My skin is breaking down rapidly and I still need 5 boosts yet. My doctor is leaving it up to me if I want to take a small break to see if I can get the skin to heal or if I just want to get finished. I was so looking forward to being done next week, but my skin is bright red and has about a 4" open area. Can't decide if I want to just try to get done or if I should try to heal a bit.

McKatherine

a little song to get all you radiant ladies through treatment Friday:

I've got something in my pocket,

and I use it every day.

It keeps me feeling calm and zen

While I'm being zapped with greys.

I'm sure you'll never guess it,

If you search all through your brain.

It's my radiant friends, from BCO

They're the ones who keep me sane.

: )

wyo

love it- I need to commit this to memory for treatment days

Bounce

Bluebird144 - you machine has a wonderful name. (I love it when ladies swear. - For some reason I think it is incredibly cute.) If I manage to lie still for my next treatment instead of laughing it will be a miracle thanks to you and MsP.

summergal - hoping things go easier for you today - no pressure to be perfect - relax.

Lav - could you tell there was something wrong with the machine? Do you know what was wrong? I am always interested in the technical details. Am also interested to know how safeguards work.

Any technical minded ladies out there who can tell me how the techies can check I am getting the amount of radiation planned for me - not more and not less?

McKatherine - between the humor and the music I am feeling really up and happy despite the fact that I feel like a rugby player ran into my boob!

Thank you ladies.

wyo

HI Bounce-

Interesting you brought something up about the machine-

today when I went in the second tech had not shown up yet so the one I like and I were chatting and she was trying to do both sides herself. The guy came in and they were reading the numbers and she said "wait that sounds like a lateral measurement-" then he said "lets check it and start again" they re- did everything and the LINAC needed to be repositioned 180 degrees. Not a confidence-building moment but happy they were doing their process and identified the issue and corrected it.

My doc showed me the 3d rendering of my fields imposed on the pictures- I thought of you immediately- then he showed me also on the CT scan so I could see my lungs, thyroid, heart and how the field was created. It was very interesting and detailed to the last millimeter. Also good to see how it just catches the outer edge of my lung and is quite a distance from my heart because of the positioning.

Bounce

wyo - that's the kind of doc I need. I only get to see my RO once during treatment and once at the end. For those of you who see the RO every week during treatment - what does he do?

I am glad you are happy with the plan - it sure helps when people give the impression they know what they are doing. Sometimes my techies don't check each other and it scares me.

wyo

bounce-

if you have any questions ask me and I will ask my guy for you- what the heck right!! This week my RO was out so his partner saw me- we talk about treatment, any side-effects, he reads my weekly x-rays, looks at my skin and this week also being able to have a flu shot during rads.

ROs are generally "cold fish" but the ones I see in meetings for work are amazingly committed to treating cancer- they eat, breathe and sleep it- did not get that vibe as a patient wish they would show that side.

I am a surgery nurse and a safety nut by trade- That check and double-check is pretty darned important to prevent errors- they do worry about patient perception but sometimes "phone it in"- could you say to them something like "I like it when I hear you guys read out to each other and confirm- it makes me feel safe" which in Bounce-speak is really I don't trust you guys a bit so when you don't talk to each other I worry I will turn into a pile of ash!!

Bounce

wyo - how clever - just tell them it makes me feel secure. Great idea.

I think that I have good techies - they are very quick in getting me on the table, aligned and zapped and out. I guess I just need to relax and trust them and just plain old tell them what I need from them in order to feel secure.

Sometimes someone else's perspective can really help.

I guess its hard to have much of your own sense of perspective in a vertically oriented room when you are lying horizontal.