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New here--coping with Radiation

Hikergirl
Posts: 2
Joined: May 2013

I am a 57 year old female diagnosed in late April. I have read through a lot of posts, and although I am sure if I keep reading my questions will be answered I hope no one minds me asking again. I was fortunate and had no nausea with my first week of chemo. I hope the next round, which begins May 28 will go as smoothly.  My hair seems to be getting thinner but frankly that could be my imagination. I  had my 13th radiation treatment last Friday. At about #8 I started having diarrhea. Not every day but very unpredictable when it would happen. I would skip some days. Today was the first day that a BM was excrutiatingly painful. Makes me want to scream. Although stool is soft, I feel like internally I am on fire as it passes thru. I assume this is a side effect but what has anyone fouund to be helpful. I am almost scared to have to go again. 

I have read so much info on diet but have trouble sorting it all out. What has everyone found to be easy on the system, particularly as it passes thru?

The itching, which is more internal than external at this point drives me crazy, particularly in the vaginal area.  

I will be grateful for any tips anyone can give me. 

pializ
Posts: 255
Joined: Nov 2012

Hi Hikergirl!

I am so sorry that you have had need to find this site. I finished my treatment 25th January 2013. It could be worth you starting on pain relief if you have not yet done so. I found a low fibre diet helped throughout treatment and for some time after (I still cannot eat fruit & veg as freely as I did prior to treatment).  I also have found a portable bidet to be of invaluable help (I think you have a sitz bath available for purchase in US which others find really helpful). I took stool softeners for a while too. I used very soft wipes rather than toilet paper. I only had diarrhoea after I completed treatment.

The irritation you mention could be vaginal thrush which I had during treatment. This was treated with fluconazole which did help the symptoms, but it caused my ALT levels to rise significantly and the symptoms reappeared.  I managed it by taking Benadryl non drowsy antihistamine.

Although the path is similar for all of us, we all seem to experience things differently.

Please do not be shy is asking whatever on this site. There will always be someone who will be able to chip in with some advice or support. It's a tough journey, but perfectly doable. I joined this site before I began treatment & so glad I did! It really did help reading the posts and being able to ask help from those who had gone before. 

Keep us posted with your progress & ask away! This will become a memory really soon & you will wondered at just how quickly it passed.

Liz 

Hikergirl
Posts: 2
Joined: May 2013

Thanks Liz. I know everyone reacts differently but what kinds of raw/cooked fruits and vegetables were you able to tolerate?  I am struggling with that. I have typically eaten a ton of raw vegetables and fruits and have had to give a lot of that up. 

I will discuss thrush with my doctor...you may have hit the nail on the head. 

Marynb
Posts: 1134
Joined: Aug 2012

Sorry you are going through this, but it sounds like you are doing pretty well so far. All of us experience some pain at varying levels. Depending on your tolerance and how your skin and system responds, you may need medication to manage pain. I was one of the lucky ones and did not need pain meds. Stay very well hydrated. A nurse told me to basically never be without a water bottle. It helped a great deal. A low fiber diet is a must. I eliminated all citrus and acidic foods. That will help with the urine o it doesn't burn. I used a squirt bottle filled with room temperature water and used it on my skin as I was urinating, etc. Also, a sitz bath is quite soothing. I relied heavily on my handheld shower to keep the area clean and ro soothe the skin. Keeping the area dry and clean speeds healing. One more thing, eat extra protein to speed healing of hte skin.

Hang in there!

LaCh
Posts: 509
Joined: Dec 2012

I have a high tolerance for pain but the pain that I experienced during treatments was so excruciating that I wanted relief in any form that it came, sleep, death, didn't matter a whit to me. The unconfirmed diagnosis was a tear or a fissure and if that's what you have or suspect that you have there's little that you can do.  I kept a "scream towel" near the toilet to cover my mouth so that my neighbors wouldn't hear me when I went to the bathroom. At week four I finally caved in and took pain killers which helped with the pain from the external burns but did nothing for the problem inside. Nevertheless, my advice is don't wait as long as I did to take painkillers. I'm sorry if you were looking for reasurrance or some sort of downplay of what happened. That's not my style.  I won't lie to make it seem less than it was but I won't lie to make it seem more. I find both less than useful. What I can tell you though, is that I got through it, and don't even think about it any more.  Unlike you, I had it from week 2 of treatment until 2 weeks post treatment BUT I got through it and it healed.  Try pain meds; I took oxycodone. Maybe it'll help you more than it helped me, but if you take it, be aware that narcototic painkillers constipate.  I also stopped eating, thinking that the less I went to the bathroom the better it'd be. My advice is don't do that. I ended up losing 5 pounds in 5 days and fainting in the radio oncologists office.  Try pain meds first and just know that as bad as it gets--and nothing can change that during treatment--it WILL get better when treatments are finished. Stay in touch with the website if you find it helpful.

mp327's picture
mp327
Posts: 2824
Joined: Jan 2010

Sorry for the diagnosis that brought you here.  While this is not an easy thing to get through, you will, as the rest of us have.  I had terrible pain with BM's and did not take enough pain medication.  I would say you need to start taking it now.  Do not let the pain get ahead of you.  Take the minimal amount you need to ease the current pain and as things ramp up, increase your dosage.  My biggest regret in how I handled my treatment was that I did not take enough of the pain meds, so don't make the mistake I did. 

As for diet, I think your best bet is to avoid fruits and veggies for right now.  Your system is not going to be able to handle it.  Stool softeners will help too.  I would suggest a soft and low fiber diet.  It will make for less that your system has to pass.  Make sure to get plenty of protein, which you can by drinking Boost or Ensure.  Also, lots of water!  Hang in there, you'll soon be done with this and healing, believe it or not, takes place very quickly in most cases.  You can get through this and we are here to help you in whatever way we can.  I wish you all the best!

jcruz
Posts: 207
Joined: Jan 2013

Wow, I am beginning to feel like an old hand here, ready to offer anecdotal advice to a beginner.  I am so sorry that you're going through this.

I agree with pializ that you may have thrush.  I had it bad - mouth, throat and vagina.  I could hardly swallow and the itch was unbearable.  Seven days of diflucan after each week of chemo.  The itch could also be the beginning of the irritation of the skin from the radiation.  I'm not sure how to describe it - sort of like it's not really burned yet but it is irritated.  I used aquapor compounded with lidocaine for all external itching/irritation around the whole area.  As others have suggested you may be at the point of needing pain meds.  The BMs for me were excruciating and I was already taking 5 mg oxycodone since a month before my treatment started due to having surgery for the biopsy and for bartholin's cysts (a double whammy surgery!)  I began taking 10 mg CR oxycontin around the 3rd week and stayed on it til about 3 months after treatment ended.  I mainly drank smoothies and ate whatever appealed to me which wasn't much but I did stay away from most fruits and veg until well after treatment.  I have siblings who live with chronic pain due to a variety of medical problems and I can see from them what a difference pain medication has made so I am a big believer in taking pain meds when necessary.  And for me it was absolutely necessary.

I am now 7 months past and feel a little better as each month goes by.  Still have some BM issues (frequency and urgency) but I can almost say that it doesn't hurt to go and I am eating more variety of foods including more veg and some whole grains.  Everything is a bit of a gamble so I only try new foods on Friday or Saturday just in case anything goes terribly wrong and I need to be near the bathroom the next day.

Keep asking questions.  We'll all have variations on the answers.

Good luck as you go on with treatment.

eihtak
Posts: 809
Joined: Oct 2011

Hello and welcome. I am sorry that yet another has had to join this group but as said, you will find a wealth of helpful info here and before too long you will be paying it forward!

I agree with staying ahead of the pain. I was started on ocycontin/oxycodone before treatment (I could not even sit or lay on my back, and slept kneeling over the bed!) I had some complications and at one point was taking 80mg twice a day!! That was a thing of the past and will be for you too. I am now 2yrs post treatment and feel better than ever. Lots of fluid, stool softeners, and at some point whatever your stomach can handle but most stay away from too much fruit and vege unfortunately for a little while. I took sips and nibbles of milkshakes, tomato soup, cheese sand, yogurt and thats about it. Poor diet I know, but that was all I could handle. The hand held shower and squirt bottle helped a lot also.

I will have all in my thoughts and prayers ........

Lime Flamingo's picture
Lime Flamingo
Posts: 15
Joined: Mar 2013

I completed treatment about 6 weeks ago.  One of the things that made tremendous difference for me was, fluids.  My doctor allowed me a bag of fluids each day of radiation.  I still had brutal burns and the itching was almost more than I  could take.  Lots of baking soda and salt flushes with a bottle.  Epsom salt and baking soda in tub.  Get comphy, lay head on side of tube and nooze.  I go back in on May 30 for a look see.  Tissues are still very sore and itchy, but nothing like before.  The worse thing for me now is my sister has just been dianosed with inoperable adenocarcinoma of the right lung.  I wish I could take it from her.  Our mother died of lung cancer, not an easy death.  Praying for a miracle for her and everyone on this site.  Hiker Girl you stay strong and think only of yourself right now.  Checkout those fluids, my urine a whole lot cooler.  God Bless

 

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