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Advice for ghastly radiation burns please?

72 REPLIES
Member

Re: used emu oil

Hi ladies 

Emu oil is pretty amazing, I’m using Calendula, (marigold) an anti inflammatory, normally used for burnt skin. 

Personally I would not use any creams that  contain parabens, SLS, propylene glycol or synthetic ingredients. 

 

Member

used emu oil

I just finished 30 treatments.  I used emu oil right after treatments and after shower.  I had some

swelling and redness but no broken skin.  MY doctor said he was going to start suggesting the 

emu oil because my skin did very well.  Hope this helps someone.  I know all the procedures we

had to go thru and we need to find what works to help reduce pain.

 

Member

Re: Advice for ghastly radiation burns please?

I just finished 30 treatments.  I used emu oil right after treatments and after shower.  I had some

swelling and redness but no broken skin.  MY doctor said he was going to start suggesting the 

emu oil because my skin did very well.  Hope this helps someone.  I know all the procedures we

had to go thru and we need to find what works to help reduce pain.

 

Member

Re: Advice for ghastly radiation burns please?

I had 30 treatments of radiation.  I used emu oil after each treatment and at home when I showered.

I did have redness and swelling but no broken skin.  My doctor said he was going to suggest emu oil

to other patients since mine responded so well.  Hope this helps.

Community Champion

Re: Advice for ghastly radiation burns please?

Emma

 

Contact your radiotherapy team and let them know what is happening.  There is a dressing called polymem which is for the treatment of radiotherapy burns, they can probably give you some and you can get a prescription from your GP for more but just in case it takes a bit of them for them to get it in, your first recourse is your rads team even when you have completed your sessionsl.  It has something in it that promotes healing.

 

Helena xxx

Member

Re: Advice for ghastly radiation burns please?

Hi I have just completed my Radiotherapy, my burns under my boob is so painful it hurts to move.  I have been  given so medication with Zinc in it by my Doctor.  The burns are sore red and open, how can I keep them dry to heal.  Any advise will help..

Thank you x

Community Champion

Re: Advice for ghastly radiation burns please?

Hi ladies, I had 25 sessions on breast and sub clavicle, including 5 boosts to the nipple. I had great advice from my team, and was supplied with a range of specific ointments throughout as the burns intensified. My skin never broke, which was the main aim, and when it got really bad the burns unit were called in and I got a cream which provided aplastic skin over the site. The only products I was allowed to use were Aveeno, which are oatmeal based. I was advised to lie on my back 30 mins after showering in cool water for the air to circulate. Also advised to wear loose clothing and go without a bra if at all possible. Contradictory advice if you think about op! I was supplied with codeine for the pain. The district nurses popped in weekly for additional support and  morale boosts. Never bought any creams, and I'm afraid I wouldn't use anything not ok'd by my medical team. The rads unit supplied me with hot line phone number in case of emergencies. I was checked every day before session started for skin condition and pain level , and then more discussion after session. Loved my team! 😍  I think once the skin has broken then it's really important to get medical care and not self treat. After all, not being medical people how do we know the various creams don't work against each other? Just my opinion. Best wishes to all sufferers. X

Member

Re: Advice for ghastly radiation burns please?

Hi I finished 25 radiation treatments 10 days ago and this is how I am helping myself get through it.
TREATMENT
I was told about a product called MooGoo which I used after my shower in the morning and in the evening and straight after the radiation treatment. When the burn started to show the doctors advised to use cortisone cream 1% to help with the itching. I used it for a day and stopped after I found out that it can thin the skin. This was the last thing I wanted to happen as I didnt want the skin to break and have more damage. The next thing I thought about was a trick I use when I get a little sunburn PawPaw ointment. I would put this on after I use the MooGoo at night (Its quite sticky and always wore things I was worried about disposing of) when the skin broke I started to use Intrasite Gel. The Gel on the broken skin and MooGoo everywhere else with Mepilex Lite bandages. The MepilexLite bandages stick to the skin with a type of suction caused by the foam and you dont have to use plaster; they also dont stick to your skin and peal away gently. The Sunday after I finished my treatments I had an enormous amount of pain under my arm and through the front of my chest where I had the Mastectomy. I took Panadol and when I visited the radiation clinic on the Tuesday they prescribed me with Endone. This was last Tuesday and since then the pain comes and goes but its normally always there and I am in bed or sitting on the couch not doing much. During the treatment the nurses were happy with my progression and said that my skin looked good and I saw others doing treatment that looked way worst than me (but cant say what stage the were at or how many treatment they had). I now use Intrasite Gel on the broken skin areas and MooGoo on all other areas. I then use Pawpaw Ointment over the MooGoo and then spread Sudocrem (a Zinc cream) over a gauze (Atraiman) and put this over badly affected areas. Using a thick cloth (chux cloth type) I cut this to size and place over the whole area and then use a stretchy singlet to keep it all in place.
My daily routine now is get out of bed drink a large glass of water. Shower using lots of Dove bodywash over the area that has the gels and creams on it. I don’t rub hard, just enough to remove the creams and then some physahex (antiseptic wash) pat dry and then go through the routine of putting all of the gel creams and ointments on again. I also take photos everyday of the radiation; this just lets me see the progression.
I repeat this at night before I go to bed.
NIUTRITION
I had read up about skin nutrition and made sure I was eating plenty of eggs (4 each day (2 for breakfast and 2 for lunch) and 1 avocado per day. I also take supliments vitamins C, Tumeric, Magnesium, L-lysine and an amino acid called L-proline. I make sure I eat heaps of vegie and fruit and drink at least 2 litres of water per day. I don't drink any alcohol...this cannot be good for staying completely hydrated.
This post is an insite to what I have done to get me through the treatment. It may not be the best for others and make sure youre body is compatable and doesnt have any reactions to the items I have used above in the post.
Member

Re: Advice for ghastly radiation burns please?

I just finished 21 days of radiation and I want to share this with you. I was told to put raw cabbage on my breast from the first day of radiation. It puts moisture back into the skin tissue. You know how you will bunch up newspaper and put it into a wet boot. It draws out the water. Well the cabbaged works like that in reverse. It worked to cool the skin down also. I would take it out of the frig wash it and keep it as large a leaf as possible. I would even put them in a cooler and take them to radiation. I would put this cream called calendula on first. I am still suffering from burns and it is not perfect but I still use the cabbage leafs to cool my skin and put moisture into it. I was blessed with great Doctors. I hope you can get some relief.  I put the cream on and than let air get to the burns from time to time. I will also put a cloth under my breast to let air get under the breast where it is very painful. I pray this helps you. Remember your beautiful !

Community Champion

Re: Advice for ghastly radiation burns please?

Hope you are contubing to heal well ,I had horrible burns under my boobs that got infected -once it started to heal though it was quite quick. I reacted to E45 cream - it was the paraffin in it - I smelt like burning tyres !!
Member

Re: Advice for ghastly radiation burns please?

thanks Jill!  that was my first post on any forums too.

 

i did want to add that I haven't been comfortable using a petro chemical product but at the same time wanted to follow what I was told was best by the radiation unit.  I saw (here) that someone else used a variety of creams that sounded good. I have seen a recipe today for a salve with beeswax which I'm guessing gives the salve a thickness/body that might work well - replicate the particular qualities of the parrafin ointment in moisturising and sealing moisture in?  

Here is the link if anyone is interested:  

https://www.theinspiredlittlepot.com.au/body/super-salve-one-salve-for-everything/

Lots of other great recipes too.

 

Community Champion

Re: Advice for ghastly radiation burns please?

Thank you for such an informative post Amazon Woman .
Member

Re: Advice for ghastly radiation burns please?

Hi all, I'm in Australia and wondering about the totally different advice - except for the last lady - about wet and dry.  Here I was told that it is very important to keep it moist.

 

I had 20 sessions of raditiation and skin started to blister during the last week.  The nurses at the radiation clinic started off treating the burn and when i finished a nurse visited me every day - we have a fantastic not for profit service here where nurses come to your home (for anyone not just cansurvivors) and they have continued the same treatment. 

 

Which is - I have my shower before they come and then I soak the burn area in a solution of 1 litre boiling water and 1 teaspoon of salt (made earlier in the day and cooled) using large cleaning cloths (straight from the packet), soaking them in the water and then laying them over the burn area and leaving for 15 - 20 minutes - rewetting them if they get a bit dry.  Used disposable gloves to protect from infextion.  Then the nurse applies a thick layer of parrafin ointment (dermeze - I buy a tub of it from pharmacy) to the whole area and I get them to go over the edge onto the good skin too because I can always feel it pulling on these edges.  they then put these squares of netting/gauze that are saturated in a thick parrafin ointment (called Jelonet in Australia) on the burn and then use non-stick pad dressings over the top of the whole area (including under the arm). 

 

We then try various methods to tape the dressing so it doesn't slip around (even tho the jelonet is very soft it still feels like its scraping if it moves around - the best method so far has been using a flexible tape that is called AsGuard flex or Fiso Fix ? and try to put it on skin that hasn't been treated.  To start with I also used a type of compression bandage over the padding, around the chest under the breast (only one in my case!) and then over the shoulder (I have an additional pad running vertically from collar bone down over the top of the other pad and this gives me extra protection esp for seat belts etc).  This made me feel really secure.  I stopped using the bandage once the burn on my thinner skin (under collar bone) had started to heal as this was the worst part esp with rubbing.  Until this week I was wearing this the 24 hours until the nurse's next visit.  Over the top of that we would put a little light stretchy top made from - wait for it! - incontinence pants. Smiley Happy The nurses at radiation unit showed me that trick - you just have to cut a couple of extra holes.  very soft and helps hold it all together.

 

I really feel for all those women who had been told to keep it dry - just having a shower before the nurses visit, which had the effect of removing the ointment, it was instantly painful and would stay painful until the ointment was applied. 

 

I was told that the radiation would continue to act for up to two weeks after the last treatment (in other words, the burn continues to develop) and it was quite miraculous how when that two weeks passed my burn suddenly started to get better.  

 

The ointment is very messy though and you need to wear old t-shirts etc because it does stain.

 

Another idea is to ask for a referral to the burns unit of your hospital so you can get the best advice.

 

good luck to all of you.

Member

Re: Advice for ghastly radiation burns please?

Hi Chata3070,  I had real trouble with burns under my arm and under my breast.  They gave me some intrasite gel and some melipex dressings on the last day of treatment and a note to give to my gp to get some more.  They told me it was better for the wounds to heal in a wet environment rather than letting them dry out. It took two full weeks for mine to heal with the gel being applied twice a day and a dressing change every day.  At one stage my whole under boob area was raw.  The skin is still very fragile but it has now healed over.  I took co-codomol painkillers too as it was very sore.  Can you have a word with your gp or BCN and see if they can give you something?  I feel for you it is horrible.  Good luck x 

Member

Re: Advice for ghastly radiation burns please?

hi I also have some bad burn especially in armpit area I even have broken skin? Is this fucibet prescription? Also can it be used on the broken skin? I appreciate and thank you in advance for your respons

Member

Re: Advice for ghastly radiation burns please?

Hi, sorry to hear other people are going through similar to myself.  I finished radiotherapy  3 weeks ago and I have been in total agony ever since.  I Have been using polymem dressings for 3 weeks and have been taking cocodamol tablets along with ibuprofen for the pain, however they don't seem to help. Sleep is non existent at the moment due to the pain.  Went back to breast clinic today because my local gp surgery had ran out of ideas, and there was no improvement in the last 3 weeks, to be told to carry on with tthe polymem as it was the best thing on the market for such burns, and my suffering will go on for at least another 8 weeks ! The underside of the breast is all burnt and lacking in skin, it is a side effect that I was not aware of.  After surgery in December 2016, wound breaking up, infections, chemotherapy, wound breaking up again, almost a year of my life has been spent in hospital, clinic visits and agony.  I am hoping there is light at the end of the tunnel for me and everyone else going through similar.  Love and hugs to anyone going through similar, you are not alone. Xxx

Member

Re: Advice for ghastly radiation burns please?

Hi all, I thought I would update you. I got seen yesterday by radiographer team, senior team leader and oncologist. They were all shocked at how bad my skin had become in a few days, said it was all broken and looked really painful. They gave me Flamazine to apply twice a day plus gave me oramorph oral solution for the pain. This has helped loads already in one day, I was able to sleep as i was so drowsy with it :-)

I'm also going to buy a cotton non padded and non underwired bra to help. So far had to go braless last few days due to the pain.

Good luck to you all experiencing this horrible side effect. Xx
Community Champion

Re: Advice for ghastly radiation burns please?

Zamir

 

Well thats them all done, I know you still have a lot to go through, hopefully not too bad, but the bells are ringing for you tonight loud and clear zzzzz

 

bell.jpg

Member

Re: Advice for ghastly radiation burns please?

Thank you all, it's going to be another painful night until I go to the hospital tomorrow. I have even tried frozen peas. Xx
Member

Re: Advice for ghastly radiation burns please?

I think I was allergic to the polymem dressing or it was just the healing process but they seemed to make everything worse. I noticed that under the very dry cracked layer there was pink skin and it was less painful. I socked in very hot water and rubbed the out layers off while in the bath, which is similar to what they do if you have burns (just not in a bath). I know they say no water but it was so painful until I had got that top layer off so I was willing to try anything. I also put dettol in the bath. All this was after I had finished rads so wasn't seeing anyone. I read calendula has had good results and used a mixture of baby napiers cooling chickweed bottom balm and bepathen lanolin really thicky. I wore an old support vest that got very greasy but it was useful. Hope some of this is helpful.
Community Champion

Re: Advice for ghastly radiation burns please?

Zamir

 

Yep that is the one I am on about there is one side that you place on teh skin but I cant remember if it the one with the lines on or not but it is supposed to help with the oozing xx

Member

Re: Advice for ghastly radiation burns please?

 
Member

Re: Advice for ghastly radiation burns please?

Thank you so much Sue and Helena.

I will take up your advice. Yes i think it's Polymem, it's a light pink colour foam padding with no sticky side to it. They said splash it with a bit of water and then put this on the sore peeling areas. The hospital nurses just changed my pain killers from paracetomal to co-codomal saying it's stronger but that's not doing much.

On some of the discussions here I read that Fucibet cream helps the burn areas. I have that cream at home so have applied a layer because I can't wait until tomorrow, I need some relief today. Let's hope it works. I'm hoping the stitching area is not infected because the skin under the peel area is bright pink, sore and bit of oozing.

Thanks again Xx
Community Champion

Re: Advice for ghastly radiation burns please?

Zamir

 

Was the dressing they gave you called Polymem, if it is ask them for some more and get a prescription off your GP, it will take a few days to come in so ask the rads team for a weeks worth, if that is what they gave you.  I had a rads skincare nurse who who specifically dealt with my skin and was not part of the daily rads team, it might be worth asking if they have one at your hospital and arranged to see them regardless of the fact that you will be finishing your rads.

 

Helena xx

Community Champion

Re: Advice for ghastly radiation burns please?

The rad nurses are very kind, but I felt not as knowledgeable. You need to see someone higher up the food chain, so to speak. Dont know if this would help but are you taking on enough fluid? You need to be drinking at least 2 litres a day.

Sending a very gentle hug x

Member

Re: Advice for ghastly radiation burns please?

Thanks Sue

I'm going in tomorrow for my 20th session and I will ask to see the team leader of rad consultant. I have been telling the rad nurses every day this week and I feel they don't understand the pain as keep saying there is nothing they can do other than advise me to keep it dry, take pain killers and a dressing. They gave me a small dressing which has run out now.
Community Champion

Re: Advice for ghastly radiation burns please?

Hi zamir

I'm so sorry you're having a bad time with rads. I would ask to see the team leader or the consultant of radiotherapy. I didn't suffer in the same way so I don't know if the barrier cream would suit you especially as you are being advised to keep it dry.

The rads will continue to work for 2 weeks after you finish and then it will start to ease off.

Hope you find some relief xx

Member

Re: Advice for ghastly radiation burns please?

Omg I'm so glad I have found this discussion. I am in so much pain from rad burns and been feeling so alone. Friday was my 19th session, my neck, underarm and breast area is all burnt, gone really dark and is peeling. I am unable to sleep with the pain, any little movement is painful. The stitches area is the worst, it's weeping. I am also getting nerve pain / electric shocks kind of pain.

The rad nurses just told me to keep it dry, not apply any creams and just take pain killers. I went to badgers clinic yesterday but all they did was give me stronger painkillers and some dressing. The sticky tape with dressing just pulls skin off. I tried aloe Vera jelly but it just dries up and sticks. Nothing is helping, the pain is too much. I'm dreading how long this will go on for.

The new skin under the peeling areas is very red, sore and sticky.
Community Champion

Re: Advice for ghastly radiation burns please?

Hi meri

Its the barrier cream. Really soothing. Hope it works xx

 

 

Member

Re: Advice for ghastly radiation burns please?

Thanks Sue Smiley Happy

 

I went to boots and got three different burn creams, one cooling, one antiseptic and one mild steroid.

 

But bit wary as skin so sore so testing on inner arm first.

 

I found the medihoney on Amazon, is it gel or cream you used? or barrier cream?

Community Champion

Re: Advice for ghastly radiation burns please?

Hi meri

I was given a barrier cream called Medihoney by the radiotherapy nurses and it was brilliant. Sadly only have one small sachet left, but can pop in post if interested. Xx

Member

Re: Advice for ghastly radiation burns please?

I finish rads today and also have awlful burns.

 

My nipple is red raw and oozing

 

Skin under breast about to break.

 

The stick on dressing caused allergic reaction so just have pink foam padded things that don't stick so strugling to keep in place, ok when bra on.

 

I have hardly slept last few days as so sore and breast painful inside.

 

I have not been given any burn cream, I will ask about that today.

 

I hosnestly just crying inside as though radiologist lovely they don't see whole picture and our journeys to this stage. I am worn out yet been told skin and breast will get worse over next two weeks Smiley Sad

 

I am reading all this thread for ideas thank you Smiley Happy

Community Champion

Re: Advice for ghastly radiation burns please?

Sandy I went to GP with mine ,got antibiotics and special dressings ,they were more helpful than the Rads team.Jill.
Community Champion

Re: Advice for ghastly radiation burns please?

sandy

 

give your breast care nurse a call and ask her to check with the oncologist if Polymem dressings will help you,  I was given them at my hospital as my skin was breaking down a little, it is a dressing that you dampen and then place on the skin and there is something in it which apparently helps with the radiation burns.

 

You could also go to your GP and get them to check it out, as you can get it prescribed from your doctor but they may have to order it in, do you have a medical exemption certificate, if so then you will not have to pay for prescriptions for the length of time you are on cancer treatment.

 

Helena xx

Member

Re: Advice for ghastly radiation burns please?

Hello Everyone,  I too have the most horrid rad burns and when I said to the radiologist was told "that was normal, and that the radiologist would decide if they needed treatment".  Thanks but it is my body and I know when I am suffering.  Got no help at all even at the end of the sessios.  Am pretty disgusted with the way I was treated and ignored. Went away and suffered for a complete week and was in such pain that I went to A & E who told me they could not treat me because they hadn't been trained in these sort of burns.  The nurse very kindly went to the oncology on-duty doctor and asked what could be done and was given a name of the duty oncologist the next day and told me to come back and see the duty doctor the following day at a given time.  I did this but no one knew anything about this and saw the MacMillan nurse who called the on duty oncologist to see me because it was so bad.  I was then examined and given some cream which made it worse!  Three days later I stopped using the cream and emailed the Mac nurse to tell her. Never heard from her or got any advice.  So phoned the following day and was told she wasn't at her desk but would phone me back.  She did phone back at the end of the day so couldn't do anything and was off the next day but phoned the day after.  When the Mac nurse phoned back she said that the swab she took had come back and I had a fungli infection as well as the burns and if I came in they would give me a cream to deal withn this.  I went in and was given Canesten which I could have bought at my local phamasist.  No treatment for the burns though. So fed up with this treament I will never go back to that hospital ever again and am not even sure if the Canesten is the right treatment.  Help! 

Member

Re: Advice for ghastly radiation burns please?

Hi Snail888,

I had bad burns from radio. Around the time I finished radio a nurse at the radio centre gave me a cream called Flamazine. It worked really well, took a few weeks to heal.

Wishing you well with your recovery,

Seabreeze (now 3 years on)

Community Champion

Re: Advice for ghastly radiation burns please?

It's July last year .I ended up with an infection in skin that broke down quite badly under my boob.GP was very helpful and also sent me to see the practice nurse to get the most appropriate dressings which were Melonin dressings shiny side down .Was told to put nothing on the skin at all once it had broken down just the dressings .
Member

Re: Advice for ghastly radiation burns please?

Debbiey's post is/was July 30th? I don't understand these dates?!
Member

Re: Advice for ghastly radiation burns please?

My armpit skin is almost black and so so sore. The rads team gave me a single poly mem dressing which while it helps stop the rubbing the products on it seem to make the skin worse. My rads team told me to see go if there is a problem now I've finished.
So I've resorted to nappy creams such as bepanthen and calendula. They seem ok but I'm wondering if a trip to the go woild be a good idea ?
Member

Re: Advice for ghastly radiation burns please?

That's a joke.  They left me in pain to the point I said that if they didn't give me something

for the pain and peeling, we weren't going to be doing any more radiation.

This is the problem with getting treatments of any kind that cause pain, burns, etc.

The medical teams just think you are supposed grin and bear it.

Member

Re: Advice for ghastly radiation burns please?

I am still getting skin breakdown 7 years on - anyone else with problem?  Apart from Flamazine (a burn cream which eases but not cures) GP is running out of ideas.  Can anyone else help?

Member

Re: Advice for ghastly radiation burns please?

That is; place the rolled up dressing over the mepilex to help seperate the best from the skin under it before placing a sling on. Someone will need to help with all this though.
Member

Re: Advice for ghastly radiation burns please?

Keep the sores covered with Mepilex dressings at all times, just cleaning it nightly wuth sterile gauze and warm water; no washes or soaps. Dab the wounds-dont wipe. Once a clean dressing is on, roll up a sheet of 20cm by 20cm Zetuvit absorbant dressing pad and then try popping a normal arm sling onto your breast and tying off round the back of the neck, but place the material that's on the outer side of the affected breast under the armpit before tying off at the back of the neck. It's the longer edge which goes along under the Breast. The material left flapping over the Breast can be easily twisted by its point into the material across the front of the chest, secured with string tied tightly to stop it slipping. It's helped my mum.
Member

Re: Advice for ghastly radiation burns please?

Hi, I to have a rads burn under my breast. I have had 3 types of cream from the hospital and doctor which didn't work. So i started using Propolis gel last week 2-3 times a day afer washing with Simple shower gel. My wound is now a quarter of the size and healing nicely. Hope this helps. Janet x

Member

Re: Advice for ghastly radiation burns please?

Hi all

The BCC specialist clinical nursing team have looked at this thread and would advise any one having problems with burns after radiotherapy treatment to contact their radiotherapy unit for information and advice.

I hope this is helpful.

Best wishes Sam, BCC Facilitator.

Member

Re: Advice for ghastly radiation burns please?

hi, I had burns too, mine came out about a week after having finished my radiotherapy, I had a large one under my arm, which was raw and felt like someone was dripping vinegar on it, obviously not able to use deodorant and the warm weather made it a lot worse, my GP gave me Fucibet cream (fusidic acid/betamethasone) 30g I applied it 3x a day after the first day it felt A LOT better by the third day the redness and soreness had almost completely gone, it is now not sore or red, it is worth giving it a try, it worked for me.

hope you get some relief its horrible I know, best wishes to you Liz xx

Member

Re: Advice for ghastly radiation burns please?

Thanks for all your helpful suggestions. As you can see from my previous post my cry for help was made in the middle of the night as I couldn't get to sleep and I did as suggested and just spent the night lifting up my boob to the cold air of the fan. I must admit it did help and will do the same tonight. Wished I could have done it today but would have been arrested if I had wandered round Tesco with my boob in one hand and a fan in the other. lol

Member

Re: Advice for ghastly radiation burns please?

hi chrissy, I was just thinking that something on those lines might work, or muslin squares from a baby shop cut up. I think i would put them all through the washing machine with no detergent first though.

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Member

Re: Advice for ghastly radiation burns please?

Hi

I am around 3 weeks post rads now and I had the same, a nasty rash first appeared UNDER my breast where the breast meats the chest and it turned into a very sore spot. It gradually opened up and it was oozing something. I did not put cream on it because it made it worse, but I did what the rads nurs told me and put a rolled up handkerchief (not used lol), a cloth cotton one, underneath and in between the folds. This worked for me and now it has cleared up. I also washed it in simple shower gel. I thought fort one minute I was going to get an infection, but it cleared up on its own. chris

Member

Re: Advice for ghastly radiation burns please?

you might have a point there.