Radiation Burns

Happiness keeps you sweet

Trials keep you strong

Sorrows keep you human

Life keeps you humble

~ unknown





Since having cancer I have certainly learnt a lot about my tolerance to pain.  Before cancer I always thought I have pretty good pain tolerance.  Just as an example, there was the time I was on a bushwalk with a small group in Kakadu.  It was a 6 day walk with full packs (food, tent, cooking utensils).  I think mine weighed about 23kg.  On the second day during a lunch break I was swimming in a lovely crystal clear, fast flowing stream when I kicked a rock and broke a toe.  Not a good thing to do when you are way out in the bush and there are still 5 1/2 days of walking to go.  It was the third toe, so I strapped it to the second one, took some paracetamol and continued on the walk.  After a couple of days I thought I had better replace the tape.  The wet season had lasted a bit longer than usual so we were walking in water a lot of the time.  No way to keep the feet dry.  As I pulled the tape off a large section of skin came off with it.  Gruesome and leaving a red raw surface.  More pain.  Well, I finished the walk and managed to enjoy it despite the pain.  I am just telling this story to show that I can tolerate a certain level of pain.  On Xray when I got home there were three fracture lines in the toe, fortunately no displacement of the bone fragments which no doubt would have made it a lot more painful.  The photo, below, is actually from another similar walk in the Bungle Bungles (Purnululu National Park)



The point is I am not that pitiful when it comes to putting up with pain. There have been some procedures or treatment since I have been diagnosed with cancer that have been extremely painful.  A liver biopsy early on was one.  The thing I find strange is that the doctors don't really prepare you for it.  With the liver biopsy I was told why it was painful only as it was happening.  The local anesthetic that is given is only in the skin, they can't put local in the liver capsule, so when the relatively large bore needle gets to the liver it is very painful.  There have been other painful moments along the way;  trans arterial chemo embolisation of the liver, the first time I was given Zometa, severe gastritis (needing hospitalisation and opioid pain relief) and Removab treatment, active metastases in the spine.

The radiation treatment itself deserves a short mention and a photo.   There is always a planning session for radiation where everything is lined up so that the treatment is given in the right spot.  It is obviously important to then keep very still and be lined up in the same position for each treatment.  To keep my head very still and position it the same each time, a 'plastic' mask was moulded around my face in the planning session.  A hole was made over my nose area and then a wax block was made to fit over my nose.  This is done because the radiation works better if it goes through a solid surface rather than air.  For each subsequent treatment I had to lie on my back with my head placed in a head rest and the mask placed over and bolted tightly down so I could not move my head at all.  The wax block was then placed on my nose and the measurements all checked and the radiation would start.  I had 15 treatments.  These were daily with weekends off.

Now I have second degree radiation burns to my face.  It is miserably painful.  I was warned of redness, peeling, ulcerations, blisters, crusting - but no mention of severe pain.  I was given ointment and drops for crusting and "soothing".  Every ointment I have tried causes intense stinging before the so called relief.  Then the relief only lasts a short while.  After a couple of days of pain and trying my own various concoctions, particularly fresh aloe vera plant, I could get no lasting relief.  I rang the hospital and they got me to come in and put a dressing on the burn.  This stopped the burn from drying out and stopped oxygen getting in. So a lot better but not great.  I then discover that there is local anaesthetic gel that can be put on.  Again a bit of improvement.  Nothing fabulous though but at least I don't feel like curling up into a foetal position in bed most of the time, not that that would have helped because night time in bed is the worst.  I have to get up during the night to change the dressing

Truly I do not understand why the radiation doctors and/or nurses can't suggest all this helpful treatment from the get go.  Looking on the internet and at various forums this pain issue with radiation burns is common.  On top of that the face has lots of superficial nerve endings so it stands to reason that damage caused by the radiation, which really is the whole point, is going to hurt and hurt a lot.  The only warning I got was that the damage would continue to get worse for about a week after the actual radiation treatment had finished.  It is a week today.  Hopefully I am at the turning point and the pain will start to subside.  There are other drugs apart from paracetamol I could take to help with the pain.  I am taking the maximum recommended amount of paracetamol now and don't want to go over as I don't want to burden my liver, not after having had metastases there.  The problem with stronger analgesics is that they invariably cause constipation.  I already have problems with that due to other drugs I am on so don't want to exacerbate that issue. 

The least painful and least itchy irritated time is just after I have cleaned up the burn, applied aloevera, solugel and xylocaine gel and the dressings.  It gets itchy in about an hour and then it is downhill from there.


On that note I will go and take the dogs for a walk before I get to the painful bit.

Surviving and Thriving

Linda

Radiation and more

Look for the beauty in life, in people, nature 

and most of all in yourself.

~Lee (BCNA) 

 Even though we are still having some cold days, mostly the weather is warmer and certainly drier.  I am really enjoying the garden and the park across the road.  I have a white waratah in the garden that is flowering (see picture above), the Kangaroo Paws are flowering even better than when I last wrote and there are even some red and green ones that I thought had died that have come up to say hi.

The morning walk with the dogs brings me a lot of happiness.  They really know how to enjoy themselves, such happy, enthusiastic little beings.   We took them up to the Blue Mountains for the day (that's two weeks in a row) and were again blessed with wonderful weather.  The dogs were thoroughly delighted with the new smells, certainly a lot more than the view that we humans were so entranced with.

Last weekend I went to Tea Gardens again for a few days  in between radiation treatments to visit my mother.  The beauty about that area is that it is not yet overdeveloped and has a river,  stunning bay and ocean beaches with lakes and national park nearby.  It is wonderfully quiet compared to Sydney but still has some lovely cafes along the water.  Great variety of birds and can hear a different  frogs at night.  The only ones we get at are the Common Marsh frog which sounds like a dripping tap.  Get some different sounds in the park.


Finished the radiation treatment and the predictions of effects are coming true.  Very red nose and surrounding area, severe ulceration of upper gum and inside upper lip as well as the inside of my nose is very painful and crusty and bleeding intermittently.  Using aloe vera liberally plus saline nose washes and various other concoctions up the nose and under my lip.  Nights are the hardest.  Another week or so of symptoms and things should start to improve. 

On Tuesday I saw the radiation oncologist, my usual oncologist who directs the chemo and my 'alternative' holistic GP.   The radiation oncologist said all was going as expected and to see him in a 6 months for the bcc unless I was worried.  My regular oncologist was about the same i.e. playing the waiting game. The previous week I had  a blood test to recheck CA15.3 and much to my consternation it was now 177.  Scary!  Now it could be skewed by the radiation treatment and the inflammation that has caused, so retest in a month and reassess then.  I went off the thalidomide on the 2nd of September to see if it helped with the peripheral neuropathy and I am due to go back on it at the end of the month.  There appears to be no alternative to the thalidomide (for antiangiogenesis) other than maybe avastin, which is an iv drug that I have been on before and it gave me very bad gastritis, so bad in fact that I was hospitalised.  Don't really want to use that again.  It would also mean having the infusions at a clinic as I would be unable to buy the drug and do the infusion myself. 

The GP came up with a good plan for working out the nausea.  He thinks it is gastritis and likely  due to one or more of the supplements I am taking or just the large volume of tablets (now up to 88 per day).  As more side effects start to develop from the anti cancer drugs additional supplements get added to try and counteract those effects.  That is on top of the various supplements that are 'anti cancer', immune boosters or supportive for various other body organs or functions.  Part of the plan is to not take any tablets other than Fareston for a few days, take slippery elm and when nausea subsides we have worked out a 4 stage re-introduction of the other tablets.  Can't do it one by one as it would take too long.

This week I am going to take it easy and let my face recover from the radiation.  Next week we are going to the Blue Mountains with the dogs for a full week.  Fantastic!

Surviving and thriving

Linda