Radiation....

Patience is the ability to let your light shine

after your fuse has blown.

~ Bob Levey

Radiation was daily for 10 days with a weekend off in between.  The treatments were short and not much of a problem other than issues with muscle cramps.  For the treatment I had to lie face down with my head slightly up in a foam support which arched my back slightly.  I then had to put my arms above my head which exaggerated the arch.  I have had problems with muscle cramping in my legs, feet, hands and back (side effect of something I am taking?) and there were a few days when I was having trouble staying in position for the radiation.  The idea is to lie perfectly still once you are in position as the radiation beams are aligned to hit the right spot.  Some days it took a few goes before I could manage that.

Side effects were not what I expected.  No skin burning but my eosophagus was obviously damaged and it became very painful to get food through into my stomach for about two weeks or so after treatment.  Nausea was also a problem from early on in the treatment and now is intermittent, some days are fine other days are not so good.  Not sure now if it is still the after effects of the radiation or if the new anti estrogen drug (Fareston) that I started immediately after radiation finished.

The one side effect I did expect and got was tiredness.  The nausea and tiredness are in any case ongoing problems that I have really had for about 18 months or so, well actually the tiredness has been a problems for about 2 1/2 years.  I am taking so much stuff and it is difficult to know what the cancer is actually doing so that it I can't really pin point the cause of either the nausea or the tiredness.  Is it from treatment I have had or from treatment I am on now or the cancer itself???  I think that more than half the issue with cancer treatment is dealing with side effects rather than the actual cancer symptoms, but who knows.  Oncologists don't seem to want to discuss side effects much other than prescribing more drugs that cause more side effects.  For example, the treatment for nausea causes constipation.  If I then take something for constipation I get cramps and/or diarrhoea.  So I just cope with low grade nausea (no vomiting) so I don't have to deal with constipation etc.  Same with most of the stronger analgesics, they too cause constipation.  Anyone who has had really bad constipation will know how bad that experience can be, and although I am able to give myself enemas, it is a pretty unpleasant experience all round.  So  I manage with just paracetamol which does not have that unpleasant side effect but takes the edge off the pain.

One of the main reasons for radiation to bone metastases, especially in the spine, is for pain control.  In my case it was also necessary to preserve the vertebra as the tumour in T9 was so extensive.  In respect to the pain the treatment has worked.  During the treatment I had reduced pain which returned soon after.  Since then however there has been further reduction in pain.  I am not getting any radiating pain going around the rib cage to the sides and front and the back pain has definitely lessened.  Hopefully that is a sign that the radiation is working.  Half way through the treatment I found out that the treatment is only effective in 70% of cases.  Why can't the oncologists fully inform you prior to treatment.  I would have still gone ahead but the lack of information is frustrating.  It is like getting blood from a stone.  Very little information is volunteered.  If you don't ask the right questions you just don't find things out that may be pertinent.  The problem is I don't always know what the right questions are even though I do a lot of research and participate in breast cancer forums.

Today I had a blood test to check my red & white blood cells, kidney and liver function and to see what the cancer marker CA15.3 is doing.  If it has gone down that would be a really good sign.  If it goes up it doesn't really clarify anything much.  It may mean the cancer is progressing or it may just be that the cancer that was radiated is breaking down and releasing the proteins.  So it makes it difficult to decide on the course of treatment.  I am feeling relatively ok, some days are even quite good and I feel almost 'normal'.  So do I then continue just with what I am on now and risk that the cancer is progessing or do I start chemotherapy and feel like shit for the next 6 months?  Even then that might not work either and then I have lost six months of quality.

Meantime we are planning a little holiday.  On the 3rd April we are renting a campervan and spending 2 weeks on the road.  We are going north along the NSW coast to Byron Bay and then heading inland a bit and coming back down.  Intending to keep a very leisurely pace and look at everything that interests us.  We also have a few friends on the way we will visit and we plan to just chill out.  Never traveled that way before but we both like camping and I imagine this will be a more comfortable camping trip.

Went to visit my mother again in Tea Gardens last weekend and the weather was stunning.  Glorious sunny days and lovely and warm.  Had a picnic lunch by the river, a swim in the bay (someone got bitten by a shark there a few days later - yikes), and iced coffee at our favourite cafe on the water - the Boatshed.  All in all a lovely relaxing time spent.  It was also the first anniversary of my fathers death so it was good to spend that time with my mother.  We had dinner at a restaurant on the river that dad loved going to, nice to remember him enjoying himself.

Now will wait and see what next week at the oncologist brings.

Surviving and thriving

Linda