Treatment Side Effects

Don't save anything for a special occasion.

Being alive is a special occasion.

~ anonymous



It is 10 am and I am still in bed.  Usually I get up by 7am do some yoga and meditate then shower and have breakfast followed by a lovely walk in the park with the dogs.  Today I have a very bad head cold with lots of coughing and snuffling, well not so bad now after dosing up with flu tablets.  I took those tablets yesterday as well and it made me realize how much pain I usually put up with during the day.  The flu tablets contain an analgesic and it is really making me feel much more comfortable.  Normally I only take pain relief medication at night so I can sleep, during the day I just try and distract myself from the discomfort.  Today I will write a bit about side effects, but first a little update on other things.

My sister came over from the US for two weeks which was great, lovely to spend time with her.  We spent some time with our mother and did some fun day trips including whale watching just outside Sydney Harbour.  It was a perfect sunny winters day with incredibly calm seas.  We saw several pods of Humpback Whales, none breached but one rolled on its back and waved its flippers in the air.   It was a fabulous afternoon.  My sister returned to the US on the 5th July.  It is always emotional saying goodbye.  Have just come back from a few days on Magnetic Island.  We were both very tired so it was nice to go somewhere warm, quiet and easy.  Even had a swim in the ocean at a lovely little beach even though the water was very cold.  Also found a couple of places that made fresh vegetable juices and healthy lunches.  Still came back with a cold though.  Probably caught off someone on the plane on the way up to the Island.

As far as my cancer and the last scan goes I did go and see the radiation oncologist who viewed the scans and the report and decided that the active tumours were in the collar bone and on the rim of the ilium (pelvis).  The rest just seems to be arthritis.  This would seem to indicate that current treatment is holding the cancer in check reasonably well.  Cancer markers are continuing to increase, last month up to 68.  I will have another test in the next few days and I have an appointment with the oncologist next week.

So, at the moment I am concentrating on continuing with current medication and dealing with the side effects.  The peripheral neuropathy is getting worse and is affecting my legs up to my knees with the feet badly affected.  It is becoming hard to balance on uneven ground and my feet get very sore if I walk any distance or if I am on my feet for a long time.  It is weird how my feet can feel numb and painful at the same time.  Muscle cramps are continuing although they do seem to be a bit better since trying a new, and very strange,  remedy - a cake of soap in the bed at night.  I have no idea if the improvement is coincidence or real but it is a great relief not to be leaping up out of bed with severe and painful muscle cramps at regular intervals during the night.  I get up and stretch my calves only to have the front muscles cramp.  I also have cramps in my feet, hand and different parts of my back and neck.  I have to be careful about twisting my back or neck as it can cause severe muscle spasm.  Most mornings I do some yoga to try and stretch the tight muscles but it can exacerbate some of the cramping on the opposite side to the one I am stretching.  I think overall the yoga does help.  Joint pain is an ongoing problem particularly hands, hips and knees.  Then there are general aches and pains throughout my body.  Headaches are generally mild and of short duration.  My eyesight is getting worse, possibly the cataract I am developing as a side effect of the hormone treatment.  I don't think my mind is as sharp as it was either but not sure if that has anything to do with the drugs.  General lethargy continues to be a problem probably a side effect of the thalidomide, at least it helps me sleep.  I still get pain in my back where I had radiation on two tumours in the spine from time to time.  I suppose that is the bone still healing (I hope).

Next on the agenda is to see what the cancer marker is doing and to see the oncologist and reassess current treatment and timetable the next scan/test.  Meantime I have just started a new supplement that is supposed to help heal the damaged nerves and alleviate the peripheral neuropathy.  As this is starting to cause some disability  I will also discuss this problem with the oncologist.  It seems to be related to when I started the hormone treatment, Fareston.  It could be a cumulative effect as it is also a side effect of the thalidomide and zometa that I take.  The alpha lipoic acid and p-5-p don't seem to have helped.

I have started a course on Mindfulness which runs over 8 weeks which I am hoping will help me be more in the present and worry less about the future.  The homework for that at present is body scan meditation which I often do anyway.  I am already a lot better about enjoying day to day activities and the little things in life.  Funny how a life threatening illness can do that for you.  I am really enjoying doing my cross stitch embroidery.  It is very relaxing and keeps me in the moment while creating something I like.  It is also physically manageable, just the odd cramp in my hands.

Despite the cancer and the side effects I am in pretty good shape.  The 3 year anniversary of my diagnosis has passed and I am still here, that's already a year past the original prognosis.


Surviving and thriving

Linda