Thursday, October 7, 2010


6th and 7th October 2010

It is dreadful to never have a night without waking to either go to the toilet, in pain, with joint stiffness or nightmares. When you don't sleep well you wake feeling tired and then to have to try to function during the day, this is not always easy, however I am not one to sit back and feel sorry for myself even when I honestly feel atrocious. I always try to do my best and stay totally positive and focused.

Wednesday was supposed to be overcast and wet but to my surprise the sun was shinning down from the sky, it was like everyone in heaven was smiling down on the Earth and delighted with what they saw. We played Upwords and Guess Who, we sorted through Christmas decorations to see if we needed anything new for this year and Nalani and Jarrett helped me print out photographs for my photo frame for Mum.

In the afternoon we made Mum a Chocolate Mudcake for her Birthday, it smelt so mouth watering scrumptious when it was cooking in the oven and it looked a treat once it was iced with a sweet, chocolate fudge icing. We could hardly wait to taste it at dinner that night, we were having dinner for Mum the night before her Birthday because on her Birthday it was running training so dinner is later.

We had a barbecue chicken and salads for dinner, Mum loves salads especially potato salad and coleslaw so we made sure we had those. Then it was time for the cake, Mum was amazed, I thought she might cry, we decorated each piece with strawberries and cream, we gave Mum extra cream and strawberries! It tasted even better than it looked and everyone was left with the feeling they had just tasted a piece of paradise.

After dinner we gave Mum her presents and she actually did shed a tear when I gave her the photo frame that I had made, she put it on her bedside table so she could look at it just before going to sleep and first thing when she wakes up, the photographs I put in it were one of me with Theodore and one of Mum and I. We also gave her a hair straightener, earrings, perfume and a top. Dad gave her a voucher to have her hair done, she has not been to the hairdressers to spoil herself in over twelve months so she really deserves to have something lovely done for herself. Nana and Pop gave her a really beautiful hand bag, purse and a skirt. Mum said she really loved all her presents but the greatest gift was been able to be with all the family this year to celebrate her special day.

We watched the Commonwealth Games then on television, I am enjoying watching the cycling and was hoping to be able to watch the athletics but that was on way too late for me although with waking during the night I could probably sit up and watch the Games to put myself back to sleep.

Light rain gently fell from the sky overnight, providing a refreshing drink to all the flourishing Spring lawns and gardens. The morning was overcast which I was disappointed about because I wanted the sun to shine brightly on Mum's Birthday, eventually the clouds departed as they were whisked away by a chilly Spring breeze and the sun shone brilliantly for Mum.

I had physiotherapy with Rhiannon and I could hardly wait, my left wrist had given me grief during the night and perhaps due to the rain, it was extremely troublesome this morning. Rhiannon worked on my ankle which is still painful to put too much weight through and we mentioned that my heel had also been giving me some pain so she checked it only to discover that it was all bumpy, she described it like lots of rice bubbles, this is caused from my ankle injury, muscles and nerves in other areas become affected. Then she worked on my wrist and even though it was painful when she checked it, when she massaged it, I felt such a relief from the pain, it was marvellous. She then gave me some exercises, one with a rubber band and one with some play doh it is to help maintain muscle strength even though it is painful so that I will be able to grip things like cups and my rollator. I don't know what I would do without Rhiannon she is like a guardian angel, looking over me, helping me when I need it most.

We had time for a game of Upwords before having to go to the doctors for my blood test results, they were extremely interesting. It appears that I have an elevated ferritin level which can occur when you have high doses of chemotherapy but it should have come down by now, it can then be indicative of an infection, inflamation or liver disease. I also have a low serum/plasma folate level which is often associated with malabsorption. My vitamin B12 level is elevated and this can be from liver disease or myeloproliferative disorders. I have low phosphate levels and should be having a phosphate supplement and high Urea levels. My thyroid function in also on the low side. My doctor wants me to have the blood tests redone in one week to see if there is any change in the results and then wants to do further investigations. He thought that Sydney should have picked these up when I was there, he is particularly concerned about the folate and ferritin.

Nalani also had to see the doctor because her wart that she had frozen and then cut has come up again, it is actually a little painful so she had to have it frozen again and she has to go back in two weeks to have it cut and then re-frozen again, hopefully this will get rid of it permanently although she may have to have it frozen a few more times.

We had running training in the afternoon, Jarrett ran fantastically and with no asthma problems, he was able to use his breathing techniques and is finding it easier each time. We actually noticed that one of the Australian Cyclists was using breathing techniques similar to Jarrett's prior to their race.

Jarrett looked up the results of the athletics results and found that in the 5000m that the time he ran of 15:58:00 would have placed him in 20th place, his time beat the time of three athletes that were in the Commonwealth Games, that really gave him confidence and inspired him. Melissa Breen who runs at the AIS was in the 100m heats and she has qualified for the finals, it would be incredible if she won a medal, we have seen her run often and she is simply magnificent.

My hand is aching but I just had to type my Blog it is so important for me to share this journey with you all.

1 comment:

Anonymous said...

Hi Dainere , hope your mum had a nice birthday, oh wow , I can taste that cake myself scrumptious. Yes the games are great arent they, I love the commonwealth games , even more than the olympics.

So glad you have been able to see Rhiannon.

lets hope that your fresh blood tests can give an indication of which way to go from here. , you must feel, lioke a pin cushion , i know I did.

On a brighter note , must just tell you that we have a friend in Peru , she has just had a baby amd we rang her this morning , it was sooooo nice to speak with her she was in good spirits.

Look forward to reading next weeks blogs. take care love stuart XXX