FAMILY AND COMMUNITY PUBLIC HOLIDAY, PHYSIOTHERAPY, JARRETT'S SPEECH PATHOLOGIST AND A PAINFUL WEDNESDAY

27th to 29th September 2010

As Canberra has seen another dip in temperature I sit typing this entry trying to distract myself from my acute pain, I guess the change in weather has caused it, my right ankle, knee and hip and so tender and my knee and ankle are swelling as if they were a balloon been filled with a breath of air.

Monday in Canberra was a public holiday for Family and Community Day, families took the opportunity to spend time outdoors together in the splendid sunshine. Dad had to work unfortunately so we did not get to have the day as a family.

Nalani was extremely excited because she was going to Tuggeranong to the Sanity Store for a meet and greet with Short Stack, where she waited in a line for over an hour, finally getting to see Shaun, Bradie and Andy who are the members of Short Stack, she had their new Planets CD signed and had a photograph taken with them which is now her wallpaper on her computer screen.

While Nalani was on her marvellous adventure Jarrett and I played a game of chess which Jarrett won, then Mum, Jarrett and I went to the school oval and played a game of cricket, we all had turns at batting, bowling as well as fielding although fielding for me is quite difficult, you can't move a wheelchair around on the oval very well and certainly can't go for a diving catch, with a somersault at the end like Jarrett does. We had a terrific time, except a fierce wind came up and the ball was being blown around everywhere so we decided to call it quits.

We played Upwords when we came home, then went for a walk to the Gungahlin Town Centre for some milk, when we were coming back I had another seizure, we were all talking and then the next thing I knew Mum and Jarrett were lightly shaking me and asking me if I was okay, apparently my head had dropped when I was being pushed in the wheelchair, I felt really fatigued and had the pins and needles through my right hand and arm again, these lasted for a few hours afterwards.

In the evening as I was playing my Nintendo DS I developed the most dreadful stomach cramps which made me feel really ill, I went to bed with a heat pack on my stomach, as you can imagine I woke throughout the night with the pain, perhaps it was from something I ate, if I eat too much cheese or eggs I find that I suffer from these type of stomach cramps, we had had a delicious baked macaroni cheese for dinner, it had lots of cheese, cream and eggs in it so they must have been too much for my stomach. This is an issue that the doctors are still investigating and have no answers for me as yet, perhaps it is from the chemotherapy or another medical condition that has appeared.

We had a funniest home video moment although it wasn't really funny until afterwards at the time it was actually a little frighening especially for Mum. We have a sandstone coffee table with a thick rectangular piece of glass that sits on top held on with suction caps. Mum was bringing a kit kat chocolate to me and she misjudged where the edge of the table was, she banged her knee into it, fell, as she fell she knocked the glass with her arm and it flipped which was quite terrifying as it is so large and thick, the tissue box and coasters went flying and the glass landed on Mum's back. Mum was not injured, just a little bruise on her back and knee and a little embarrassed, which is a miracle really, it was just the most freakish incident. When we knew that Mum was actually fine we all burst out laughing even Mum, then Jarrett decided to do replays of the event and that made us laugh even more.

Tuesday I still had the pains in my stomach, panadeine and heat packs were not helping relieve it, I guess though having the stomach pain took my mind off my knee and ankle pain for a while which was still there but the stomach pain was much worse. As the morning progressed I think the medication kicked in and the pain dissipated slightly which was a relief as I had physiotherapy.

Rhiannon did some work on my ankle and knee then while I was holding onto both her hands I had to practise some walking, I had to walk around three cones, this is to try to help my balance. My ankle was extremely painful while I was doing it although I was not putting full weight on it as it still has not healed properly yet from my fall in Sydney at physiotherapy, because I want to progress I pushed through the pain, I think when you really want some improvement you find that inner strength. However when we got home I paid for it, my ankle had swelled and was throbbing with pain, I used ice to assist with the swelling but had to wait until it was time for my next pain medication.

In the afternoon it was Jarrett's appointment with the Speech Pathologist, it was an hour appointment, she said he does have vocal chord dysfunction which is the common American term for it but in Australia it is also known as Paradoxical Vocal Chord Movement (PVCM), this means that his vocal chord randomly closes instead of opens when he is breathing during his running. We were shown a model of a throat and vocal chord and she explained it all, it was really interesting. He then had to do some exercises which closed off his vocal chord and Mum and I got to do them too so he wouldn't feel awkward. Then we were given different exercises to help open them up again. It was incredible how it felt so different when they were opened up, I can now understand how frightening it must have been for Jarrett to have it happen. We were told that no one can actually die from having it happen but you can have a lack of oxygen because of it and pass out. He has some exercises to practise every single day and ones to practise when he is running, he has to find out which ones work best for him. Within a month he should have good control over the condition and hopefully will not have such a severe attack as he did at Nationals ever again but if he does he has techniques he can use to assist and it will not stop him from running which was the most important issue for him. By practising his exercises everyday it will most likely help him to be a better runner and could also reduce his reliance on his asthma medication. He has to report back to the speech pathologist in a month and then she will decide whether to review him then or wait a little longer. I wish that my pain, fatigue and seizures could be fixed as easily as what Jarrett's problem can be. He does have to be dedicated to doing the exercises every day though or it will take longer to fix, he will have to do these for the rest of his life.

Tass, my number one salesman came and visited last night, he brought a magazine called Country Style to give to me, a reviewer called Annabel had written a review on my book in it, she said that my book is written with clarity and precision and is candid and uninhibited and is a brilliant guide for patients and their families and friends and she hopes that it is chosen by High Schools as a study text. When we study text at school sometimes they are rather boring, I hope that if my book was a study text at school that the students reading it would find it inspiring and interesting.

A southerly change engulfed Canberra late yesterday and as a result my bones and joints suffered, my whole right side of my body ached and my left knee and hand were also painful. Then during the night my head throbbed where my two scars from surgery are, this has not occurred in a long time, even to lie on either of them was like placing my head on a pillow of nails. A lack of sleep made me feel nauseous this morning, even my cup of tea did not sit very well on my weakened stomach. I tried to do my physiotherapy exercises and ended up in tears because it absolutely hurt to do them, how frustrating, a change in weather caused this many difficulties.

Pain killers offer some relief but it is dreadful to have to live on them every single day, but then again compared to the toxic drugs I had to endure for my chemotherapy I guess they are nothing. I have spent today quietly at home trying to find ways to distract myself from my constant pain. It is Tinkerbelle's Birthday on 14th October, she will turn one and I decided to make her a rainbow pom pom to play with. We watched a comedy movie, a good laugh is always good medicine and relaxing can often assist pain, I even try imagery, where I try to visualise a beautiful place, a rainforest with trickling water, fresh, moist air and wildlife singing their sweet harmonies, but then the pain wins through and takes the vision away.

I have been asked by an extraordinary lady called Christine who is working on a project called Australian Inspiration to provide a couple of my quotes for a book that she is putting together as well as a register in the form of a website which is to be launched on Australia Day 2011, the register will celebrate the collective voice and spirit of Australia. I am so very excited at the prospect of assisting her in her project, she has already used the title of my book as one of her favourite quotes. She is funding this project as a gift to the Nation and I think that is a phenomenal thing to do.

'Pain may wish to destroy my spirit but I have a greater strength from within and that is courage and hope'