The new world of cyber support.

Yesterday went well. I didn’t feel too sick and had a nice time with my visitors. Just after everyone left and Patrick and Emma were about to leave, Patrick went off to the toilet and Emma who had been sitting on my bed, decided to do a runner down the hall way. By the time I had unplugged my drip from the power point and gathered all the cables, she had made a bit of distance. She was having a lot of fun and I guess it was funny. I was hoping her good cheer would last the night out but an hour later, Patrick phoned and Emma was a bit hysterical. She was crying out for me and it was very distressing to hear her crying out like that on the other end of the phone. I jumped on to iChat to start a video chat and as soon as she could see me her breathing started to calm down a little. But the crying continued. I started to sing to her with actions - the old ladies looked up in bewilderment probably wondering why I was twinkling my fingers into the monitor while singing. But Emma’s face started to beam. She put on a big smile. It was just amazing. I told her it was late and that she needed to go to bed and that she should drink milk from the cup. She lifted up the cup as if to make a toast and said ‘milk’. Then she blew me a kiss.

I am just so lucky being able to go through all this and having all this technology available to me. Firstly I have the blog where I can express myself and share my stories with others. I love having the feedback. It is especially rewarding when I hear from people I have never met, who have come across my blog and taken something from it. Sometimes they email me or comment on the blog. There are stats that blog owners have access too. I can see how many visits I have in a day and even where they came from - which country or how they linked to the blog. For example, from google or from the link I put up in a Facebook status message. If they google, it tells me what keywords were used. Fascinating really but in the last week my visits have been quite huge and growing each day. In the 3 years I have had this blog, I have had about 1400 visits but yesterday alone I had 94.

Another amazing thing has happened recently in cyberspace. Facebook support. A few years ago, a blog called My Meso posted about my story after i made it onto the front page of The Age newspaper. When I went to the My Meso blog to check it out, I saw they did another story about a UK woman, Debbie Brewer who was also battling mesothelioma. I contacted Debbie who also has a blog and we also became Facebook friends. Debbie introduced me to Cher Bright, a woman from Perth also battling with meso. Since then, Debbie has been instrumental in getting mesothelioma sufferers and their families hooked up as Facebook friends - the Mesowarriors. Now we make a habit of suggesting each other as friends as more people hook up. What has happened is that an amazing cyber support network has evolved where we are becoming close and looking out for each other without most of us having ever met.

I hear all the time from people in the real world, that they are against joining up on Facebook. True, it has had a lot of bad press but for many of us who have come to treasure its benefits, it has been priceless. It’s the new world of cyber support.

Doing Chemo

I'm doing chemo right now and was hoping to write all about it and my thoughts but unfortunately I have the needle from the drip in such an awkward place on my wrist that the slightest movement makes the machine that goes beep, beep like mad, driving me and the elderly ladies that I'm sharing a room with, nuts. To avoid this I have to do one finger typing with one hand. I usually let my thoughts flow freely when I type my posts and this one finger typing is making the flow trickle.

I'm here for another night so I'll try my hand finger at it later. Giving this one the finger.

Biopsy Results

I got my biopsy results back today and have been meaning to blog about it but I’ve been out all day and evening so I’ll just mention the results and post more on my thoughts about it later. I have several tumours they are all small and all contained in right chest area. I start chemo on Wednesday. I’m going to stay in hospital for a couple of days because I am also trying to wean Emma off from breastfeeding. I almost had her weaned last week but she came down with a virus over the weekend and wasn’t eating or drinking and all she wanted was breast milk. Now she seems to get quite traumatised when I refuse her my breast so I thought it might be best to stay in hospital longer in the hope that she’ll deal with that better. I don’t know if that will work but we’ll see.
I guess I was expecting the test results to positively show as it did that my meso had returned. I’m relieved in a sense that now I can get on with the fight to kill the bastard.

Thank goodness it’s Spring

I had my biopsy yesterday. I hate all the unpleasant things you have to go through just to find out unpleasant news. They used a CT scan for positioning and a local anesthetic. After the doctor injected the anesthetic, I asked him how long it would take to numb the area. He said it has already numbed the skin but you can’t numb everything inside. So that scared me a little. All in all it wasn’t that bad. It was worse when the anesthetic wore off so it must have numbed the inside more than he said.

I asked him if I could look at the monitor to see where they are taking a sample from. He showed my a round ball shaped thing which I won’t call the tumour until the results come back. He said it was 2cm which was comforting. With the amount of pain I have I thought I would see tumours everywhere. I didn’t ask him if there were more tumours. I’ll leave that until Monday when I see the doctor who will be replacing my oncologist while he is on one months leave.

It is an unfortunate time for him to take leave because I felt comfortable ringing him up anytime I needed a question answered. This replacement, well as yet, I don’t even know his name.

I am quite please thought that if this all had to happen, it’s happening now in spring. Nothing like sunshine to put you in a good mood. I love the sun and I truly feel happy on days when the weather is perfect. The temperature is just right and you can feel the warmth of the sun on your skin. It really helps you to keep a positive attitude. On these days I just feel so lucky.

Things are looking good.

It is now a couple of days since my PET scan results and I'm trying to gather my thoughts, be positive and start the fight to destroy this bastard cancer. True it isn't a definite until I have the biopsy results but I am not feeling very positive on that front. I have constant pain which is a continuous reminder of the cancer. Before the scan results for ages now I was convincing myself that the pain was just scar tissue. I have had quite strong pain ever since my surgery three years ago so it was easy to pass it off as such. But in the last couple of months it became more severe. I started back at the gym a couple months ago so it was easy to assume I had just torn the scar tissue. Strangely, the pain seemed so much more bearable when I thought it was scar tissue. I was happy to learn to live with it, knowing that it wasn't trying to kill me.

The other constant reminder is Emma. I can't look at her an not think about me not being there for her. I have to win this. It will be very traumatic for her. Also the thought of her seeing me in the late stages of the disease, her last memories of me, is a horrible thought but I can't help but think about it. I think just in case of worst case scenario, I should start doing some video journals for her.

Now, having said all that, things are looking good. Why? It turns out that the tumour was also on my previous two x-rays but was overlooked. The most recent one was two weeks ago and the one three months prior. While I could be pissed off that it was missed, there is a positive side - the tumour couldn't be growing that fast. Also there are new clinical trials for Mesothelioma starting up all the time and sooner or later a cure will be found. All I have to do is to hang in there. Simple really.

For anyone in this predicament it is important to keep things in perspective and stay focussed on the positive. Medical science is moving exponentially toward cures for all cancers. The future really is looking bright we just have to stay focussed, do our best to keep our immune systems strong and try to remain positive. As I've said before, while there is life there is hope.

I'm going to start blogging again....

I haven't blogged since a few posts in January.  The first one on the 1st. of January was about me starting to blog again as part of my New Year's Resolution.   Well that all worked out well.  It's getting to be like 'The Boy Who Cried Wolf' with me.   In any case, I'm about to make a similar declaration.  I got results of a PET scan back today and it looks like the meso is back.  I'm doing a biopsy on Wednesday to confirm it so there is always a chance that all is well, but there is a good chance that it's not.

When I was going through my chemo, this blog was very helpful to me and I think it will be again so it looks like once more I'm going to boldly state ......I'm going to start blogging again.


Emma is now 22 months old.  She is doing brilliantly.  She brings so much joy into our lives.  I should put up some recent photos of her - must download them from my camera.  Here she is a few months ago