Life is good

Well it's now half way between my last chemo session and the next one coming up and I am well overdue for a post. I'm feeling pretty good today. It took me just over a week to feel back to normal and even during that week while I wasn't feeling well enough to be out and about, I didn't feel like I'd been hit by a truck like the previous time. It was fairly mild in comparison.  It helped too having great food and service.  I hope I don't get a friend into trouble but it helps to know someone who manages the catering where you are staying.  Here is a photo of dinner in hospital.  One dozen oysters,  roast chicken done very nicely,  cheese cake with a brandy orange infusion, and a small bottle of red wine.  I love oysters and was kindly given 12 instead of the allotted 6.

I am feeling very positive at the moment, made more so because a fellow member of the ADSVIC support group, Farid, who is undergoing a clinical trial called FAK, has had some very promising results with tumour reduction. The FAK trial hadn't been tried yet on mesothelioma but Farid's wife Lisa found out about the trial and saw that it had been successful with aggressive melanoma and asked if they would be prepared to try it out for mesothelioma. So kudos to Lisa and Farid for being so resourceful. It is amazing how much research and detective work is being done by people who are effected by cancer. In the case of mesothelioma, because there is no known cure, most of us are clutching at straws hoping to come across something in the time we have. You feel like a time bomb is ticking and you are a guinea pig in whatever you try but you go on with it in the hope that you are going to be lucky with timing. As I always say, while there is life there is hope.

Here is Emma and I a few days ago in the garden enjoying the perfect weather.

Another reason I am feeling so good is that in the last 2 nights Patrick and I have gone out and had a great time.  Friday night was my brother Jack's 50th birthday and I organised that a friend's daughter baby sit Emma.  It was the first time ever I had left her with a babysitter so I was a bit worried that she would wake up and find us not there, but thankfully she slept right through.

Last night was a work end of year party for Patrick's company and so we left Emma with my parents.   She was very upset for the first hour or so, looking for us everywhere but then she settled and was quite happy.  The plan was to leave her there overnight but in the end we had to come and rescue my parents or no-one was going to get any sleep.  Emma wouldn't let my parents put her down in the porta-cot so they took her to bed with them.  At home we have been letting Emma turn off her bedroom light just before she goes to bed by lifting her up.  She just loves doing it.  In my parents bed they had light switches on their bedside tables - all accessible to Emma.   That was great news for her.  She was having a ball turning the light off and on...off and on.   With every flick of the switch,  Emma was becoming more and more energised.   When we got there at 2:00am my parents were looking exhausted and Emma was wide awake, giggling and flicking the switch.

In general I am feeling good, positive and thinking that life is good.

Update:  I forgot to mention that in hospital I also managed to get a private room this time around as opposed to sharing with 3 others last time.

Update2: In an effort to not get my friend John into trouble for the preferential treatment, I forgot to mention the hospital was Cabrini.  Sorry John Wayne (as if that is your real name).

Just do it

About a week after my chemo the pain and nausea did indeed come to pass. I did mention that on my Facebook wall but probably should have posted about it since not everyone is a Facebook friend.  My Macbook broke almost 2 weeks ago and writing on the iPad is more cumbersome.  I have ordered a MacBook Air online but doesn't look like I'll have it on time for my next chemo session tomorrow.  A real shame because I won't be able to do video chat with Emma.

 So just over a week after my last chemo session, I started feeling normal again.  It is hard sometimes when you are feeling so crappy to remember what it is like to feel normal.  Tomorrow I'm going in for another chemo session and the thought of feeling so bad again makes me a bit nervous.  My main fear though is having it mess up my organs so much that I have to stop with this particular chemo combination.  The chemo drugs I use, Alimta and Cisplatin are believed by most specialists of mesothelioma in Australia to be the most effective at keeping meso at bay.  Well as I always say, there is no point in worrying about something before it happens.  Of course it's impossible not to think about it but I need to do this chemo for a chance to beat this cancer so the only motto that makes sense right now is ...'just do it.'    

Just a stage that will pass

Coming home wasn't quite like I expected. The house was a mess, I was feeling awful and Emma thought she was finally going to be breast fed. I started to wonder whether or not I should have stayed in hospital. At least there I was being looked after nicely and knew the people looking after me were just doing their job. Back at home I really wanted to do stuff but couldn't, I needed Patrick to look after me and Emma wanted me to go back to how things were. I felt quite useless. Over the video chat, I seemed to be able to calm Emma down. She could accept that I wasn't there. But being at home, she knew I was there but just not giving her what she wanted. I had to listen to her crying for hours on end while Patrick tried to settle her.

People often tell me that my blog is positive and optimistic. It's possible that I tend to write more when I am feeling good but I do try to view everything in a positive light. When things are difficult, it doesn't always come naturally and I find myself at times like this thinking how can I possibly feel good about all this.

When Emma was born, a good friend of mine, Yossi, told me that whenever things get difficult with newborns, to remember each time that everything is just a stage and it passes. It makes it easier to cope with difficult times when you know it is just something that will pass.

With this in mind, I needed to remind myself that all this nausea and pain I feel are not the cancer but the chemo. Before the chemo, I managed my pain fairly well. It never made me sick, just made me aware that there was something there if I had not taken my pain meds on time. By doing chemo, know you are going to make yourself really sick with the hope that it will make you better. It is all fairly obvious stuff I guess but sometimes when you're not feeling the best, you need to consciously remind yourself that it is just a stage. It will pass.

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

The Story of How 'The Baby' Got a Name

I've been back at work part-time since December just 2 days a week but as of next week it will be 3 days a week.  This week went really fast because one of my 2 work days was a public holiday - Australia Day.  It's now the weekend already.

Last weekend we went away for for a couple of days to a farmstay up near Bendigo.  I thought it would be nice for Emma to be on a farm and see the animals.  The owners were really nice and showed us their farm all for Emma's benefit.  The best thing we did was to go out in the paddock in our 4wd's and round up the sheep - all for Emma's benefit.  It was also the first time Emma had been in the front of the car and  got really excited about the buttons on the dashboard and no amount of us going 'look look' pointing at the sheep, could stop her from starring at the buttons.

I mentioned on my first post for the year that it took six months to decide on a name for our baby.  Patrick and I had very different ideas about names and really struggled to find one we both could agree on.  When she turned exactly six months old we had to have a name or we would miss out on the baby bonus. We were up until 3:00 am thrashing it through until we picked Emma Sarina Frances.  Emma being the only name we both had in common on our short lists.   Sarina was my maternal Granmother's name and Frances came from both sides of Patrick's family.  Unforturnately in the rush to get the registration in, we forgot to put Emma on the form and I only found out in the process of getting a passport for her.  So it took another 2 months to get that all sorted out.

Funnily enough we did get her medicare card and a bank account in the name of Emma before the mistake was discovered and almost also got the passport done but had it rejected not because of the name error but because the referee's details on the passport form was in blue ink instead of black.  Had that not been the case, it is likely the passport would have been accepted with the worng name on it as the interviewer at the post office didn't seem to notice either.  A scenario most criminals could only dream of.

Anyway it was a great relief to be able to call her by a name.  Within my family I was calling her Eliana which was the name I originally liked best (Hebrew name meaning G-d has answered me) but between Patrick and myself we referred to her as 'the baby'.  'Hey did you see what the baby did today'   Yes it was a huge relief to finally call her Emma and now I can't imagine her being called anything else.

Choochie Passed Away.

 Another thing that happened while I was away from blogging was that my beautiful dog Choochie passed away.   I used to have a slide show on the right side bar with photos of Choochie and Patrick - my two boys.  I just replaced it now with photos of the three of us.

After Emma was born Keith - an ex who also was a big part in Choochie's life, looked after him because I found it was too much with getting up to feed Emma umpteen times during the night and giving Choochie his insulin shots every 8 hours.  Choochie became a diabetic as a consequence of pancreatitis and then as a consequence of that he became blind.  Chasing balls was his life.  He lived for it and when he slept it was clear from his movements that he dreamed about it.

When Emma was born, Choochie was almost completely blind - it happened fast toward the end.  So he was to old to know Emma and Emma too young to know him.  Just before we put him down he had a seizure and could no longer walk.   Keith and I were there at the vet to put him down and it was heartbreaking.  The next week Keith rang to see how I was doing but I couldn't talk long because Emma was sick and I had to attend to her.   She just started daycare and so started to pick up all the bugs that she could.  The following week Keith rang to ask how Emma was and I couldn't speak because I was at sleep school with Emma.  I said to Keith, 'I'm at the South Eastern Hospital and we are just about to put Emma down.  Keith screamed back 'what do you mean put her down'.

So here is to Choochie who brought me so much joy and had such a beautiful nature.  While I was sick he helped to put a smile on my face.   I miss him dearly.

New Years Resolution

OK it's the first day of the year - 2010. So one of my new year resolutions is to start blogging again. I'll just post this quick one to get the ball rolling. I won't even start here to say what has been happening in the last however long its been because I think that is what has bogged me down from starting blogging again - where to start.

So, we'll see how long I can keep up this resolution. If I broke it I'd have to break another resolution which is not to break my resolutions this time. So thank you to my readership who I'm sure have been logging on each day to see if I have blogged :-) Or maybe you have just subscribed to the rss feeds in the past.

One thing I regret about not blogging much over the past year is that Emma (yes we did find a name for her at the 6 month mark) reached so many milestones that I would have had documented. Oh well never too late to start doing that.