Busy times with Dora

It was a crazy weekend, starting on Friday!

On Friday morning Dave and I went to the Trinity College Blackham Environmental Centre which is a block of native scrub up near my mum and dad's place. We went on a bus with some other Trinity folk and trundled up to have a look at the new facilities. There was tea and coffee and delicious morning tea treat, made by Trinity catering students of course! It was a good morning and nice to be there to see another part of Trinity. It's almost sad how much we still enjoy being part of the Trinity community.

After that we dashed home, picked up some spag bol we had made, dropped it off at the community house in Gawler for the community lunch, went to pick up the girls, went home for a couple of hours so that Elsie could have a rest and we could do a few things to prepare for her party, left home again to take the girls to grandma's before going to the RAH for my 4pm appointment. After my appointment we had to hang around for me to get a blood test, then back to grandma's to let her know the results and home again around 7.30pm. We did a few more jobs in preparation for Sunday and then went to bed.

On Saturday Dave and I went to the Hilton in Adelaide to the Leukaemia Foundation's Patient Education Day. There was a talk about clinical trials from a professor, a guy who had non-Hodgkin's lymphoma and his wife spoke of their experience and we also went to a session on diet and exercise during and after cancer. They were all interesting and worthwhile going to. In addition to that though, there was morning tea, lunch and afternoon tea which were all extremely delicious.

Dave and I each got a free pen with two exciting features - a squidgy grip section that can be moulded to the individual and a blue light that glows in the grip section every second time the pen is clicked on. Only thing better than a free pen is a free pen with features.

As with any conference/education session there were the regular characters:

• the sleeper - one lady was so asleep her head would gradually get lower and lower and then she would sit up again (still eyes closed) and then it would go down again. It was slightly amusing, particularly when another lady next to her asked a question of the speaker and the sleeper was not roused at all.

• people who ask weird personal questions - one guy started his question with 'my mum has altzeimers...'


• people who are too helpful - there were people in the audience who liked to throw in their two bobs worth in answer to a question directed at the speaker. 'When my iron was low.... blah blah'. Thanks, but no one asked you.
  

Once again I was reminded that the world consists of a wide variety of individuals and I marvelled at the diversity among us. The biggest miracle of all is that God loves and knows everyone - even the wackos.

I found the professor particularly interesting when he spoke about some of the advances that have been made in the treatment of some cancers. They've made a drug that is able to target only cancerous cells for a specific cancer. I'm pretty vague on the details I know, sorry, but it was a combo of the biochemistry and pharmacology I did at uni. So then I started to think about the possibility of doing research. Having a crack at a PhD and researching drugs. I'm not really sure it's for me though, it all takes too long. Years and years of work to find out one tiny thing. It's interesting once someone can give you the summary but I don't know that I'm made to chip away at something forever.

We had a good chat with a couple over lunch. The guy had myeloma and is preparing to have a stem cell transplant in the near future. It was great to share some jokes and tell stories with people who had experienced very similar things. Since we live in Adelaide, it was also not very surprising to find that they are good friends with a family that we know.

After the sessions we raced through the central markets to pick up a few things for Sunday then went to Grandma's to collect our children. Home briefly to bake a cake and tidy up a bit more. My parents came to our place and then we went out to a dinner party in Gawler. It was more delicious food and good company with some laughs thrown in. We did make it home and into bed before midnight.

Sunday started with church in the morning. We didn't dilly-dally after the service and instead came home to get ready for Elsie's second birthday party. I decorated the cake as a Dora the Explorer map with a forest, bridge and rocky mountains. It came out quite well.


We had around 20 adults and about a dozen children including three infants. It was a bit crazy. There were frankfurts, sausage rolls, cheezels, fairy bread, cupcakes, honey crackles - all good party foods. Maesie had a gazillion cheezels as she shoved them on all of her fingers over and over. After the party she came down fairly hard from a sugar/orange colour high.

After the party, Gawler West hosted the MacGillivray village. It was the best option at the time but I'm not sure I'll be rushing to host again. I might put a bid in for the 2012 village.

I flopped into a chair about 8pm on Sunday and struggled to get out of it to go to bed.

Inconclusive

The results of my latest PET scan are inconclusive. Some small spots of activity are still hanging around but they could be due to my own good cells still cleaning up. We just have to keep hanging around and then have another scan in three months to see what's going on.

The doctor was surprised to see that I have put on quite a few kilos since I started treatment as he said most of his patients lose weight and don't have much of an appetite. I had a blood test to check for thyroid function so it will be interesting to see what that says. Maybe there will be more of an explanation to this than just too many sweets and custard.

That's about all at the moment. We're in a bit of a tizz about it I guess. Not too sure what this means for the next few months and for next year. I'm just going to keep plodding on and see how it goes.

Pre-PET #2

I am typing the fastest blog so far. It's late and I have biscuits in the oven and once they're done and out, I am going to bed.

My fingers are pretty much normal now - not tingly or weird any more so that is quite nice.

I was really tired most of last week, possibly because I used up all my energy driving to and cooking in Burra a couple of Saturdays ago. My knees and elbows have been a bit achy though and when I get up from sitting down for a while, it takes a few steps to get going. I feel like an old lady. More nana evidence. Is now the time to mention I am also trying to find a pattern so that I can crochet a tea-cosy?

My hair is growing back in all locations which is an encouraging sign.

I have my scan tomorrow. I am hoping that because it has been delayed the result might be a bit more definitive. If there's active disease then it really will be active. Clean up has a better chance of being finished so hopefully there isn't a false positive. And if there is no active disease then there really is no active disease. I am going to see the doctor about the results on Friday so that will be an interesting appointment.

I have been at work yesterday and today. Shorter days, admittedly, but work nonetheless. It has been nice to be back. Good to see the people. Good to be working. Good to be getting some cash.

I am not looking forward to fasting for the scan tomorrow, nor am I looking forward to lying on the bed of the machine for about half an hour trying not to move. Grrr.

Biscuits done. Off to bed.

Fatigue, kitchen chaos and American football

I am getting frustrated with the current state of things. I can function fairly well for most of the day but around about 7 or 8 pm, I run out of steam and just can't function any more. It is a real effort to haul myself off the couch and do anything. It is tricky because I would like to keep powering on but I just can't.

It is highly likely that I am pushing myself too much and trying to do too much but I'm not keen on taking it easy. The latest example of me over-doing things occurred on Saturday. I drove to Burra early in the morning to help a friend cook for a camp. I hadn't cooked with her before but had seen her in action a few times and tasted her delectable foodstuffs. I had a great day catching up with a few friends who were on the camp, having laughs and cooking with my friend in the kitchen and driving by myself with loud music and no kids for about 3 hours. It was an ace day but I think I am still recovering, even though that was three days ago!

Apart from that I don't know that I've been up to much. Dave's sister had her baby last Friday - a boy they called Patrick Andrew. They are all okay. Her elder son is at our place tonight and is trying to get an essay done. He is in year 8 and it is a bit of a team effort. It is about two movies so we watched one of them this afternoon. Maesie enjoyed it even though it was about American football. That girl loves movies - Dave is so proud. We are looking forward to family movie times in the future once she moves past Barbie 'Island Princess'.

Tomorrow I'm heading in to work to get organised for the following week when I'm starting back for a couple of days a week. I am looking forward to it but am also a bit unsure about whether I'll remember all the bits and pieces I need to and whether I'll be able to last all day.

Two more weeks

I received another call from the PET people. For whatever reason, my scan has been postponed even further. It is now scheduled for Wednesday 23rd June. That's two weeks from today. It's annoying for two reasons: 1. I want the information it will provide and 2. I have to shuffle appointments and other arrangements. For example, I had booked the car to be serviced this Friday, which I then canceled when I found out the scan would be that day. Now I won't have the scan but I won't be getting the car serviced either. Small issues really, but just frustrating.

I've been getting better at the gym so my fitness is improving however my weight doesn't seem to change. Stupid drugs. I do get a tickle in my throat now though when I exert myself aerobically and it makes me cough. I haven't mentioned this to the doctor yet so I will ask next time I go. In the meantime, I will see if ventolin makes any difference.

I haven't been doing many updates because I don't really feel like there's much to say. Things are fairly normalish again for a while. I still struggle to have the girls for a day by myself - they just suck all the energy I ever had. Perhaps this will just be the way it is for the next little while. They require so much in so many different ways and I usually feel that I am on the back foot all the time. This may well be a feeling I should get used to as a parent however I feel that perhaps there is a better way but I just haven't found it yet. I need to read more about it, send them to child care more or just grit my teeth till school when they'll be elsewhere for a large portion of the day.

Dave is going okay. He wants to get the scan done and find out the results too. He's a bit cranky about them stuffing the appointment around. He's done an essay and an exam that were hanging around from his unfinished study last year so it's good to have those out of the way and finished off. He's still not sure about next year which is a bit of a frustration but it will be sorted out eventually.

Elsie is quite clingy when I am around and just wants to be 'up', which I can't do for long because my tired, pathetic arms get sore. She can say quite a few words but isn't too keen on it. She doesn't really string them together yet. She often says a word once in passing and then won't say it again if you ask her to. She is a little cheeky pants and she will be two at the end of this month.

Maesie is four and is testing the boundaries quite a bit. Unfortunately, they aren't always rock solid because I lack the energy required to maintain a fortress. She's quite a good girl really but there's just a number of small things we try to keep on top of in an attempt to assist her in becoming a well-mannered, well-adjusted individual - and that just tuckers me out. She enjoys preschool and is looking forward to going to 'big school' after Christmas. She often thanks God during mealtime prayers for my hair that is growing back or that I don't have to have medicine anymore, as well as for the delicious food she then refuses to eat because she doesn't like it. Weirdo. Kids, who'd have them?

PET's in pieces

I was supposed to be having a PET scan tomorrow to find out whether any active disease remains. However, I received a phone call today from the RAH to say that the machine was in pieces because it hadn't been working and that it wouldn't be in action tomorrow.

My scan will now be on Friday at around 9 am. I am not sure yet when I will see the doctor for the results because that was supposed to be Friday at 1.15 but there is no guarantee that the PET results will be available by then. As much as I like Dr Giri, I don't really want to hang around just for a chat if he's not going to have my results so I may be shifting my appointment with him to later in the day on Friday or to another day next week. It's all a bit annoying. I was gearing up for my stinky test tomorrow and now I have to simmer down and then prepare for Friday instead.

That's about it for now. I'm feeling fairly good but still tired. That could be because I am a parent of two small children and/or because I go to bed too late and have nothing to do with the last few months. It's hard to tell. I am not as totally useless tired as I was though, so that is pretty good.

Life is returning to normal bit by bit as I've got meetings and I am getting back to things. Next week I will go into work on Wednesday to settle back in and then the following weeks I'll be working Mondays and Tuesdays. I am looking forward to getting back to the work and the people.

A summary of happenings

I haven't posted anything for a while so apologies to anyone checking for updates.

Time keeps ticking past and I can't keep up. We had my sister's eldest child here for a couple of nights last week so that she had one less to deal with. It all went quite well and Maesie was upset on Sunday because she missed her cousin.

I had a blood test last Friday and that showed that things are returning to normal. My haemoglobin is on the way up - 96 (it's good to be over 100 but over 115 is normal). How exciting.

I did Dave's Body Combat class on Saturday. It was the first time in about 6 months that I'd done Combat. I kept up with the class fairly well but on Sunday I was quite sore as muscles that have not done much for a while had been called into action.

This week I did RPM on Tuesday and then spent some time on the treadmill yesterday. I have been working pretty hard at regaining fitness and trying to lose some weight. It's not really working. I have pretty much increased my activity about four-fold and have been consuming less food however, I have gained a kilogram. I know a kilo isn't that much but to gain it when I should be losing is odd. I looked up some forums on the internet (the source of all reliable knowledge) and found some information that was both encouraging and disheartening. Many people who take prednisone (the steroid I was on) gain weight and find it difficult to get rid of the excess weight once they finish taking the drug. Good to know I am not alone. Crap to know that it's going to be hard work. I know I shouldn't worry about it, I know I should give myself a chance, I know I should just be happy to be healthy and feeling better etc etc. But it still sucks.

We spent some time at the MacGillivray village on Tuesday for Dave's sister's birthday. It was crazy, but could have been worse. She's due to have a baby any day, which will ramp up the chaos. I can't wait. (Please note: the previous statement is sarcastic. The opposite is in fact the truth - what I can't wait for is a decrease in the chaotic nature of the village. I feel that perhaps the Lord may return before this occurs). There will be another opportunity to enjoy the village this Saturday for the birthday of my tallest brother-in-law. There will be curry so it can be chaotic and just so long as I can eat rice and curry and pappadums and condiments, it will be okay.

I had ladies lunch yesterday which I enjoyed a great deal. Such a lovely monthly occurrence.

Elsie is cutting her incisors and so has been waking during the night and screaming about it. It's been quite frustrating and we are all a bit tired because of it. Hopefully the teeth will come through soon and she, and therefore we, will sleep through the night again.

I did have a dream last night that I had a test to see whether there was active disease in me. It wasn't a PET scan - some lady injected something into me. It was in a strange room, not really a hospital or anything. The result was good though. I think I had the test twice and the result was good both times. But then there were strange people I didn't know and we got on a boat or something. Weirdo dreams. Hopefully it is prophetic rather than just a hope.