Wednesday, 25 January 2012

My Office Visit

On a three weekly by three weekly basis (the period between visits to the specialist) I seem to be slowly on the improve. However, down at the daily level things are much more challenging. No day runs smoothly and some days are definitely better than others. On some days I sleep well and have energy to stay up for a few hours and eg play cards with my kids, as happened yesterday. On other days the fevers kick back in and I need to spend the day recovering from the troubled night. That is the case today - last night was not very good but I did thankfully manage to sleep quite a bit this morning to help make up for the lost sleep last night.

Yesterday was my son's first day of school for 2012, but he was home just after midday. He then drove us to a bakery/cafe and we had a simple lunch. That was very nice.

On Sunday I went with my wife to my old office. I had not been there for six months. I collected a few personal photos and pictures and other belongings that I had there. I did not bump in to anyone there which is just as well as it was a little emotional returning (although, to be fair, not as bad as I had thought). Going through my things I felt a very strong pull and desire to once again be behind my desk working hard like I used to.

On Friday I am due to get a CT scan, although I don't expect to hear the results until I next see the specialist. I suspect I will have to take up a wheelchair to get me around to where I need to go. I am fairly sure I could walk the distances involved but since I am not exactly sure where I will be going it is probably best to play it safe. I have had the wheel chair for a little while (since thinking I would need another blood transfusion) but have not used it. Using one I guess is just another adjustment I need to make.

Saturday, 21 January 2012

Give A Little / Email list


For anyone who would like to donate by credit card to the trust fund ... The original "Give A Little" web page that I set up has closed off automatically (after 6 months). I've started a new page at which can facilitate donations by credit card. A donation this morning shows that page is definitely up and running just fine.

Also if you're not getting a monthly email from me with an update on how Andrew is doing (and would like to) - let me know and I can add you to the email list we have.

Best wishes,


Thursday, 19 January 2012

Officially Stable

The blood test results of my most recent blood test indicate that I am stable. This has been the case for a while now. My liver swelling has also come down a bit in the last three weeks. My energy levels have also improved and I have managed to take some of my longest walks in months. The difficulty with my neighbourhood is that, apart from the continued footpath upgrades, once you go too far from my house nothing is flat. So I need to pick a "hill" on my wait out for a walk or leave the "hill" to the end.
My nausea levels have unfortunately been increasing as has the pain in my back muscles from lying too long on them. I have been given some new anti-nausea medication and I can now lay a bit more on my side now that my liver has come down a bit, so it is all a bit of a balancing act.
I got caught in the rain on one of my longer walks (forecast was fine for the entire day and no real sign of rain when I started, but weather changes fast in Auckland - I was only out 15 minutes or so) and got cold before I got home. That night I had a bad fever, something I have not had for a number of months. Thankfully it appears like it was a one-off as I did not have a fever last night. However, i am still recovering from that rather sleepless night.

I have recently had a chat with one of the people administering the trust. I am overwhelmed by the amount that has been raised and I want all those that have donated and/or continue to donate to the Trust to know that my family and I are truly grateful to you all. Without the support of the Trust I am not exactly sure how we would be coping, so thank you all.

Wednesday, 11 January 2012

Life is on hold

This week the oncology nurse who visits me said that life has put me on hold, which I thought was a very apt description. My week was similar to previous weeks in that I don't seem to be getting any weaker, but I don't seem to be getting stronger, or if I am it is in very small amounts. I have put on some weight, which is good, so I am now back to about 70kg (although still described by the specialist as skeletal thin). I did venture further for a lunch yesterday, mainly because the place I was originally going to go to ended up being shut. I drove there and back, which was nice.
I have another blood test on Friday and see the specialist again on Wednesday, all part of my three-weekly routine. I have yet to hear from the hospital on when I will get a CT scan, but I don't expect it will happen quickly.
I went for a couple of short walks today which were not very taxing on me at all. These walks will be better all round when the pavement is all finished, but that is still a little while away. I managed to sit up for a while longer yesterday playing card games with my daughter and the day before I also managed some reasonable "up time". So I guess when I look back on all these things they are all small steps in the right direction.

Wednesday, 4 January 2012

A Weaker Week

For the past week I have felt quite a lot weaker (physically and emotionally) than in recent times. It has been difficult to do much although I still managed a few short walks and did drive a short distance to pick up some food. I am however spending a lot of my time horizontal, or close to it. On the good news side, my son returns late tonight after 28 days in India, and I am hoping this will provide me with the pick-me-up I need. He does leave the following week for a week-long training camp which will be hard for me, but at least he will be in the same country.

Sleeping has become more difficult as I struggle to find a comfortable position that will last me a few hours. My nights are thus now not so restful, which makes things difficult for the following day.

Today they have restarted roadworks to fix the footpath on an adjacent street to ours. This increases noise and will, for a time, remove part of my walking route.

On the plus side, my weight has stabilized and I may even have put on a small amount. I can, and do, still eat a lot and seem to be able to tolerate a wider variety of food than I used to.