Tuesday 18 December Ramble
December 18, 2012 — Headless“In the end, it’s not going to matter how many breaths you took, but how many moments took your breath away” – Shing Xiong
Yep – no sleep really to report so we won’t go there. Was up sorting out a work issue that I had forgotten about anyway until late but that’s OK. Can’t sleep anyway. Jacob had a revelation last night that Dad can’t sleep and doesn’t have a normal sleep pattern, as he was that hot last night that he wanted to stay up with me until I went to bed. Poor bugger nearly was in tears when he realised that I was going to be up for about another 4-5 hours yet. Put him back to bed and he managed to settle down well. Up at 5:30am, have brekkie, cuppa tea, meds and read the paper. Decide that I shoudl go back to bed to try to rest some more. So head upstairs again and manage to doze off for about half an hour, only to wake in tears. Now that is something I haven’t really had for a while, but feeling like roadkill today and well flatteened and runover! Emotionally there is a lot at the top of the pot today and it will end up boiling over. Get up and get on with the day. Feeling sad too!
Boys get up and I make the call that we are heading into the office today as I need to be on the system to make some changes more easily. Show Lachie the fun walking route along the edge of the Red Zone, and he is loving it, esp. when we walk past the tank – yep there is an army tank on the corner of Colombo and Gloucester Streets. It is part of a fund raising activity for the Salvation Army Xmas lunch fund (I think ). Get in the office. Nice to see lots of smiling faces and happy folk. Have a great day workwise. Health wise I am fighting fatigue, and flutuating energy levels. It makes it very hard to deal with really. Hate days like this. Sue rescues us about 1:15 as I have an appointment with Nurse Maude.
The 2 Nurse Maude nurses arrive and it turns out that it is not the Physio to sort out the walker, it is the District Nurse and the Pallative Care Nurse. Spend sometime going over the current status of myself and my meds. End up with a doctor appointment for first thing in the morning, another new med to test out which should, all going to plan ensure that I am more settled and really cross all limbs here it can help me sleep and establish a normal non-anxious pattern of rest. Watch this space! Struggling with the head switching modes so much still. It turns out that the drifting off type seizures hat I am having are just that, seizures and have a name – absences (or absence seizures).
The nurses head off and I start to get dinner ready while Sue takes the car in for a service. She returns home just before the boys (they’ve been to Pioneer Pool). We have dinner and then head off to Riccarton to finish the Xmas shopping – yes all done even with the crowds!!! Get home, boys to bed, and blog time. Might even wrap the last of the pressies to completely get Xmas 2012 ready to be done. June calls and chats with Sue while I get the blog done. Really, really, struggling now, so will sign off soon and head haha – to bed. M&D time and over with. Hope all have had a fantastic day with loads of fun. Take care all.
Kia Kaha.
December 19, 2012 at 4:15 am
Hi Tony, I’ve been so busy that I haven’t caught up with your blog for some months now. As I was also in Mexico for 3 months that’s my excuse and I’m sticking to it! So sorry to read that things haven’t been going that well for you lately. However, it seems that you continue to display amazing courage and resilience and I’m humbled. On my front the docs have just told me that I now also have cancer in my liver and adrenal glands. With the neuro-endocrine, bladder and bone cancer already I’m starting to feel like a bloody cancer convention LOL! They wanted to give me another round of chemo but I refused as they said they had little hope it would do anything and it was almost certain I’d be dead within 6 months. Bugger that for an option I’ll accept! I decided to follow another path and have started a naturopathic treatment plan which seems a better option to me. However, I’m not rejecting western medicine as I think it has a lot going for even it is useless at curing cancer! I’ve had a bone scan done and will talk to the doc next week about the option of very narrow-band radiotherapy to reduce the bone pain a bit. Still not convinced that this is the best option again either but will keep an open mind! It is obvious though that I am not yet in anywhere near the pain and discomfort that you are experiencing and my heart goes out to you (and to your family). Keep fighting the good fight my friend, in whatever way you feel is best for you. I’m am positive that your example has been, and continues to be an inspiration for many people. And as you mentioned a couple of days ago – your cancer doesn’t define you – you define your your cancer!!! Have a fun, joyful and loving Christmas, David