There are a trail of 'health professionals' on my trail, and some of them are starting to get right up my nose.
I have no trouble with the trial nurse who needs to check up on me fairly regularly, she's bright and breezy, asks sensible questions like how do I feel, what are my symptoms etc.
I can cope with the woman who feels I need to join a support group or two.... no thanks. But they are such fun people she says - still no thanks but I'll think about it. (I have come across a couple of people who belong to all the support groups and they are unable to talk about anyone other than themselves and anything other than their illness and whether they will be alive next year. I cannot stand the thought of being stuck in a room full of people like that - I don't know that they are all like that but not sure I want to take the risk)
The ones that ring me up and tell me that I need to grieve for my loss of health and should get counselling are getting close to being hung up on. They seem to prod at it until they know they have upset me and use this to confirm I need help. Yes I am still upset that I would be in the UK next week if this hadn't happened. Talking it over with someone is not going to make it better, in fact it is going to make it worse - it is best it simmers in the back of my mind until I find some acceptance (and we'll go next year). I am coping perfectly well with a lot of other aspects of life at the moment, and I am trying to get back to the adjusted type of normal - the best I can get it. They don't see this. I may have to get caller display so I can avoid them.
Okay rant over - I'll go and do something less irritating to me.
Thursday, June 30, 2005
Wednesday, June 29, 2005
About time for an update
I'm not actually depressed at the moment but aware often that what is happening in my life is depressing so I feel doubtful about blogging for fear of sounding miserable.
Anyway I had the first dose of chemotheraphy yesterday.
I was given three choices:
1 Not too nasty chemo with about a 60% chance it would work
2 Nastier chemo with a slightly better chance it would work
3 The option to go on a clinical trial where I would get nastier chemo or nastier chemo in conjunction with a new drug which looks good in mice but initial results in humans are only moderately successful.
No one quite believes I did this but I narrowed it down to options 1 or 3 and I tossed a coin. Option 3 came up. Then over the other side of the world they reviewed my scans and bloodtests, decided I was an acceptable guinea pig and tossed another coin to randomise me onto the trial and I came up as part of the control group so I am just getting the nastier chemo cocktail not the new drug. A couple of people have asked cautiously if I am disappointed about this but I am actually not... if that is what happened that is the way it is meant to be for me. A minor bit of good news is the tumour they can measure at the moment on scans (there are a lot of bits that aren't showing up in scans) has not grown since the last scan in early May, (and fingers crossed it starts getting smaller soon) .
I'm starting back at work next week, once I get over the three or four days of yuk that goes with chemo, but think I will work mostly from home for a while. Home is a good place to work, home is just a good place to be!
Anyway I had the first dose of chemotheraphy yesterday.
I was given three choices:
1 Not too nasty chemo with about a 60% chance it would work
2 Nastier chemo with a slightly better chance it would work
3 The option to go on a clinical trial where I would get nastier chemo or nastier chemo in conjunction with a new drug which looks good in mice but initial results in humans are only moderately successful.
No one quite believes I did this but I narrowed it down to options 1 or 3 and I tossed a coin. Option 3 came up. Then over the other side of the world they reviewed my scans and bloodtests, decided I was an acceptable guinea pig and tossed another coin to randomise me onto the trial and I came up as part of the control group so I am just getting the nastier chemo cocktail not the new drug. A couple of people have asked cautiously if I am disappointed about this but I am actually not... if that is what happened that is the way it is meant to be for me. A minor bit of good news is the tumour they can measure at the moment on scans (there are a lot of bits that aren't showing up in scans) has not grown since the last scan in early May, (and fingers crossed it starts getting smaller soon) .
I'm starting back at work next week, once I get over the three or four days of yuk that goes with chemo, but think I will work mostly from home for a while. Home is a good place to work, home is just a good place to be!
Saturday, June 18, 2005
Mingling with the farming community
Fieldays
We went yesterday. The weather more or less held together, there wasn't too much mud, there were a whole heap of people... We wandered round for hours and then had to do a circuit again to buy all the things we had noted on the way but didn't want to carry.
I am in love with miniature cattle. However the price tag is too scary to contemplate. These were the size of a large dog, looked like tiny highland cattle. Soooo cute!
Got waylaid at serveral saddlery places - can't resist a special... so stocked up on lead ropes, halters, hay nets, worming pastes, covers and ummmm a saddle - a tiny wee mini horse sized saddle that was soooo cheap (and I am having some small regrets that I didn't buy another one as well which was a third of it's normal price).
Also got some plants to thicken out the shelter belts some more. And some other stuff of a minor nature.
Looked at tractors of all sizes, quadbikes, farm buildings, stock underpasses, fencing, watertroughs, clothing, tools, watertanks, trailers, horsefloats, and machinery with obscure uses.
Exhausting but fun
Thursday, June 16, 2005
Tuesday, June 14, 2005
The nomad bus
The nomad bus. Husband built this...(well he did the conversion from bus to motorhome) however he can't claim any credit for the paint job which was done by a very talented man in Christchurch and is amazing. Bus owner tells us that the attention is a bit boring at times - people always ask if they can get a photo of it.
Monday, June 13, 2005
This 'n' that
No intentional neglect here, just stuff has kept happening lately. Coupled with the diminished mobility/ energy as I work on getting back to normal my brain has turned to mush and I haven't been able to think of a single thing (either intelligent or stupid) to say.
So here is a brief catchup.
For starters we've had some nomads in a bus parked in the back yard for a week. Lovely to see them but glad they have gone... not that they were any trouble, they even weeded some garden and did some housework, I'm just an antisocial cuss. I might post a photo of the nomad bus later - it's very impressive and a work of art in its own right.
Close friend's father died last week too in Christchurch. Not unexpected but sad nonetheless. This was a man who treated us as part of his family, loaned us his holiday home and boat, taught my children to fish, waterski and drive the boat, told us off for our dissolute habits and gave out sage advice. Husband has gone to the funeral today. I contemplated being there but am not sure I have the energy to see it through at the moment. It's also the second anniversary of my father's death this week so I'm a bit contemplative about life and death at the moment.
I am working on getting round more as I want to go to Fieldays on Friday. Not sure if I am up to that much walking yet or not but guess I can sit myself down at a stand if it gets tiring. I am okay wandering round for an hour or two at a time.
Chooks have finally gone off the lay for the winter and we have no eggs (darn it). One of the cows got under the hotwire in one paddock and trimmed the recently planted shelter belt in that paddock (double darn it) and the littlest horse trimmed his girlfriends tail very short so she is going to look a bit silly in the show ring this summer.
Life's like that I guess.
So here is a brief catchup.
For starters we've had some nomads in a bus parked in the back yard for a week. Lovely to see them but glad they have gone... not that they were any trouble, they even weeded some garden and did some housework, I'm just an antisocial cuss. I might post a photo of the nomad bus later - it's very impressive and a work of art in its own right.
Close friend's father died last week too in Christchurch. Not unexpected but sad nonetheless. This was a man who treated us as part of his family, loaned us his holiday home and boat, taught my children to fish, waterski and drive the boat, told us off for our dissolute habits and gave out sage advice. Husband has gone to the funeral today. I contemplated being there but am not sure I have the energy to see it through at the moment. It's also the second anniversary of my father's death this week so I'm a bit contemplative about life and death at the moment.
I am working on getting round more as I want to go to Fieldays on Friday. Not sure if I am up to that much walking yet or not but guess I can sit myself down at a stand if it gets tiring. I am okay wandering round for an hour or two at a time.
Chooks have finally gone off the lay for the winter and we have no eggs (darn it). One of the cows got under the hotwire in one paddock and trimmed the recently planted shelter belt in that paddock (double darn it) and the littlest horse trimmed his girlfriends tail very short so she is going to look a bit silly in the show ring this summer.
Life's like that I guess.
Friday, June 10, 2005
Insular
I like being by myself... I don't get scared alone in the dark (much anyway) I like solitary and bordering on antisocial pursuits - reading, writing, scrapbooking, gardening, solitary horse grooming sessions. I like riding alone, walking alone, I used to jog with only a dog for company. A package tour holiday with the same 30 people for 10 days would drive me demented. I choose to live where the neighbours can't see into my windows, I work best in an enclosed office rather than an open plan one.
Most of the time I am moderately happy to have some human interaction in my day, but if I go a day or two without seeing anyone it doesn't upset me. Happily I have a husband with a similar outlook so we can be antisocial together.
The 'people people' I know find this disconcerting, as if contentment with aloneness is some sign of psychological disturbance. It is good for me to go out apparently. It is equally good for people I know only vaguely to come and keep me company....
They mean well - they just don't understand that I am quite comfortable with solitude.
Most of the time I am moderately happy to have some human interaction in my day, but if I go a day or two without seeing anyone it doesn't upset me. Happily I have a husband with a similar outlook so we can be antisocial together.
The 'people people' I know find this disconcerting, as if contentment with aloneness is some sign of psychological disturbance. It is good for me to go out apparently. It is equally good for people I know only vaguely to come and keep me company....
They mean well - they just don't understand that I am quite comfortable with solitude.
Wednesday, June 01, 2005
Let me live up to my name - Wino that is...
Had someone else tell me today I should get counseling to help me deal with the stuff in my life that I have difficulty dealing with....
Hic.... bugger that. Two (big) glasses of wine, a chat on the phone to a friend that always makes me laugh and my problems aren't that important. Let me go and get another glass, and spend a little more time on that post I have been formulating for a while 'Why counseling can make you feel worse than you already did'
I'll get back to you with that.
Hic.... bugger that. Two (big) glasses of wine, a chat on the phone to a friend that always makes me laugh and my problems aren't that important. Let me go and get another glass, and spend a little more time on that post I have been formulating for a while 'Why counseling can make you feel worse than you already did'
I'll get back to you with that.
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