Merike Lugus (caregiver)
This is simply an example of the sort of forms (in this case for a care-giver) used for displaying shared information in the discontinued experiment in voluntary information sharing Thus the “explanation” displayed immediately below was based on this experiment.
Explanation: all the information listed below is voluntary. There may be some information a member would prefer to keep confidential. Sometimes a member may choose to disclose the information but exclude contact information and use a “pseudonym” in the interests of confidentiality.
|info title||info supplied by member|
|1. personal info|
|1a. name or “pseudonym”||Merike Lugus|
|1b. caregiver for –>||Rod Anderson|
|1c. information below last updated||Nov 3, 2007|
|1e. address||1940 Hill 60 Rd., R.R.5, Cobourg, ON, K9A 4J8|
|1f. phone||(905) 372-2410|
|1g. email firstname.lastname@example.org|
|2. info from a caregiver’s perspective|
|2a. comments about caregiving for WM||The initial diagnosis was a bit of a shock but we became used to it and the “watch & wait” period was life as usual — although I initially had some continuing anxiety. Then when Rod was enrolled in the PS-341 (Velcade) clinical trial at the Princess Margaret Hospital in Toronto the anxiety went away and I felt much more positive. Early on there were some logistics to be worked out (4 days to Toronto every 3 weeks when we live in Cobourg 100 km away). And at the start this was further complicated because of the SARS controls (but that’s long over). The easiest solution turned out to be that Rod went into Toronto on an early train and returned on a mid-afternoon train (though occasionally he drove himself both ways by car). Fortunately he had no immediate nausea or diarrhea side effects (common with multiple myeloma patients on this drug but not with WMers) — and at the beginning (but no longer) a slight occasional fatigue. Post-Velcade, the year 2005 was easy sailing. But then the second treatment (CVP-R) started. Fortunately, I was at Rod’s side during the first chemo day back in Sep/05 (which lasted 9-1/2 hours). A little disconcerting to see all the reactions after the benign Velcade treatments — but it was important to be there because he could probably not have driven back to Cobourg himself and we’d missed the 6 pm train). We then got used to this routine for the following 6 months. Since Apr/06 there have been no further chemo and no further symptoms — so this is a much more relaxing time.|
|2b. any other comments you wish to give about yourself||I am a visual artist (painter, then sculptor as well); also a writer (one published book of poetry and have recently finished my first novel). My website (with a lot of art and short stories newly posted) can be seen at http://www.rodmer.com/. Finally, during the summer, I’m also a very involved gardener.|