While fundraising has been the major focus of this blog and it certainly is pivotal to making this project a success, some of you ask how I make the day to day ends meet. A new obstacle this past few weeks brought to the fore of my mind the other most important ingredient to making this a successful project and about which I've not spoken.
My support network
This is made up of five women, all long term friends...and I mean LONG...you may remember that I was born and raised in Southern Ontario, went to public school here and attended the University of Western Ontario. I have a kernel of friends who have come with me through much of that time. Of the five women the one I have known the shortest time is a strong ten year friendship...the longest 50 years! (We shared our first two-wheeler). The others, 15, 32, and 45 year friendships. No faint of heart friends here. Tested and true. And then there is the honorary member of the support team, my Mom, Jeanne.
When a person applies to the transplant programme they are required to have a support person in place. I couldn't provide that and had to sell the notion of a team approach. It was iffy and the weak point in my application to join the programme. One person in the psych department rooted for this model, in fact had been advocating for something similar for everyone. The sceptics tested my team more than once. Asked for important appointments with little time to organize. Expected attendance at some pretty tough procedures. Called them out of the blue and questioned the degree of their commitment.
If my team had a category in the Olympics they would wear medals. As it is I'll be coining my own to anoint them by the time we are finished.
This is how the team works day to day. The calendar goes out on the internet and people commit to blocks of a week, sometimes two, over a two month period. They also list their absolutely impossible times. They have jobs and families and life commitments. It proves the rule: If you want something done, ask a busy person.
They negotiate on line if there are conflicts or holes in the schedule, trade and keep it all recorded so I am always secure about who's on first.
Their job in their week 'on' is to be at the end of a cell phone 24 hours a day waiting for the BIG call that lungs have arrived. They are prepared to clear their slate at a moments notice. They phone in daily, check to see if I am well, need groceries, suss out if I am eating and attending physio (I can hide out now and again). It's a fancy dance between being a caregiver and being my friend. But every one of them has managed an elegant meshing of each. Some time in the duty week, I see that support person for a social event, a picnic at my house, or dinner out, an afternoon tea or a trip to the book store, depending on my energy and theirs. I find it is safe to be vulnerable as long as I feel I am in community, have a net that they provide.
This past few weeks I encountered a bigger obstacle than one person can handle. I was taken off the transplant list after a CT scan detected a spot on my lungs. I plunged into darkness for a day or two. Knowledge is good but this knowledge knocked hope out from under me. I wasn't ready to step out on my own. Then I called my team.
They banged into action. One of them came with me for a meeting with the head of the team to discuss and decide on a strategy to proceed. It was during this part of the process that I realized afresh just how solid my team was. My choices were few. I could repeat a scan every three months hoping that the spot would disappear. During this time I would be suspended from the list. The alternative was to have a needle biopsy of the lung and examine the sample to determine if it was the big C word or something else we didn't need to worry about. If it was cancerous, I would be permanently removed from the transplant list and could pack up and come home. If it was not, I would immediately go back on the waiting list.
Each person in my team has special and specific gifts they offer me. They are particularly generous with these gifts. Among them there are comforters, both spiritual and body, organizers, researchers , cooks, morale boosters and entertainers. Left to the natural synergy of the group, all my needs seem to get taken care of using the best from each person.
I discussed the alternatives with each of them and the logisitics of each choice. Their answers, each a different area of concern, became the pieces of the puzzle that culminated in my decision to go ahead with the procedure. On Friday past, I and one of my crew went to TGH. The procedure had a 50/50 chance of making more problems than it solved.
With the aide of my team, this camel slipped through the eye of the needle. The biopsy was clear of anything ominous. I will be relisted later this week and the wait for my new lungs with resume.
With celebration, and much gratitude, to Barb, Jane, Kris, Martha, and Wendy
Thank you and love
Sandra
Here are some pictures of the volunteers and a happy purchaser!
