Planning and Preparation
[The Hospital] [Meeting Others] [Retail Therapy] [Support from Others] [Information]
Planning and Preparation
I have had my first meeting with members of the caregiving team: Leanne the nurse manager, Rochelle the primary nurse and Ivan the social worker. We spent nearly two hours reviewing aspects of their approach and in the process allowing them to see the kind of person I am and how I might respond.
I will be their second patient for a bmt for myelofibrosis. The first is a young man (18 at time of bmt) who is doing well other than chronic GVHD in his eyes.
Leanne showed me around the ward (7E at the Alfred Hospital). On the positive side, being on the seventh floor there are good views over Faulkner Park on one side or out to sea. However the environment seemed particularly unappealing aesthetically to me and I resolved that I must bring the beauty in with me. Hence, my first request that has gone out to friends:
Please send me one or two photos or prints of particular beauty, postcard size up to A4 which can be laminated and stuck on the walls; plus one piece of your favourite inspirational music (CD or tape).
This way, not only do I have beauty within my room, but also the connection with my community of support is direct and specific.
The other major impact of the meeting was the realisation of my personal involvement in all this. Now this might sound strange, but when one is researching a process such as this it is all quite abstract. But it is not abstract when someone is saying, "your nurse will be . . . ", or "your room". There was a sudden clunk of recognition that it will actually be me going through this process which was rather confronting.
Overall it was a very helpful visit and I was glad to have done it well in advance to allow for further preparation, both practical and emotional.
I had made contact with the Royal Melbourne Hospital and asked about their record. They have done three BMTs with two survivors. I asked if they would forward a letter from me on to those two people, which they kindly did. By coincidence both phoned me within an hour of each other and told me their stories.
One was a man who had been exposed to benzene and had his bmt last May. He is not yet back at work, suffering chronic GVHD. The other is a woman who had her bmt four years ago after having mf for twelve years. We had a great chat and she knew of me from the publicity surrounding my case, and even uses that case in teaching adult job seekers interview skills. She did well for a while but about a year ago GVHD returned in the form of scleraderma in her trunk, which is very debilitating and restricts her physical capacity significantly. She invited me to visit and consequently, I spent most of the day last Sunday with her.
She was very forthright and disclosed a lot of detail about her treatment and her response to it, which was extremely helpful. I came away feeling that I had underestimated the physical challenges of the treatment process.
Support from Others
This week was the last week of the semester for my Buddhist study group and I was overwhelmed by their offers of support and practical help ranging from aromatherapy, massage, classic guitar music, an outstanding book about dealing with death, tapes to visits. I have committed to undertake a practice at the same time as the group every week.
My Carltonware club has offered to provide hats, which is very kind. Im not looking forward to losing my hair for several months.
Last Monday seemed like a good day for a spot of retail therapy, so Timothy and I went off to the K Mart sales and exercised the credit card well. I stocked up on cotton clothes suitable for the hospital, slippers, hats etc. I think Im pretty well prepared on that side at least.
I have set up a folder for all the information I have gathered so that everything is in one place, especially for the caregivers. It includes reports of latest research, helpful hints about coping with the process etc.
Contact points while in hospital:
Postal address: Ward 7 E, the Alfred Hospital, P.O. Box 315, Prahran, Victoria 3181
Phone number for the BMT Programme: 03 9276 3451; fax 9276 2298
Email address: firstname.lastname@example.org
I have been pleased to help raise funds for the fine work of the Bone Marrow Donor Institute and recommend to everyone to consider becoming a blood and bone marrow donor. They can be contacted on (03) 9342 7888 or at Locked Bag No. AAA, Post Office, Carlton South, VIC 3053.
From left: Mike, James, Miles, Nick, Tim, all giving blood to help promote awareness
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