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On the 12th June I got out of isolation. My doctor scared the wits out of my wife. When she arrived to visit, he threw open the door of the isolation unit in mock rage to tell me I must eat more. All she could think was that the door must be closed to keep the germs out! Nowadays autos are not even isolated! The consultant's visit reassured me that the graft had taken and 'now we know how to freeze it'. While not quite true, it shows how close to the forefront we were. I left the isolation unit and walked down the corridor to a little seat outside the door of the ward. My son was sitting there. I hadn't seen him for a few weeks. Children weren't allowed onto the floor. I was bloated, had lost hair and was in my dressing gown. I sat beside him and started to talk to him. He didn't recognise me.
The next week saw all the bits the doctors were checking go in the right direction, and I was discharged, with lots of instructions, on 19/6/85. And they wanted to see me again soon. Very soon and very often.
And the rest, as they say, is history. And for anybody recently having done this, yes, the check-ups do get less frequent, the appetite returns, the hair, the feeling in the fingers and toes all return. And like everything else in life, your memory of the experience fades and your priorities slip back to being about the everyday concerns that everyone else has. By having an auto, I know I had it easier that an allogenic. No GVHD for a start! I have stopped my annual appointments and am on no medication. I can't say I'm back to 'normal' because you can't have had cancer twice and a BMT without it affecting your outlook. Life's too short to worry about little things. I try to be more tolerant (although fools are still hard to suffer) and understanding. You just never know what other people are going through in their lives.
In 1995 I heard a mention on the radio for a 100km walk in Lapland with the funds going to the Bone Marrow for Leukaemia Trust. It came at the right time for me. I wanted to give something back. I started collecting and with great support we soon exceeded the required target. I did my 100km walk. If you've never done one, this is a great bonding and humbling experience. You meet wonderful people, most with a story to tell, a reason to be there, a way they have been touched.
About a year later I got a letter telling me of the Bone Marrow Transplant Support Group. Bit late now. I didn't feel I needed them any more, but maybe I could help someone else. I am not unique. Many people every year have BMT's and are doing well, but it is something most people in the street don't come across. It's good to talk.
A couple of years later, I heard a radio advert for a lymphoma support group, Hodgkins United Group. They had a phone in service where newly diagnosed patients could talk to trained volunteers who had already been through the journey. I made contact with the group, which later became Lymphoma support Irelad, LSI. I didn't need to talk to a volunteer, but wanted to offer my experience to the group and to those who could gain encouragement from my story.
I'm now active in the support group and involved with the newsletter and the web site and if nothing else I try to be there as encouragement to those who are just at the start this road. I have the T-shirt.
-o- Ambrose - July 1999 -o-
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