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Tina, a freelance writer, joined the Anthony Nolan Register nearly two decades ago. Her interests include wildlife, motorbikes, re-enacting the 1940s and making greetings cards. In her mid-40s, she still feels, and acts (much to her husband's amusement) like a kid most of the time.
Tina started writing her journal as soon as she was notified by The Anthony Nolan Trust that she might be asked to donate her bone marrow to a patient in need of a transplant.
Friday 29th February 2008
I got a letter this morning addressed to me. I don’t often get letters just to myself, they are usually to Mr and Mrs Burton or for my husband Paul, so when I saw the plain white envelope with ‘London’ stamped on it in red, I was very curious.
I opened it to find a letter from the Anthony Nolan Trust, and thought it was probably just to update me on something or about fundraising. I’ve been on their register for a very long time – twenty years. No, it can’t be that long can it? Maybe fifteen then - and only very occasionally have I received mail from them.
I was in the middle of making a beef curry, so wasn’t really concentrating, but as I scanned the page, my heart lurched and for a few seconds it seemed like the world stopped.
I stood perfectly still; the half prepared curry forgotten as I read the words -
‘Some years ago you volunteered to join our register of potential bone marrow donors and supplied the necessary blood samples to carry out the first stages of tissue typing.
We are contacting you now, as your particular tissue-type is a partial match for a patient in need of a bone marrow transplant.
We would therefore be very grateful if you would advise us
as soon as possible whether you are available for further testing now.’
My first thought was ‘oh my God!’
You join the register but never really expect to get the call – or letter in this case. That sounds like I’m saying the decision to join was taken lightly, and it wasn’t. You should only join the register if you are absolutely certain that you’ll go ahead with the donation, if needed, at any future point. This is a long-term commitment and serious stuff; people’s lives are at stake.
However, many people can be on the register for years, and are never called for further testing.
I don’t quite remember the circumstances that made me join up. I thought it was because I saw an article on the programme ‘That’s Life’ about someone who had died before they could find a donor, but it was so long ago, I’m not sure.
I do know though, that whatever it was, it upset me a great deal, and made me determined to help someone if I could. I also became a blood donor as well.
Anyway, back to this letter. After the initial shock had worn off, I was so glad that I had informed the Trust of my change of address. We have moved house several times in the past few years - the most recent move only last summer - but the Trust are always one of the first people I inform. I cannot stress enough how important it is to let them know of any change in your details.
I then needed to tell someone, so I phoned my daughter at work. She was busy so I asked her to call me back, saying it was urgent – well it was to me!
She called back a few minutes later, worried that it was bad news – sorry darling – and when I told her what it was, her response was, ‘well you’ve got to do it Mum.’
This is something close to her heart, as her boyfriend’s father died of leukaemia before a donor could be found.
She had to get back to work, so I also phoned my husband, who said we needed to talk about it, which we could do when he came home for lunch.
I then phoned the Trust (before even talking with my husband) and was put through to Lisa Cawley, but her voice mail came on, so I left a message. Unable to wait though, I called back, and explained to the girl who answered the phone – I think it was Anna - about the letter and that I wanted to go ahead. (There was never any question of me not going ahead; I was just shocked to get the letter initially. As I stated earlier, you really should only join the register if you are willing to see the whole process through). Anna said that they would send me out a blood testing kit for my doctor or hospital to take a sample with, and then would I send it back, using the Jiffy bag and pre-paid label supplied.
Okay, that was fine I said, and hung up. Then the phone rang and it was Lisa, who was very kind and told me a little bit more. Because I’d had my initial test many years ago, they needed to test my blood again. With today’s modern technology, they now have a higher resolution machine, which is better at showing up how much of a match I am. Then if that goes okay, I can go in for blood stem cell tests. She also told me that there is a lot of information on their website. I had a look and found it very informative, with true stories from both patients and donors.
Hubby came home for lunch and I told him that I wanted to go ahead. Of course, he is concerned for my welfare, but he is behind me one hundred percent. Just as well really, because even if he had been against it, I would still have gone ahead!
I know perhaps more than most people how precious life is. I spent several years working in the funeral profession and have seen the grief people who have lost loved ones go through – if I can prevent that by saving someone’s life, it is the greatest thing I can do for them and I’ll do it gladly and willingly. I just hope that I continue to be a match and can go on and give a donation.
I admit to feeling a little emotional already at the thought of being a donor for someone, but this is just the first step, we have a long way to go yet...
Saturday March 1st
My blood testing kit came this morning, together with a lengthy medical questionnaire and a letter explaining about the blood test for the doctor/hospital – whoever agrees to do the sample.
I’ve filled in the questionnaire, but am a bit unsure about one of the questions. It asks if I have had a Hepatitis B vaccination, which I have. I had a course as a precaution when I first started in the funeral profession. I hope it doesn’t mean that because I’ve had it I can’t be a donor, as I’d like to go all the way with this, But obviously the recipient’s health is the upmost priority and no risks can be taken. There are a couple of other things too, which I hope don’t go against me, such as being on medication for high blood pressure, but having said all that, I am actually in very good health. My blood pressure has been well controlled for years, with excellent readings, and I eat healthily and exercise everyday.
I’ll phone my doctor’s surgery first thing Monday morning to arrange for the blood test. I hope they will be okay about doing it.
Monday March 3rd
I was still worried about the Hepatitis B thing, so I phoned the Trust this morning and spoke to Lisa, who said that it didn’t matter about the Hep B vaccination. They just needed to know, because I would be screened for certain things at a later stage. I’ve also been informed that my blood pressure reading is good, so no problems there either. Phew! With that clear, I phoned my surgery, who booked me an appointment for twenty past ten.
I got to the doctors early, but the nurse called me in almost immediately. It was a very easy straightforward blood test, which didn’t hurt at all. We packed the kit into the Jiffy bag, sealed it up and off I went, after thanking her profusely.
The only problem was that the bag didn’t fit in the post-box, so I had to walk to the post office. When I got there, there was a huge queue, and although there was a pre-paid label on the parcel, I didn’t want to just leave it in the parcel hatch – it was too precious for that! I didn’t want to queue for ages either, so I found a member of staff – the post office was at the back of a newsagents shop – and explained the situation to him. He was very kind, took my parcel and put it into the mail sack personally. That made me feel better; I wanted to physically give it to a human being, not leave it with other parcels where it could possibly get lost.
Okay, now I just have to wait for six to eight weeks for the results – these will be the longest weeks of my entire life I think!
To be continued…
