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new to the forum; popping in to say hello

Hello Everyone,

I just wanted to say hello and let you know that during the past few months I have been looking on this forum and taken heart from the fact that there seems to be so much mutual support for people affected by blood cancers and their families.

My daughter was diagnosed with AML and has recently had a stem cell transplant. We know that she has a long journey ahead of her, full of highs and lows, but having read your stories and posts we know that we are not alone and your experiences and insights have helped prepare us for what is ahead. If there are any other parents on this forum caring for a young adult, I would love to get tips on how to balance keeping her safe (particularly during the early stages) and recognising that she wants to feel normal and LIVE again. She is still < 100 days and chomping at the bit to do as much as she can. I am in awe of her spirit and determination but as her mother, I am going greyer by the day!!

with best wishes, S.

Comments

  • Hi there and welcome to the forum. I'm glad you've found it useful over the past months and I've no doubt it will have been and still is an anxious time for you. I don't think anyone can fully appreciate what you are going through until you speak to someone who has gone through the same, so that is why this forum makes such a useful resource as we patients can share our experiences and concerns.

    As you've probably read me say before, everyone is different and the way your daughter will react to her treatment will be unique to her, but I know there are other parents of young persons here and hopefully they will be able to give you some tips and advice. It would probably be all too easy to wrap her up in cotton wool to protect her but I guess you can't stifle her completely and need to give her some freedom to be herself and perhaps keep a watchful eye on her from a distance.

    In the early days after transplant she will be susceptible to infection so it's a case of being sensible about what she does and where she goes and be aware of people around her who have coughs and colds in particular, so perhaps limit the number of people she can be exposed to, so avoid crowded places.

    If she only had her transplant recently she possibly still feels a bit under the weather so might not want to do too much herself, but as time goes on and she gets her strength back she may become more active, but all being well her immune system will also be getting up to speed allowing her do do more things.

    Those are my thoughts on it as an older patient but there will be others here that have gone through looking after a young adult who can give you a better idea of the strategy for caring for her whilst allowing her some freedom.

    How is your daughter at the moment? I hope she's doing well and her recovery is speedy and straightforward.

    All the best.

    Steve
  • Dear Steve,
    Thank you for your welcome to the forum.
    My daughter is doing well so far but with the odd hiccup which, as you know, we should expect. But even knowing that it is to be expected, it doesn't make it any easier : (
    thanks again and best wishes

    S.
  • Hi Supanya

    My name is Hayley and I am the new Anthony Nolan nurse specialist based in the patient experience team. My role here is to offer additional advice and support to patients and families who have been affected by blood cancer and stem cell transplant. I will be working 3 days a week in the office.

    Thank you for sharing your experience, it must be a very difficult time for you and your family. I am glad your daughter is doing well so far and I hope that it continues. Post transplant is often an uncertain time with no one able to tell you how your daughter is going to respond and what side effects she might experience. From a medical perspective keep asking questions to your transplant team, they are there to keep you all informed. To know that how your daughter feels or that a particular side effect that she is experiencing is normal is really important and your team will be able to do this.

    Using this forum for support is also essential, the advice that can be given by patients and their families who have experienced a transplant and the side effects is invaluable. Also be reassured by all the people that have had a transplant and are now getting on with their lives, there is light at the end of the tunnel.

    Please send my best wishes to your daughter and if you do have any questions or concerns please feel free to contact me.

    Best wishes
    Hayley
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