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Hello from new member

Hello, I have just joined your forum.
My husband was diagnosed with AML in January 2017 and was treated with chemo only as he was classified as good risk. Unfortunately he relapsed eight months after being discharged from hospital and is now undergoing two more cycles of chemo in preparation for a SCT.

Comments

  • Hi Jane

    Welcome to the forum and thanks for posting, I am the nurse specialist in patients services. I am sorry that your husband has relapsed and now needs a transplant. I am sure you have lost of questions about the preparation and what to expect and i would encourage you to discuss these with his consultant. It can be a lot of information so take your time, write things down and go over anything as often as you need. My advice would be to take it one stage at a time otherwise it can feel a bit overwhelming. We have lots of information on our web pages that you might find useful in preparation for the transplant and for his recovery which you an find here https://www.anthonynolan.org/patients-and-families
    You are also welcome to call me if you have anything you would like to discuss, my number is 0207 284 8229 or 07824 139246.

    Keeps us posted and I am sure that you will get lost of support from the forum.

    BW
    Hayley
  • Hi Jane Sorry you’ve experienced the horrors of AML my son was diagnosed in Sept 2016 , as Hayley says take it a day at a time I ve learned to live in hope not fear ...my husband died in 2013 so it’s me as he’s main carer it’s not easy but you find ways to cope . I wish you and your husband all the best and use the resources available call Hayley she’s really helpful , Much love Christine x
  • Thank you. I hope that we will feel better about things once we have had a meeting with the transplant hospital, although I have no idea when that will be. We have asked our current team what the plan is and have been told that we will be contacted by the transplant team when they are ready. My husband has so far been receiving his treatment at our local hospital and this has been stressful enough, but I dread to think how we are going to cope when we are dealing with the transplant hospital, which is a two hour journey away. It really is overwhelming at times.
  • Hi Jane,

    I'm one of the online community champions here and had a transplant myself for ALL in 2013. My treatment plan was always a transplant from day one as I was at a high risk of my Leukaemia coming back.

    I suspect it feels a bit daunting at the moment hearing that your husband has relapsed and must come as a blow if he'd recovered from his previous treatment. I'm sure you are still trying to get your heads around it at the moment but hopefully a meeting at the transplant hospital will help. If you haven't had that meeting yet, go armed with any questions you want to ask written down and make sure you go through them all.

    The link that Hayley has provided will give you some background but there will probably be other questions you want to ask, or things you do not understand, so listing them out beforehand will help you avoid missing anything.

    Regarding the transplant hospital being a distance away, I was in a similar situation with my wife as I was treated in Leicester but live in Northampton. That was an hours travel away and the best part of two hours by the time she'd got somewhere to park! We overcame that by reducing the amount of times she came to see me, which also helped keep routine for my sons. So my wife and my boys only came to see me in person on a Saturday morning with the occasional midweek visit for special occasions. The rest of the week we kept in touch by phone or Skype. That kept the travelling down and made things a little easier. I'd suggest that if you plan to visit daily you will find it very tiring very quickly so you may want to think about how frequently you plan to visit and speak to your husband about this.

    Please stick around for support here as we are all at various stages of transplant and there will always be someone in your situation, or has been through what you are facing. We all react differently but we all understand how you and your husband are feeling and what you are going through.

    All the best,

    Steve
  • Dear Jane , time has moved on so I am sure plans are firmly underway for you . We live in Cornwall and my sons transplant hospital is in Devon it’s certainly not easy during transplant I literally lived there and rented a property close by , we travel by car when we have to go there and our local hospital share post care as well as they can . It’s daunting but somehow you’ll manage ask for help and accept what’s offered I wish you and your husband much love I am pleased Hayley’s been on here to you and Steve it all helps Christine
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