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CML bone marrow in a few weeks

Hi everyone.
A little bit of background was diagnosed with CML in Aug 14. 1st and 2nd line treatment and has failed now on 3rd line and due to have a bone marrow transplant in November. We have got a match which is a 100% match. Just wondering how people coped with no been able to see their children. I have two little boys that are nearly 4 and have been told that they will not be allowed to see me whilst I hospital. This is a massive amount of time to be away from them and just worrying about no seeing them. Thanks

Comments

  • Hi Laura my name is Billie and I work in the Patient Team.

    I can only imagine how difficult it must be to be preparing for transplant as you are knowing you aren't going to be able to see your kids for some of your hospital stay. I'm sure some patients will be along soon to share with you their experiences but I just wanted to let you know about our new book for children to help them understand when someone close to them is going through a transplant.

    You can order a copy through our website. https://www.anthonynolan.org/patients-and-families/order-or-download-publications It's called Lucy and the good soldiers and might helpful for your boys.

    If you have questions or need to talk to someone you can contact the patient team on 0303 303 0303

    Best Wishes

    Billie
  • Hi Laura,
    Sorry to read your post- I don't have the experience or answers but just to say I will be going through the same as you soon (. December or Jan ). But for Hodgkin's. I have a 2.5 yr old and so would also like some support from others out there on this. I wish you well.
    I am waiting to be called for the meeting..., dreading it!

    Where will you be treated? I think I will be uclh x
  • Hi Laura,

    Really feeling for you. I have done two transplants in the last 12 months and this was probably the hardest thing to cope with. I have 3 children under 10, and it was really difficult not to see them for an extended period.

    Do you have support from partner/friends/family/school? My wife did an amazing job and she set up support from people in the village, family and got the school on board as well. That gave me confidence that they were ok, and so therefore all I had to deal with were my own emotions about not being around them. That is not easy either, but it means you are at least just dealing with yourself, rather than worrying about them as well. They will miss you horrendously, but you will soon be out of the other side and it is surprising how quickly things will get back to normal.

    I made the decision not to see them whilst I was in hospital. I didn't think it was the place for them and you will likely feel pretty grotty anyway, however, I think most hospitals would help you come to some arrangement if you pushed for it - I certainly remember seeing youngish children on the ward anyway.

    Wishing you (and Elmambo) all the very best with this. Just remember why you are doing this, and that any temporary hardship will be more than compensated when you come out of the other side.

    Sending you both warm wishes,

    Greg
  • Good morning Greg, how are you doing? Thanks ever so much for reply. Helpful and kind as always.
    In my mind I have decided not to see my toddler too, same reasons as you mentioned. I think it may be easier and th risk of infection.... so high! I remember last winter she had some form of cold for 6 Months! Hopefully now she is a little older it won't be so bad but being at nursery she will certainly be full of bugs. And yes, feeling poorly won't be nice for her too see, and for us to plan a visit either as my partner and daughter will need to travel 50 miles to the hospital.

    I just can't get this meeting out of my head, Greg. The cold hard facts. I'm really really down about it at the moment and had a bit of time off the internet.... but I soon get drawn back in.

    Sorry Laura I didn't mean to jump in and hijack your post at all. Xx
  • Hi Laura,

    I guess this must be really difficult for both parties where younger children are concerned. My twin boys were 12 when I had my transplant so were better able to understand what was going on and why I was in hospital so from their perspective it was probably easier. I was able to see them whilst I was in hospital and could have seen them every day potentially if I'd been in my local hospital. As it was I saw them once a week for a couple of hours on a Saturday thanks to being in a hospital 30 miles away from home.

    For me this worked out well and I was still able to keep in touch with Skype and telephone though I appreciate it may be more difficult to do that with 4 year olds. It may still help, particularly if they can still see you on skype or facetime, but clearly it will be no substitute for personal contact.

    As others have mentioned the risk of infection from younger children is probably the overriding factor that the medical team will be concerned with in imposing a no visiting regime, as younger children are possibly more likely to pick up and carry infections than older ones.

    Hopefully the no visiting rules will be shortlived and will be able to be lifted once your counts start to climb after your transplant. As long as you are sensible about keeping them away if they have coughs or colds and make sure they are clean and wash their hands when they visit I don't see why that shouldn't be possible.

    I think the other thing to think about is what Greg has mentioned, about maybe not wanting them to see you when you're unwell at the height of your treatment. I'm sure they have some experience of seeing you feeling poorly through the treatment you've had so far but the transplant is a tough process physically and may make you look more unwell than you already have to date. Maybe in that instance having a 'remote' method of keeping in touch could help?

    I hope this helps a little. It is no doubt a tough one for all of us and no less so for a mum with young children. Good luck and please let us know how you're getting along.

    All the best,

    Steve
  • Hi Elmambo,
    Thanks for your message. Don't worry at all about your emotions. This is a big thing and it is very natural to feel the way you are. The main thing I can say is to definitely not over-use the Internet. It can be an amazing source of info but it can also lead you into an unhelpful spiral. When I had acute gvhd, I read all sorts of articles, checked my symptoms and was convinced I was going to die. But I didn't and came through it. I look back now and think although it was useful to learn about gvhd, all I really achieved was to take myself to some very dark places for no reason at all. You are a unique individual so statistics and other people's stories are never going to tell you what will happen for you. For the meeting, I would suggest writing down a few key questions that you absolutely want to cover and then forgetting about it - just get on with living life as best you can.

    I realise how hard this is in practice and how hypocritical I am being (I spent most the early hours of this morning on the internet trying to find out why my blood counts are so low so long after transplant). But it really is the best way. If you have a burning question, use the Internet just for that, but then really force yourself to switch it off if you find yourself spiralling. I got psychological help with this a few months ago - it is about recognising when your brain is taking you into your cave or when you are about to jump on the "what's the point" train - you know it is headed for some dark places but you still get on anyway - so it is about recognising when you are about to get on the train and pulling yourself back to the platform. The brain is a muscle and it's job is to have thoughts - but sometimes those thoughts are not helpful so you need to train it like any other muscle to think differently.
    Sorry if this is a bit bonkers. I had a rough time of it post-transplant and the psychology stuff really helped me out so I just can't stop myself passing it on.

    I can't tell you not to be down, they are your emotions and you are entitled to feel them. I guess it is just about recognising when your brain is starting to take you somewhere you don't want to go, and then doing all you can to pull yourself away from that.

    The transplant process is pretty tough so it is entirely natural what you are feeling. Everyone on here and other forums is here to help and support. But if you're finding it too hard to cope with, please mention it to your team and get some professional help that will be specific to how your brain works. It really helped me.

    I will be thinking about you (and others in the same position).

    Greg
  • Dear laura just to wish you all the very best of luck over the next few weeks I have only just discovered this site I would like to wish you welll I had a transplant over 30years ago and have never looked back and I know several others in the same situation. Keep your chin up girl and hopefully you will be looking back soon and smiling love and very best wishes Vivienne xxxxxxx

  • Hi Greg, just a quick sentence to say how amazing that message was and advice on how to try and stop your thoughts going down a certain path, and retraining, it makes total sense and I actually feel for once like that's the kind of support I need! I have rejected the idea of counselling I think I need more of the psychological help. Thanks again! Have a nice weekend x
  • Hi Elmambo, thanks so much for your note. Really glad it could help in some way. Hope you manage to get the support you need on this. Very happy to share my experiences if needed and helpful. All the very best, Greg
  • Thanks guys. Emotions are still in turmoil, but all your comments have been taken on board x
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