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Worry about it all!

I am a parent of a teen about to undergo BMT. We have, over the last few months, settled into a life of blood tests, transfusions, appointments and of course lots of admissions. So I am really grateful for the chance of treatment that my teen has been given. But I am so worried as the date approaches.

Up to now I have tried very hard to deal with each day at a time and not to look too far ahead at things that might not happen. Now I am worried about it all, and worried too that I should be mugging up on the 'homework' about expected side effects. Having had a few 'high drama' admissions, I'm dreading more of the same.

I am worried about whether I should return to work when my teen is having treatment - I had thought it might give some structure and normality to me, and space to my offspring, who might rather deal with being ill without me hovvering. But then I'm worried that I won't know what is going on with treatment, as communication isn't always the teen's strong suit. I also have a job which brings me into contact with low level illness regularly, and though generally I steer pretty clear with good hygiene etc, you never know... so that worries me.

My teen is keen to get on with things and very cross if I get weepy. I don't feel I can speak to the hospital staff about it.

Thank you.

Comments

  • HI
    I am the lead nurse in the patient services team, thanks for posting. You are in a difficult position wanting to give your teen space but also keeping a handle on what is happening, I am sure its a common experience for any parent of a teenager undergoing a transplant.

    It is good to take it a day at a time, it can feel overwhelming otherwise. It's a shame that you do not feel that you can talk to hospital staff, have you discussed your concerns with the transplant coordinator? They should be able to give you information on what to expect after the transplant and will be able to tell you about support services available within the trust. We can offer information online, we have our body, mind and life sections which take you through the recovery or we have several booklets that could help. The Next Seven Steps is a comprehensive booklet that covers all of post transplant recovery or we have our essential guides that covers one area at a time like infection, fatigue, diet etc. https://www.anthonynolan.org/patients-and-families
    You are also very welcome to call our team on 0303 303 0303 and you can talk to me about any specific concerns that you have. Other charities that might be able to help with support are Teenage Cancer Trust and Clic Sargent

    With regard to returning to work, whilst your teen is in hospital it might be a good time to continue to work and visit as normal, especially if your teen is happy with this. When they go home this can be the time to take off as they will need support, often with issues like fatigue and nutrition. When they are in hospital they will have the support of the nurses and medical team. This is of course your choice and what you feel comfortable with.

    It is very challenging time for you and your family and everyone has their own way of coping. Its normal to feel 'weepy' or scared so please discuss this with the transplant team or GP, they might be able to get you some support which would help. Recovery after a transplant can take time so its best to plan your support now.

    If you have any other questions please get in touch and keep us updated of how your teen progresses.

    BW
    Hayley

  • Hi Ian going throug the same my son is in hospital now he having a stem cell transplant and I know how your feeling has on day 4 and it's just a waiting game iam worring about everything going over everything side affects it's like you feel hellpess so I have gone back to work while he is hospital and to give my son space to and it's helping because I was just getting obsessed with it all and constantly worring was making me feel ill so it's helping going back to work

  • Hi Gabby, I hope that all is going ok for you and for your son. I really feel for you and am glad that you have found working helpful..

    My son is still in hospital, currently on day 25 I think. I'm not as panicked but had to stop work again as it was too much. It has been easier just focusing on the hospital things, and I have had psychological support from the hospital, which has helped.

  • Hi motherAA is is very hard my son is home now he's on day 37 it is harder wen they get home the hospital visit twice a week is very tiring and all the medication they have to take the after care is not it's best but just have to get on with it now iam worrying over gvd and in case that comes on but fingers crossed hope everything goes well for your son keep in touch xx

    Dieseldrinker62
  • Hello Gabby, hope your son is making progress. Mine is very fed up - went back into hospital six days after discharge with gut issues/ infection. Think he must be getting better as he's getting crosser! The medication really doesn't help - hoping to swap some of the worst ones for others, but it's tricky when you want to keep other symptoms under control.

    Cell counts have been slow to recover, which is frustrating and still leave us with a lot of uncertainty, to say nothing of continual transfusions. i just keep thinking that it must be good to keep inching forward and that there may be a rise soon, though every infection seems to slow things down.

    Dieseldrinker62
  • Hello Mother AA and Gabby. My recovery was slow but it did happen. Hang in there and try to keep positive. It does help. Trust me.

    Dieseldrinker62
  • Hi Sean and anyone else out there, thanks for your encouragement. White cellls better than platelets/Hb, another trephine due, consultant unimpressed by numbers and talking about a top up.
    So really hoping that even a little bit of late activity might start showing.

    Dieseldrinker62
  • Hi, folks, thought you might like an update. My son had a second transplant of stem cells from the same donor and has been doing well since. His platelets and Hb are just below normal range at day +90 since the second transplant. White cells and Neuts a bit sluggish, so hoping those will gradually improve. Very grateful for the donations and for the care he has received.

  • Hi,

    Thanks so much for updating us, its great news that your son is doing well. Please send him our best and keep us posted on his recovery.

    Best wishes
    Hayley

  • Thanks Hayley. The numbers have been improving but he is now struggling with GvH. Feeling like we are going backwards, with son nauseous, not eating and fed up on sofa, and a sudden increase in tests and appointments. Of course that's great, they are trying to sort him out. But it still feels like the edge of a cliff again.

  • Hi,
    I am sorry that he is having a difficult time. GvHD can be very challenging not only physically but mentally as well.

    GvHD will be something that the transplant team will be looking for and is a good sign that the top of of cells is working. The reaction of GvHD that it has caused can also cause graft versus leukemia effect (GvL) which can keep the disease in remission and help improve the blood counts. That said, GvHD can be tough and will need closer monitoring and more appointments. Its important that they keep it under control until it begins to settle and then the frequency should decrease and your son can move forward.

    Have you spoken to him or the transplant team about how he is feeling? It's been a long year for all of you and it would be very normal to need some support. They should be able to provide some support or at least point you in the right direction. Recovery can be long and feel like little or no progress is being made even when it is. We have some information on our webpage about recovery that might be useful
    https://www.anthonynolan.org/patients-and-families and we also have a young persons guide that he might like https://www.anthonynolan.org/sites/default/files/1230PA teen and young persons guide.pdf

    You can also give us a call on 03033030303 if you want to have a chat. Keep going, it should all start to get a bit easier soon.

    Best wishes
    Hayley

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