Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

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

  • Hi, Hayley, thought I would check in, though not sure if this ought to move onto another thread now.

    I think the recovery time has been so much more difficult than treatment for my son. It's difficult to know if he is in any way unusual, but there have been a lot of complications, with a few admissions for infections, and he is generally suffering with effects of either treatment or drugs. After some promising blood counts, things faded away as his condition went downhill during Oct/Nov, but they have now turned the corner again - phew , and though pretty low still, it's a big relief to see him making his own blood again, as he is/was treated for VSAA.

    It's really hard to see progress for him as he has gone backwards so much since transplant and is currently living with a lot of pain. We seem to have weeks when he doesn't leave the sofa and the only social thing is clinic, when he makes everyone laugh and then comes home exhausted with another bag of medication. He doesn't ever complain, but it's not much of a life for an 18 year old. I would like to get him doing more, but he's just not really well enough. May be next week?!

    So there is a challenge for 2020 to deal with all the complications one by one, and improve his overall condition to the state where he can go back into education in September.

  • I'm sorry this has gone off the worry topic. It comes in waves. Of course it's good to do all those things that keep you going, like treats, and exercise, and fresh air/nature, and friends. But I do feel like a coiled spring at times, and that's very wearing. But I suppose we all just need to keep going.

  • Hi there,

    Thanks for the update, it sounds like you're son is having quite a roller coaster ride. I hope it helps if I say it's quite common and we all have ups and downs to some degree, some more than others.

    I have 18 year old twin boys so I can relate to their lives and the impact your sons condition must be impacting what he is able to do. It must be so frustrating for him but it's a case of taking each day and week as it comes and focusing on getting better, which will come eventually, but it is a very slow, long process unfortunately.

    I hope the new year brings good fortune and it's a healthy one for your son. Hopefully he can stay clear of infections and get on with his recovery so that he can get back to some normality, which will be good for you all.

    Best wishes,

    Steve

  • Hi

    Thanks for the update, I am sorry that it continues to be tough for you and your son, he has certainly had a really challenging year. Its incredibly difficult when progress is slow and you feel stuck in a cycle. You are doing an amazing job to try and keep him motivated but it's understandably quite wearing for you too.

    At the end of last year I suggested that your son try and access some support, how did that go and have you had any support yourself? Its very important that you look after yourself as well as your son and have some time to do the things you like. You can ask your GP what services are available to you in the local area which might help, as well as making time to spend with friends and family and ask them for their support. Most of the time people want to help but don't know what you need.

    In terms of daily routine, on the days that your son feels better encourage him to get outside and make contact with friends but trying to not over do it so he ends up being too tired the following day. You could ask at the transplant center if he could see a physio or occupational therapist who could help him manage his fatigue. Try and break the routine and use other sources of support that is not related to transplant. He might be able to access exercise prescriptions from his GP which means that he can get some gentle sessions with a personal trainer at a local gym which could give him some motivation and a change of scene, however I would suggest you check with the transplant team before doing this just to ensure he is ready. The Teenage Cancer Trust (TCT) hold events for young people to help them connect and get back to life after treatment, you can find info here for events like Find Your Sense of Tumor and Way Forward which might help. They also provide information and support for going back to education.
    https://www.teenagecancertrust.org/get-help/how-we-can-help/support-programmes/find-your-sense-tumour
    https://www.teenagecancertrust.org/get-help/how-we-can-help/support-programmes/way-forward-programme

    I hope in the next few months the situation improves and please consider getting some support if you do not already have it. As always you are welcome to call.

    Best wishes
    Hayley

    Dieseldrinker62
  • Thank you Steve and Hayley. I am sure things will improve, and we are lucky to live in a village community and have a supportive family and workplace. My concerns are mainly for my son who does not have many local friends and whose school friends are now away at university - though social media is fab for him. I'm not sure if he is eligible for TCT support as he does not have a malignant condition.

    The symptom relief team at the hospital are now involved and have encouraged my son to speak to the psychological service. so hoping that will result in support soon. He's unsure he needs anything - he just wants to feel better, then get on with things, so perhaps they can help him deal with that change of expectation. Probably the best thing would be him being able to exercise, and there is going to be a programme of physio for him, but it all takes time to put in place, which is frustrating. I will ask about exercise prescriptions, though he probably needs to be further down the line.

    I did have some support from the hospital when my son first went in for transplant, which was helpful. I think the chat/rant with a friend over a cup of coffee or dog walk is more useful to me now. I'm just weary of it all and there isnt much that can help that, other than recovery.

  • Things have unfortunately been utterly miserable for my son who has added new infections and antibiotics to his tick-sheet and is very low. Frustratingly the psychological service can only offer help with dealing with the pain in ten weeks' time, which is so unhelpful as to be laughable. Symptom control have been disappointing and more interested in fobbing off than making useful suggestions. My son has not eaten for a couple of weeks owing to severe mouth pain and nausea and is only just managing iced water and a little iced milk - living off the fat of previous steroids, I think. He is not able to talk without pain.

    I have let the team at the specialist hospital know that I am not at all happy about the situation but worry that as my son is now 18, I have very little voice and will be written off as an interfering mother.

  • Ten days on and my son is slowly picking up, though has been through the mill again. There was apparently a disagreement between the two hospitals as to whether his needs were acute or chronic, with him in the middle in continuing pain and not eating or drinking. Eventually an apology was made and a more realistic drug regime put in place, together with a plan to start to regain some of the 6kg he lost in the two weeks while this was going on, but it is difficult.
    So we're trying really hard with the daily 41 different doses/mouthwashes/monitoring together with shakes etc and hoping for improvement soon.

  • Hi again and thanks for the update. Your son truly has my sympathies as the daily routine of numerous mouthwashes and surviving on milkshakes, which were about the only thing I could tolerate, is something I remember very well.

    I can't remember whether you'd said the mouth pain was due to GvHD or an infection. In my case it was a fungal infection in my mouth and caused a lot of pain, so I do understand how he must be feeling. My tongue was white, and the surface was split and cracked which made it unbearably sore. I wear a partial denture too which I was unable to wear due to the roof of my mouth being so sore.

    Persevering with the mouthwashes and antibiotics did get on top of it though and it was relatively short lived. Hopefully in your sons case he will start to see some improvement soon with less pain, which will help him feel more positive and spur him on in his recovery.

    It can be frustrating at times when you feel that you're making no progress, but it will come in small stages and I hope it will continue upwards from there.

    You mentioned previously that there was no psychological help for 10 weeks. Is that still the case as that doesn't seem right. Your sons state of mind at this point is critical and he needs some support to help him while he's feeling low. And don't forget yourself. Seeing your son going through this will undoubtedly be taking a toll on you as well so you must seek help yourself and make sure that your welfare is taken care of. As Hayley suggested previously, seek help through your GP as to what support you can get to help you through this.

    Please pass on my best wishes on to your son and tell him I understand how he's feeling, but when he gets better, hopefully like me it's not something he will have to suffer again.

    All the best,

    Steve

  • Steve, you are really kind, thank you for replying.

    The docs think the mouth pain is as a result of side effects of ciclosporin. Our dentist says it is Acute Necrotising Ulcerative Gingivitis. It is definitely improved after a course of antibiotics and weekly trips to the hygienist, and all the (gentle) brushing and mouth washing. But progress is slow and even water is still painful. He is limited too by ongoing nausea and gastritis and it's a real challenge to get the calories in, but he did enjoy watching the rugby at the weekend with friends.

    My son has now seen a psychologist, and has another session booked, which is great as it's tough dealing with such a long illness, and particularly hard when the parameters of the illness are constantly extended. I think to begin with he was assessed as an adult and told 10 weeks, but the team at the hospital managed to organise something sooner when they realised how much he had gone downhill. Now that things are improving for him, we are all much happier.

    So we are keeping going and looking forward to a more normal life.

    Dieseldrinker62
Sign In or Register to comment.