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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

New to all this

Hi everyone my journey started 6mths ago when I had the devastating diagnosis of AML and had to have a Sct im 3mths post transplant and all seems to be going well physically but now I've had time to reflect on the events find myself feeling very "unsafe" can I trust in my body again or will it be years as some posts suggest?grateful for any advice.

Comments

  • Hi Katy,
    I think it is going to take time. There are so many variables related to how quickly a person feels back to “normal”. It is still early days for you so I would just look after yourself and take things one day at a time. It is true that a lot of people find that at your stage is when things get psychologically difficult as opposed to physically, so please look after that side of things too and I’m sure it won’t be long before you find the confidence returning.
    All the best,
    Greg
  • Thanks Greg it still all seems surreal,I need to be thankful each day I feel well but the diagnosis just terrified me and that will take time to process I guess,it's helpful to read all the positive posts.
  • Hi Katy

    Like yourself post transplant i found myself distrusting my body, i believe it is perfectly normal to have such thoughts. Has any support been offered to you regards counselling? I would highly recommend counseling and mentioning how you feel to your consultant &/ or CNS, whilst their primary focus is the physical i know many consultants do not underestimate the importance of a positive mind and mental wellness.

    Rachel
  • Hi Rachel yes my CNS mentioned counselling,there is a long waiting list but I may well put my name down as I had a horrible panic attack today as the enormity of what's happened caught up with me,thanks for the advice.
  • Hi KatyB

    I am 8 months post transplant for AML and like a lot of patients have worried myself silly about relapse and infection since my transplant. I recently spoke to one of my doctors who said that a lot of patients suffer from a form of post traumatic stress disorder around a year after diagnosis. I had the conversation with him a year him a year and one day after my diagnosis. He also talked o me about the statistics for AML including relapse and explained that unlike some cancers the risk for AML reduces over time. He has really helped me to put things in perspective and sort out the chaos which was going on in my head. I think PTSD is a massive thing for a lot of patients and would really like to see more information on how to cope with it. After every we go through it's a shame to spend the rest of our lives worrying..

  • Hi HS17 thanks for sharing your experience I think you are right that all the focus is on the physical recovery but I guess resources are limited and psychological help down the list of priorities,I am really trying to help myself by getting out and about and getting fit again (used to hit the gym 3 times a week) I think I'm honestly going through a grieving process for me as I was before I got sick,l miss the luxury of peace of mind which we all take for granted pre illness but I will take all the support I can get and try to think positively,I will have reached 100days on weds and have had a good recovery so far which is something to hold on to.
  • Hi KatyB

    Thanks for posting, I am the lead nurse in patient services. It is very normal and completely understandable to feel the way you do. Its such a whirlwind from diagnosis to transplant that when you begin to feel better you then have more time to reflect on what you have been through. It affects people at different times too. You sound like you are being very pro active which is brilliant and getting out and starting to exercise is a great idea and will benefit you both physically and psychologically. Have another chat with your CNS about the counselling referral, tell her about the panic attack and she might be able to get you seen a bit quicker. In the meantime consider mindfulness, this might be a good way to help. Either a class or there are some very good apps.

    This is a normal reaction, 3 months post transplant is early so don't forget that you are doing well. Don't put too much pressure on yourself, it will take time but you will get there.

    BW
    Hayley
  • Thank you Hayley I will heed your advice.
  • Hi Katy, as others have said you're not unique in feeling this way and it does take time to have confidence in your body and your immune system. You will feel safer when your recovery gets further down the line and you start to feel more yourself.

    Things like having your childhood immunisations will help, and conquering simple bugs like a cold will help build your confidence. It's difficult to put your finger on when it happens but there is a point for most of us that you feel that you are back to 'normal' and can have faith that your body can look after itself again.

    There's no doubt that what we have been through has a lasting effect, and I for one am more conscious of things like hand hygiene and such things, but you will eventually feel that you can do all the things you used to enjoy beforehand without putting yourself at risk.

    At 3 months post transplant you are very much in your infancy and you probably realise there is some way to go, but take each day at a time, set yourself goals and milestones and celebrate each one as it arrives. Nothing big but little things like getting off immuno-suppressants, each time the frequency of your check ups are reduced, your first trip out on your own, your first meal out and so on. Setting those small goals and achieving them will help you feel that you're making progress and build up your confidence.

    Please let us know how you get on and what you find useful.

    All the best,

    Steve
  • Hi Steve thanks for the advice I'm already feeling better knowing I can share on here and get sound advice by people who have gone through the same experience.
    Tomorrow is my 100 day mark and I can see how far I've already come so onwards and upwards!
    Katy
  • Would like to add that I've experienced panic attacks when I try to do things I would have done in the past without thinking and have cancelled plans I've made as a result . I now try to make sure I have all bases covered before I go somewhere for example if I don't feel like driving can someone give me a lift or can I get a taxi or use public transport (public transport is probably not advisable at 100 days as you will still be on immunosuppressants). Will someone be able to help me when I get there and if I get tired is there somewhere where I can go to sit down and get a coffee? I know I will still get panic attacks, I'm going on holiday soon which is going to be interesting but I also know how to cope with them when they happen. It drives my family crazy but it works for me.
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