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Hi
I’m new to the forum , I had non hodgekins disease in 1996 , then in February 2020 I was diagnosed with AML and had a bone marrow transplant in august 2020,.
I’ve been reading some of the posts , about how you feel post transplant so pleased to hear I’m not going mad ,no one mentions how you will be so it’s nice to have this forum
Comments
Hi Michelleanne,
I'm Steve, one of the online community champions here and had a transplant for ALL in 2013. I'm glad you've found the forum and that it it hopefully helping you. I think it's difficult for those around us, or who have not gone through what we have, to understand how it feels to have a transplant and what it takes both mentally and physically to get through it. A transplant is an incredibly tough process to go through, but hopefully this forum will help you and other see that you are not alone, and what has happened to you, and the experiences you've gone through, happens to others too.
I liken the forum to the wards during treatment and the waiting area in the post transplant clinics, where you were able to talk to other patients who might be at different stages to you and compare notes.The forum didn't exist when I had my transplant but I know from my time here that I would have found it really useful.
How have you been since your transplant? You'll be two years post transplant now so are hopefully more or less back to normal. Do you have any lasting effects and how do you feel now. Sharing each others insights helps other earlier in their transplant lives understand what they are going through.
Thanks again for posting and I look forward to hearing more from you.
Steve
Hi steve
it is the very hardest thing I have ever been through , it was touch and go a few times made harder with covid , not being allowed to see anyone , hard for my family .
I have a amazing team at the hospital and a wonderful family , they support you , but don’t understand .
i say this is the new me , the old me isn’t there anymore , I’m learning a new way of life , but is very frustrating .
we are very grateful for the life I’ve been given and enjoy everyday , even doing nothing 😂
Michelle
Hi Michelle, I totally understand where you're coming from with the 'new me' feelings. I've heard it a few times being referred to as the new normal and I've gone through it myself.
It's a case of getting used to your new limitations. We have been through so much during our transplants we are not the same. For me I'm not a strong physically as I used to be and I do get tired more easily, particularly when it is hot and sunny as it has been recently. I stutter and stammer over words and forget names due to the remnants of chemo brain. I do get frustrated by it sometimes but I think it's something I've learned to live with.
For me it's almost 10 years since I was diagnosed and in January it will be the 10th anniversary of my transplant. It took a couple of years to really feel like I'd recovered so you may be just about reaching that stage. I feel more or less like I did before I got ill in the first place, but do recognise that I have some limitations. But I also recognise what I've been through and above all else I value life so much more than I ever did before. I enjoy life and value my home and family so much having been so close to losing it. I think I'm able to put things into perpective a lot better and I don't get stressed over things as much.
As you say, enjoy every day, even if you're doing nothing.
Steve
Hi Steve
I totally agree with everything you say I am so content with everything
michelle
Hi @Michelleanne,
Claire here from the Patient Services team. I'm so glad that you've found the supportive community of the Forum!
I just wanted to let you know about the other resources available from our team, if that's ever helpful to you: https://www.anthonynolan.org/patients-and-families/get-support-us
All the best,
Claire
Thankyou I’ll have a look at that