Hi, I was diagnosed with Acute myeloid leukaemia (AML) in December 2023 and have had 4 rounds of chemo and been in hospital for approximately six months. I am pleased to say I am in remission and only need to attend hospital for three monthly bone marrow tests.
I am obviously relieved that I am in remission but I’m finding it hard to get some kind of normality in my life. I have really bad anxiety - not about the cancer coming back but just about every day ahead. When I wake up in the morning I am filled with anxiety and dread for the day ahead that it’s almost impossible to get out of bed. Once I get up it’s just panic and fear of what to do. I’m also very emotional and tired easily which is hard to cope with.
Hi @Janice1 I am so glad that you have found us and as I read your post I was struck that you had been in hospital for 6 mths having treatment.I am not a medical person, this is just my thoughts.
That was a long time to be looked after in the safe environment of hospital and I expect you and your body have been through a lot medically, emotionally, psychologically and practically.
Perhaps be very kind to yourself and give yourself time for your body to recover and and your batteries to recharge. A good nourishing diet might help and perhaps your energy level will improve over time.
It is good news that you are in remission, but suddenly you are released into the big wide world again without that support…
It takes a lot of courage to post but shows that you want change.
I remember at the beginning of Covid we all isolated indoors for 13 weeks and when I went outdoors again the traffic seemed so fast and loud and my sense of smell and fumes was really heightened.
It felt a scary place. It took time for this to subside
Do you have any support that might just go for a short walk with you.
As for your anxiety perhaps you might consider seeing you GP to see if they can assist.
It might mean some medication and/or therapy .
I had some talking therapy and it really helped me, it is not for everyone.
The Blood Cancer Support line is also there for you on 0808 2080 888.
Anxiety is horrible and can rule your life, it takes time for it to subside to a more manageable level.
Just take small steps and please do keep posting we are here for you.
Spoil yourself and really look after yourself and please do keep posting xx
Hi @Janice1.
I can see @Erica has given a great reply and I echo what she says.
For me personally, the period after my treatment, when hospital visits stopped etc was the hardest time for me.
I felt really low and took a while to work through it. I found counselling very useful during this time. It’s not for everybody but there if you think it will help.
I think you’ll find others feel this way as well. You’re definitely not alone. It’s all happened really quickly for you and it will take time.
Please be kind to yourself and don’t give yourself a hard time for feeling the way you do X
Hi Erica and Nichola thank you so much for your replies. They were very understanding.
I am going to look into counselling soon to see if it helps. I know it’s still early days for me and it will take time to get back to some kind of normality. Maybe I’m too impatient, I don’t know.
I think we can all be a little impatient and of course you want to get back to some kind of normality and you will get there. It just might take little bit longer than you’d like. I used the service below. Worked well for me. Please keep us updated on how you are doing x
Hi @Janice1 Perhaps most of us are ‘impatient patients’, but unfortunately I have found a lot of waiting around and not knowing, it is horrible.
Be very kind to yourself and please do keep posting
Hi @Janice1, as others have said your thoughts are entirely understandable.
I’m also just coming to the end of my fourth round of treatment for Acute myeloid leukaemia (AML) and it has been going well but I’ve not quite got to negative in the MRD test, so my doctors reckon a stem cell transplant is the best route for me. This is due to go ahead next month.
Your situation seems really positive, as it sounds like your treatment has been successful enough for the doctors to think there is a high enough chance for you to be cured without the need for a transplant.
I completely understand your feeling of anxiety and I’m sure I’d be the same (and I will likely also feel the same after my transplant).
You might end up being cured for good, as happens with a lot of people through chemo alone, which would be amazing. But if it does come back it’s great that you would then have the option of a transplant.
I think as Acute myeloid leukaemia (AML) patients we’re all on a journey and should try our best to celebrate the good news, enjoy the good days, and then, if setbacks do come our way, have faith in our doctors that they will find the best treatment response and that better days will be ahead.
Also I wonder if there is any option for you to ask for more regular blood tests, from either your hospital or GP? I feel that might help give some reassurance in between those three monthly bone marrow tests.
Thanks to everyone for your supportive messages. I will contact MacMillan regarding the counselling sessions. Mike, I’m wishing you well for your transplant and thank you for your positive words. Yes, we are all on a journey - a very hard one! You never expect life to be turned upside down. Thanks again.
Hi @MikeB thanks for updating us on what is going on for you.
Perhaps the thought of your transplant getting nearer and more real will bring up lots of mixed emotions, thoughts and practicalities, it would for me, we are here for you.
Yes, you really do talk sense and I really believe in having gratitude and celebrating the good news and good days.
Please do keep posting and being kind to yourself
Hi all, thanks again for all your supportive messages. I have been put on diazepam to stop my panic attacks which is a short term fix but also an anti depressant. I’m hoping this will help as I feel I’m being such a burden to my family with all my low moods and feelings. I’ve also been referred to a psychologist.
I will hopefully feel better through time.
In the meantime I wish everyone courage and strength with what they are going through.
Oh @Janice1 I am so glad that you have sought and are receiving some help.
Yes, give it time
Don’t forget the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep us posted how you are doing and be very kind to yourself.