Hey all, i was diagnosed with Acute myeloid leukaemia (AML) on 19th January 2023, I went in to complete remission after my second round of chemotherapy and targeted therapy for the FLT3 mutation. However, on the final chemo day of round 3 i suffered severe heart failure. I then couldn’t have any further chemo or targeted therapy and my planned Stem cell transplant was cancelled because i wouldn’t survive it, because of the heart failure. Mentally I coped really well throughout the diagnosis, treatment and afterwards. I had never shed a tear until this week, 20 months since diagnosis, and now i’m an emotional wreck. I think i’ve been so strong for so long, I’ve finally broken. I know my odds for 5 year survival from diagnosis aren’t good in my case, but i don’t understand why the trauma of what has been and what may come is hitting me now. However, I have started writing my story as Facebook posts which is helping me make sense of it all and I’m organising a fundraiser for Blood Cancer Uk, to give me a focus. Has anyone else had a delayed mental response to the illness and treatment or am I just weird 
? Many thanks.
Hi @Tina13 I am so glad you have found us and you are now part of our forum family.
I am so sorry that you now feel broken.
Personally, this is not a medical reply, I think that you have hit the nail on the head yourself,
I definitely relate to to your experience.
I keep going and keep going whilst a situation is going on and then after the situation has calmed down the emotional side comes up and hits me.
You have been through a lot, don’t underestimate it, and it is bound to hit you afterwards.
I have seen this often happen to family members and carers when their role winds down.
Perhaps you might consider seeing your GP for support, I personally benefitted from some talking therapy.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I find that I can be really honest on our forum and say how it really is for me, I hope it can help you too.
Be ever so kind to yourself, I do not think that you are weird, and just really spoil yourself and please do keep posting as I look forward to hearing more from you.
Thank you for your response, it is really helpful. X
Hello there @Tina13
Thank you so much for posting so honestly about how you are feeling and for supporting a charity through your fundraiser.
Firstly, you are not weird at all. Your response is not unusual, particularly you having been through the intensive treatment for Acute myeloid leukaemia (AML) and the severe side effects you mentioned. Often people who have acute leukaemia’s have a need for more emotional or psychological support after their treatment has completed. At diagnosis and through treatment, there is often a fight/flight response and then months after the need to talk is evident.
May I ask whether you have told the Medical team or your Clinical Nurse Specialist about how you are feeling? There may be hospital based support or counselling services that you can be referred into? I would recommend you do let them know as this is an important part of your recovery and monitoring.
If you would like to talk to one of the Nurses here, we would be happy to listen and hopeful be able to signpost you to support closer to home: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care
Gemma
Thank you for your reply. I don’t have much contact with my medical team now. The biopsies are now being done by a new kind of blood test and my consultations are now virtual. However, I could call them to ask. I am finding peace though writing and sharing my story in which I’m very open and honest. It’s like I’m going through it all over again but dealing with my emotions differently this time. I’ve actcried several times now, which is what I needed. X
Hi there
Yes I had a delayed mental response to my myeloma
I was diagnosed and a whirlwind of chemos and transplant appointments galore then I found myself with less appointments and not knowing where I belonged
I missed the safety of hospital and consultant appointments.
I finally told my consultant I needed help and she referred me to a clinical physiologist straight away.
I was diagnosed with a form of PTSD due to a life changing illness
I thought I was going to die through my transplant.
It took a lot to ask for help as a single mum I have put a smile on my face and no one would hand known I was struggling a smiled it away with I’m fine
@GemmaBloodCancerUK
I believe there is a need for physiological support when treatment is finished
There isn’t any unless you ask for help and I think all patients should have this support after treatment finishes
It takes a toll mentally afterwards
I hope you are now ok. I’m finding that writing my story up is really helping me. I know what you about the slowing down of appointments though, I felt really isolated although I was surrounded by people that love me. X
Hi
I’m doing well thank you 
I had counselling in 2018 for around 18 months I also accessed help at our local hospice after attending a mindfullness session I also accessed their alternative therapies, reflexology
I also used a local charity that offers complimentary therapies for cancer patients
Attending appointments and my cancer unit I felt like I could be myself and felt part of a community
Like you say we have our loved ones who are amazing but we also need those who know what we are living with and experiences similar.
When that safety net is gone it’s scary I didn’t feel safe I was scared of germs and getting sick.
My cancer is relapse/remit and I have since relapsed had 2nd line treatment and stem cell transplant
I did cope better I did access counselling pre transplant and haven’t since although I do still do all the above
Sounds like you’ve been through a lot, keep strong.
I think your amazing keep going
Thank you for sharing @Tina13. I think it takes courage to share like you have and welcome to this forum. I hope you are already finding it a safe and supportive space. I have a different blood cancer - myelofibrosis - but as others have said I identify with coping quite well when I am a crisis phase and then the reality of it all hitting me later. I have an excellent therapist who explained it to me that we can sort of dissociate from what’s going on as a way of coping to get through the immediate crisis. It’s the body’s way of coping and as I said it can hit us further down the line. You are certainly not weird. It’s so good that you are writing your story. I write a lot of poems and also journal a lot. I find it very helpful to express how I am feeling and if I am brave enough to let others read my poems I have found it helps them too. Warm wishes, Willow x
Thank you for sharing your experience, it’s helpful to know itnormal
Oh, I really appreciate your poems @Willow
How are you feeling and doing and I wonder which of the phases above you are in.
Be ever so kind to yourself. xxx
Thank you @Erica. I think the events of this year - fracturing my knee cap, losing my dear mother, fracturing five ribs and the associated lung infection (which is still present) has caught up with me! 28 August would have been my mother’s birthday and all the symptoms of my lung infection worsened over the Bank Holiday weekend and so it was on her birthday that my CNS asked me to come to the hospital for tests. I was there for hours with the possibility of having to be admitted but in the end I came home with my sixth course of antibiotics! I don’t know if this makes sense but obviously I was suddenly and unexpectedly admitted to hospital for my knee cap fracture and the broken ribs and so the threat of it happening again on what would have been my mother’s birthday has brought back a lot of the traumatic memories of the other hospital admissions. Fortunately I have an excellent Therapist who is helping me but I couldn’t understand why I coped quite well when I was in hospital but am really struggling now? She helped by explaining we can dissociate when at the height of the crisis as a form of protection and it is okay for the reality to hit later on. Rather disconcerting though! Hope you are doing okay @Erica. Thank you for your support and understanding. Warm wishes Willow x
You really have had a horrendous year and your therapist certainly does sound excellent, what would we do without them and unfortunately antibiotics.
I have had an ‘interesting’ year and the NHS have been brilliant, I had so many tests and appointments and lots of different conditions discovered, but luckily all on ‘active monitoring’ and controlled with medications.
@Willow you are a very beloved, valued and very supportive member of our forum.
xx