Hey, I’ve just joined this forum as I am waiting for counselling at the moment.
I’ve just completed my 3rd cycle and have been in remission since round 1 of chemotherapy (DA+Mylotarg)) I am awaiting the results for this bone marrow to confirm whether I need a 4th cycle or not…here’s why…
Cycle 1 - I had a chest infection, kidney infections and I had also got appendicitis requiring urgent appendectomy with my platelets at 0. - (platelets you will see is my common denominator)
Somehow I managed to get through the surgery and after 5 weeks was allowed home and was told I was less than 5% blasts therefore in remission.
Cycle 2 - again, platelets would not increase despite having HLA matched platelets every day. I suffered minor infections and managed to get an even better result from the bone marrow biopsy, which confirmed I was deeper into remission, showing 0 blasts in my bone marrow.
Cycle 3, the one I have just completed.
This I think mentally has been the worst and taken it’s toll on my physically, mentally and any other way possible.
Platelets being the culprit again & an inexperienced nurse giving me ibuprofen meaning clotting was even harder, I was diagnosed with a pulmonary embolism and neutropenic sepsis causing me to stay in ITU for 10 days. My family were told to expect the worst as it was likely I’d be sedated and put onto a ventilator. Thank goodness I managed to pull through without needing the ventilator (not that this was easy at all)
However during my time in ITU, I almost bled out due to the nurse leaving me after removing a catheter whilst sleeping.:I woke up in a pool of my own blood and need urgent blood transfusions.
Ever since, I have spent every night unable to sleep as I have nightmares and when I do, I just scream out for my son and lose baring on where I am.
I have now returned home, being monitored at the hospital most days. I feel detached, I can’t settle into being at home, I find everything overwhelming or overstimulating and I just feel awful that I feel this way when I know I am lucky to be alive.
Someone please tell me if they’ve been through similar as I just feel exhausted and alone.
I should mention I already have previous diagnosis of PTSD, Anxiety, EUPD/BPD and FND.
I just feel like I’m going round and round in circles between mental and physical health issues.
Hi @ljh26,
A very warm welcome to our forum. I do hope you are doing okay today?
In reading all that you have been through recently, it is completely understandable that you will be feeling a variety of fears and emotions from everything you have been through during your admission. You have been powerless through some very traumatic events.
I think anyone going through this would feel complete overwhelm also.
Can i ask, are you receiving support from your haematology team at all and do you have existing contact with a mental health team? It would be great to let anyone involved your care know exactly how much this is impacting you.
Whilst it’s great to know that you will be receiving counselling please do know that should you at any point wish like to talk things through with us, we are very much here for you in the meantime- 0808 2080 888.
I hear you and see you
I was diagnosed with PTSD while in counselling due to a life threatening event my diagnosis
I had weekly sessions for 12 months and then every couple weeks until I could cope without them. I would cry at the thought of not being able to go to sessions and my counsellor was lovely and said I would know when the time was right
I think I struggle/d with separation anxiety stemming from my childhood
I also went to a drop in mindfullness class at my local hospice at the time and the wonderful lady realised I needed one to one help.
Together helped me greatly
I’m a single parent and it took all my courage to ask for help from my haematology consultant who booked me for counselling asap in 2018
I didn’t know where I belonged I had gone from a whirlwind diagnosis straight to treatment I was ill through most of it and my stem cell transplant and suddenly there was no more hospital visits as they had been and I felt scared and unsafe
After the noise of the hospital the silence at home was deafening and the darkness seemed to have sounds that I never noticed before
I still do mindfullness via zoom I also do yoga and meditation and keep fit
I also have the best brother who calls me everyday who has been an amazing support
Hi @ljh26 a great big welcome you are now part of our forum family.
Gosh what a time you have been through, thanks for being brave enough to tell us and I was so glad that you had taken the big step of counselling, it really helped me.
That feeling of going round and round in circles between mental and physical issues reminded me of being on an out of control rollercoaster. @LauranBloodCancerUK has also given you the Blood Cancer UK support line and I have found them to be so helpful too.
Never apologise for the length of your post, I find it therapeutic to write things down on here.
Be ever so kind to yourself you have been through a lot.
Look after yourself and please do keep posting
Thank you for responding it’s really appreciated. I have had counselling for years and as soon as I got my cancer diagnosis my MHN basically wrote me off and said she has no experience in this and that was that. So now after 4 months I’m really out to specialists with the help of the haematology unit for some counselling.
I have a lot of support around me, yet find it somehow harder because they just cannot
Understand why I’d feel depressed when getting great results. I guess it’s hard to see the full picture for them.
Hopefully counselling will help.
Thank you so much for sharing your story. I could not imagine what you’ve been going through as a single mum. I have a partner and it’s still extremely hard.
Sending you my best wishes too x
I hope you feel somewhat better being able to share everything you’re going through. I can see others have already provided some fantastic reassurance and do know we are very much here for you. If it ever feels easier we can also arrange a scheduled call to talk with one of our nurses so do just bear that in mind.
Welcome to this really supportive forum. You have been very brave in sharing your thoughts and please remember, you have fought a phenomenal battle to get where you are today. It is no wonder your thoughts are all over the place.
Well done for reaching out for support at this point. The cycles of chemo certainly have a cumulative impact and both physical and mental health.
I am Mum to a 20 year old daughter who was diagnosed with acute myeloid leukaemia in April this year. It has proved a challenging 6 months for both of us. We both found support (with the help of her Haematology team) at the MacMillan centre that is part of her hospital. Maybe there is something similar at your local hospital?
