I was diagnosed with Acute myeloid leukaemia (AML) around 18 months ago and subsequently underwent treatment with Venetoclax and Azercitadine. As a result I eventually went in to a form of remission last March but sadly relapsed in August. I was seen by my consultant and told in blunt terms that there was no further treatment available and that I should “put my affairs in order quickly” . That was the extent of the advice and support I was given along with a plan to test blood every week, insert a picc line and have transfusion support.
My question is this: At the point of being given the bad news what if any advice and support should have been forthcoming from my consultant and others in the room? Or is it normal to be escorted out the door and to be left to my own devices?
I have now put in place various arrangements which I had to find out for myself; counselling, alternative therapies, contacts with a local hospice etc but is that normal? Could I have expected more support than I was given?
It sounds like it’s been a very challenging 18 months and I can only imagine how you felt/are feeling, being given that news without any support at all.
I have copied in the @BloodCancerUK_Nurses and also the link below for the helpline. It may be worth giving them a call and having a chat to see if they can support in any way.
It sounds like you have been really proactive putting things in place which is amazing. However, that must have been very difficult to do and taken its toll. I would have thought - and expected - that there should have been more in place for you.
How are you doing at the moment? Will you still be seeing your consultant for checkups/reviews?
So sorry to hear about your situation. It’s one that all of us with blood cancer dread.
Given the circumstances, I’m surprised that your haematology clinicians did not offer to refer you to the palliative care team at your local hospital. I know this is one of the many underfunded specialities in the NHS but my understanding is that they can be very helpful and it’s such a shame that you’ve had to find your own way through.
Not sure if it will help but Myelodysplastic syndrome (MDS) UK have a very good speaker coming up this month - talking about the emotional impact of a difficult diagnosis. I appreciate you already have counselling arranged but a little extra insight and tips for coping might be useful?
I have requested a face to face meeting with my consultant but as yet no reply
Nothing in terms of care has been automatic since my diagnosis. I have had to advocate for myself
I’m so sorry that you’re having to advocate for yourself in such difficult circumstances. You have enough to deal with. Unfortunately it seems this is how the NHS works these days. Apparently GPs are not even “allowed” to pre-book appointments to follow up patients under the e-consult total triage system! I worry for the people who cannot advocate for themselves.
Just wondered if your GP could refer you to palliative care services?
It’s ok now have made my own links with local hospice cancer wellbeing centre and local GP services etc
When I was under treatment care was very good now it isn’t
System seems to ghost people like me
But thanks for your suggestion
I am listed for a phase one trial at Guys so hopeful of better care there
I am so sorry to hear about your relapsed Acute myeloid leukaemia (AML) and to read about the lack of support you are receiving when you need it most.
Please know we are all here to support you. The nurses would be very happy to talk this through with you in more detail on 0808 2080 888@Nichola75 has kindly linked in our information and opening times. We can discuss what support is available to you and help to signpost you in the right direction.
Do you you have a Clinical Nurse Specialist? where possible they should have been with you and your consultant and provided you with extra advice and support you need after your meeting. They should still be supporting you going forward alongside any other support you have put in place.
So sorry to hear about your diagnosis and how little support you have received. This was our family experience also, it’s deeply disappointing. I would educate yourself on reasons for needing to contact your hospital (symptoms) and contact them if you have any queries at all, do not worry about creating work for people.
It sounds like you are doing a great job of advocating yourself. Definitely get in touch with the blood cancer UK nurses- they are so helpful and kind.