My mum has CMML and just had regular blood tests since she was diagnosed in 2006 until this year when her platelets and haemoglobin dropped.
She was getting transfusions but these have now been stopped (long and complicated story) and she was put on Amber end of life in hospital a few weeks ago and we brought her home to care for her.
Because of the covid situation we haven’t been able to have any proper discussions with haematology doctors so have no idea what to expect.
Can anyone point me in the direction of some information? Forewarned is forearmed and all that.
Hi @Ellen, that sounds like a really difficult situation. I like to know everything to feel a lot more in control so I get the need for you to need for you to have that information to.
Firstly, I would suggest giving the Blood Cancer Support line a ring. They will be able to help so much.
Does your mum have a clinical nurse specialist. I wondered if it might be worth giving them a call. Mine is great but I know some people are not as lucky. If not, perhaps the patient liaison service could support you in organising a discussion with your mums team?
Please let us know how you get on. I can imagine you will feel so much better when you can have some of your questions answered and get the information you need to help you manage the next few weeks in the best way that you can.
Please keep us updated. Sending lots of love X
Hi @Ellen. @Nichola75 has given you some really good advice and help.
It must be such a difficult time for you and I would feel quite abandoned by my mum’s medical team, covid or no covid.
Your emotions, thoughts and feelings must be all over the place.
Yes, I would say I, or my mum, would really want to talk to the medical team. I am a great one for writing down everything I want to ask first, this might include medical and practical questions, fears etc and don’t be afraid to keep asking follow up questions too. The only other thought I have is whether your mums hospital has a Macmillan centre, or equivalent, there.
We are always here to support you and please let us know how you both are getting on.
@Ellen I’m so sorry to hear of this tough time you’re going through. Please do feel free to give us a call on 0808 2080 888 if you want to talk things through. Don’t be afraid to be persistent in calling the haematology department, to see if you can talk to her consultant or clinical nurse specialist. It must be difficult not having had a proper discussion with them and not feeling informed about what the next steps might look like. Ellen you might find Leukaemia Care’s CMML booklet helpful as from page 35 it talks generally about palliative care for CMML , but also, about end of life care. Marie Curie also have a lot of information around caring for others towards the end of their life, the practicalities of it etc.
If you want to talk through anything with us please do give us a call, we’re only a phone call or an email away. Just in case it can be helpful, we have this page called ‘Mind and Emotions’ which talks through some small things people can do to help them cope through challenging times. There might be some information on there that might be useful.
Take care, Alice
Thank you all for replying and the really helpful advice.
We were told Mum was essentially discharged with no follow up planned but I did call the GP out last week for a few things and raised it with her and she agreed we needed a conversation with haematology as we had had so little info and the clinical picture has changed with mum doing much better out of hospital.
I have had a call back from her this morning and haematology have agreed to another consultation!
It might not change the picture but at least we will have some understanding.
Going to take the advice to write a list of questions and take it with us and in the meantime read up on some of the other links you lovely lot have provided.
Hi @Ellen, phew, that really is great news and will hopefully put your mind at rest. Yes, get writing and don’t let them put the phone down until you’ve asked everything you want and need to. Please let us know how you get on. Lots of love X
Thank you. I will call the helpline. I am definitely a person who needs information to process and be prepared so feeling like we are in the dark is horrid.
Mum is under the District nurse and GP so no clinical nurse specialist sadly.
As reported below GP has now told us we will get a haematology follow up so just waiting for the letter to tellbisnwhen that appt will be.
Abandoned is the right word for how I am (was) feeling.
Macmillan were involved in palliative conversation and getting mum home but seem to have signed off now but I will go back to them if I don’t get anywhere with the other suggestions.
Oh @Ellen please do let us know how you get on and yes, sometimes we do have to stand our ground and make sure we are getting answers and the help and support we are entitled to.
I hope the haematology follow up appointment comes soon, although it can often feel an age to us.
I have found that the Blood Cancer UK support line is wonderful and we are all here for you and your mum. take lots of care of yourselves and spoil yourselves a bit.
Update: my sister went to the consultation with my mum. The first panic was mum’s haemoglobin was down to 41 though platelets had improved in the absence of treatment. They wanted to admit mum but she refused and was given a unit transfusion on the day unit and had another 5 or 6 units since then and a follow up haematology consultation so a lot has happened.
1st consultant (cos you never see the same one twice) was very surprised by how well mum presented given her blood results and the hospital discharge letter. He wanted to get her Hb up and was talking about a bone marrow biopsy.
2nd consultant: very abrupt and unwilling to answer questions, assumed we understood medical terms we had never heard before. Didn’t even raise option of biopsy and initially told us it was pointless because mum wouldn’t be well enough for the treatment. Later seemed to say might be worthwhile to see if there is any marrow fibrosis but said we should wait and see at the next appt in 2 weeks. It felt like she was assessing the patient the hospital discharged not my mum sat in front of her.
Feels like we are no further forward. Mum’s Hb is creeping up slowly but now her platelets seem to be falling and latest blood results (requested from nurse on transfusion unit) show high creatinine and ferritin of 2600, which to a layperson seems a bit high on a “normal” range of 12 - 233.
One of the haematology nurses is supposed to give us a call tomorrow to arrange the next transfusion dates so I will ask what it all means. Don’t really expect any answers though.
Hi @Ellen. Good to hear from you and to get an update. Gosh, it all sounds really full on and an awful lot to take in - or not take in because of all the new medical jargon and terminology!
I find the nurses really helpful so I’m hoping they will be able to answer some of your questions today.
Please let us know how you get on.
How is your mum coping?
Hi @Ellen you, your sister and your mum must be absolutely exhausted with all the appointments, tests, transfusions and seeing consultants speaking foreign jargon etc.
Please let us know how it goes with the haematology nurse.
I have found I have to keep questioning medical people till I understand what they are saying and why. Consultations are a two or three way thing.
How are you all doing?
