Refused treatment

Hello I didn’t want to read this and not give a word of support. I had AML leukaemia in 2019 aged 35 and am now in remission.

Obviously I am not a medical staff so I would not know the details of your mum’s case, but from experience, the first few days of diagnosis can be a blur. They can make a guess at the diagnosis by the blood test/ symptoms, but may need a bone marrow test to confirm it, and also to know the specific type of leukaemia they are dealing with. Certain types are more aggressive, and treatments are tailored to the individual’s type, age, health etc. So yes, from my own experience the first few days things went very quickly with tests and being told what to expect. My husband sometimes had trouble speaking to the doc/ nurses as well, as often I would be rushed to scans/ ward gets very busy.

As to the treatment, chemotherapy is brutal even to a patient of healthy weight. Most people would lose weight due to nausea/ change in taste and treatment in general, so if your mum is already very underweight she might not be able to withstand treatment. If you think the hospital has acted in an inappropriate manner, then perhaps going to Macmillan or the hospital’s Maggie Centre may be able to help.

I was also told by a nurse during my initial time at the hospital that, because chemo is so brutal to the body, they will not get people to go through it unless they think necessary. 

Sorry this is poor advice. 

Hi Wednesday5 and a sorry welcome to the Macmillan Online Community and especially sorry to hear about your mum’s sudden diagnosis.

I am Mike Thehighlander and I help out around our blood cancer groups, although I was diagnosed way back in 1999 with a rare incurable type of Non Hodgkin’s Lymphoma, from talking with others in these groups your mum’s sudden diagnosis and prognosis is unfortunately not that unusual. The communication with the medical professionals is another matter completely.

AML can in some cases be present for a long time and often only found due to seemingly other medical issues. Very often the treatments that used to get AML under control are very very strong and there is a balance with regards effectiveness and quality of life.

There is always the option about getting a second opinion but you do need to understand more about what is going on so do keep pushing the system, you may find calling the Macmillan Support Services on 0808 808 00 00 (most services are open 8am to 8pm, 7 days a week)

Clicking here to see what is available. This service can give lots of information, support, financial guidance or just a listening ear.

We also have our Ask an Expert section where you can post questions to our team including our Nurse Team but do allow two working days for replies from our expert team.

When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Carers only and supporting someone with incurable cancer group groups as you will connect with others supporting family and friends through their cancer journey.

To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.

You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'. 

((hugs))

Thank you for writing and your help. The biggest problem is how little communication we've had with hospitals or anyone, so been left very underinformed. Am very thankful bfor any advice given. X

Thank you for your information, it's gonna be very helpful. I just want what's best, but feel I cannot help provide without a bit more information. Thank you for your help. X

I know how you feel. My wife was diagnosed 6 weeks ago it was very sudden. She had some bruises and contacted the doctor had bloods taken and was in hospital that day. She is refusing treatment apart from the transfusions. Jan is 68 and was healthy, even now you wouldn't think there was anything wrong with her. She is at home and goes to the hospital once every two weeks for transfusion. I do not know how long this will last. Sorry I cannot give you any advice our world has been turned upside down. 

Hi so sorry I’ve only just joined this forum and read your post.  My mum too has been diagnosed with Leukemia. It has all been a total rollercoaster of miscommunications, infected pic lines, sepsis, broken back not  to mention the infections caused by chemo. Your mum is only 65 mine is 73. Having said that the Haematology nurses assigned to her have been brilliant! Doctors not so much and have a less than desirable bedside manner!  I would bang on every door necessary to get treatment for my mum…. I know during Covid it has been hard for everyone and getting in front of any professional near on impossible but everyone deserves to get the treatment they need.  You will need lots of support too,  none of this is easy. Keep going

Hello Mike, is there a group for MDS EB? 

Hi Malfi and welcome to the community.

At this point in time we don’t have a dedicated group for some of the new classified blood cancers like MDS (I am doing my best to get one set up) but there are a number of folks with MDS hang out in our Other cancers group so follow the link, join the group and put up a post or have a look through the MDS posts and hit reply to see if the folks are looking in.

But I am always around to chat or help out as best as I can.