Caring for a partner with ET, MF and a meningioma

Hi everyone,

I am new here and glad to have come across this great resource.

Caring for my husband is challenging and stressful for me at times because I have long thought that he shows many characteristics of autism and ADHD. He has never been comfortable with accepting the possibility that he has these neurodevelopmental disorders so has never pursued having a decent assessment carried out nor addressing the recurring relationship difficulties (as identified by me) in an engaged and sustained way. I have largely given up hoping that he will work individually and with me on change of any sort and have accepted the limitations for the most part.

Fortunately, the meningioma has not grown in size since my husband was diagnosed a number of years ago and it appears to be causing very little trouble. Long may that remain so. I can't forget, however, a neurologist's comment in a report that it is compressing part of his brainstem. This is worrying for me (could it affect his breathing?) but my worry about this issue is relatively low-key just now.

At around the same time that the (benign) meningioma was detected, my husband was diagnosed with essential thrombocytosis. After the initial distress of discovery, investigations and starting treatment, living with this condition in the mix has not been particularly difficult until recently. During the last few months, there has been a lot of instability and worry regarding blood platelets, haemaglobin and white and red blood cells/severe anaemia/medication changes and now he has a new diagnosis of myelofibrosis and new medication. I don't know if this condition of MF is primary or secondary.

I have a number of questions lined up to ask my husband's specialist nurse regarding COVID-19, when I should try to obtain emergency medical attention and care if my husband is unable or unwilling to do so for himself (e.g. if he becomes very breathless again and our home oximeter gives consistently concerning figures) and other topics.

In the meantime, it is a relief to know that I can turn to Macmillan for supplementary information and guidance and that I can reach out to this and other online support communities under Macmillan's umbrella from time to time in order to offload a bit. Even typing this just now helps to ease the strain. It is such a relief not to feel alone!

  • Hi again  and a warm welcome across to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have this type of blood cancer but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand the challenges of this journey well.

    I am not in any way medically trained but I would think that the MF has nothing to do with his meningioma. When it comes to his risk from COVID - if he tests positive on an LFT test he calls 119 and reports this and the system will assess if he requires any of the new treatments. I tested positive a few months ago and I did not required any meds.

    Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    Always around to help more or just to chat

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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