Caring for a partner who has a skull-based meningioma and a new diagnosis of myelofibrosis (cancer of bone marrow)

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Hi everyone,

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

Caring for my husband is extra challenging and stressful for me at times because I have long believed that he also 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 with it a number of years ago and it appears to be causing very little trouble. Long may that remain the case. I cannot 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 the worry is a low-key, background issue.

At around the same time that the (benign) meningioma was detected, my husband was diagnosed with essential thrombocytosis, a form of blood cancer. After the initial distress of discovery, investigations and starting treatment, iving with this has not been particularly difficult for either of us until recently. During the last few months, there has been a lot of instability regarding blood platelets and white and red blood cells and now he has a new diagnosis of myelofibrosis, a form of bone marrow cancer.

It is good to know that I can reach out to you from time to time to offload a bit. Even typing this just now is helping to ease the strain.

Thanks for reading!

  • Hi Apricots

    a warm welcome to the group. Glad its helped you to reach out. Sounds as though you have sucb a lot going on.

    This is a safe supportive space so please reach out anytime. There's always someone around who gets it, someone to listen, someone to hold your hand or offer that virtual hug when its needed.

    Personally I've drawn a lot of support from this group and  Carers only forum - Macmillan Online Community as I support my husband on his stage 4 glioblastoma journey. It's been a real roller coaster ride so far and knowing these groups are here really does help.

    It’s always good to talk so please remember you can also call 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 provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Sending you a huge virtual hug. Hang in there.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much, Wee Me

    A big virtual hug from me to you too!

    xx