Single myeloma mum with a disabled, autistic teen.

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Hi, how is it going today? Today for me is utterly crap.  I am on an intensive treatment, and loathe Thursdays, as I have to travel almost two hours for my treatment, then another couple back. I'm feeling weaker every day, like hit by a truck weaker, but everything is piling on top of me now. I have to have two dental extractions asap, and my stemcell transplant is due end of May.

I have a daughter, she has her own health issues, and will be turning eighteen very soon, and mentally she is more like a fourteen year old, younger even. She goes to college, we get child tax credits, disability benefits etc.  Everything is happening all at once, at the one time in my life I feel like I can't cope. I need to sort out what will be happening to her after she finishes this course. She's missed a deadline to apply for another, even though the college assured me they'd help us along the way. She wants a gap year, citing her mental health. I understand this. It's not every day you are told your mum has incurable cancer.  I have to work out the tax credits, child benefit, child trust fund, a new course, apprenticeship or job...oh and she is half American, so stuff that side of the pond.

We don't have money, like a lot of people don't. I won't have anything to give her when I die as life insurance was never an option as I have had health issues since childhood. I'm scared for her future. She isn't ready for adulting, and the organisations here that are meant to help are rubbish, and let her down so many times. The only reason I live is for her, if she wasn't here, I wouldn't be either. Her father isn't in the picture and lives overseas.

Before the myeloma, around five years back I was diagnosed with a pituitary macroadenoma. Went through the neurosurgery, radiation etc. and a couple of years before that, I had a breast lump removal. I've got over a dozen health conditions without counting the cancer.  Ever feel like you were just made wrong? like you shouldn't have been born?

I am in panic mode, at a time where my body wants to throw up, sleep and crawl everywhere. I have asked for miracles, prayed for a distant rich relative to suddenly show up and reassure me that my kid will be looked after. It won't happen.

I feel like we are completely and utterly screwed, all I want is for it to be easier, to know she is going to be ok.

Rant over.

  • Hi GroguLove, I share and understand most of what you say and often wonder why we get so many health conditions, have loads myself from day i was born, and as for worrying about the kids when i am not here, they are the reason for all my crap days and the reason i will try to be here for as long as i can. If i were you i would get the college to keep their word. Both my girls had gap years and i know they don't have your daughters issues, but they did a lot of growing up that year, hopefully your daughters gap year will help her, sending you hugs.

    Eddie

  • Hi  

    I'm very sorry to read of all that is going on for you right now. I think you need some help in trying to sort these things out. It may be worthwhile in seeing your GP and asking for a referral to a social worker. They may be able to ease your worries for your daughter by looking into the care she may need if your health deteriorates. I would also recommend giving the helpline a call. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us

    They can give you advice and support but also signpost you to the people who can help with your situation. It may be worth writing everything down and making a plan for yourself. It can help to get the thoughts out of your head and onto the page. This will help you feel a bit less overwhelmed when you are feeling low and exhausted by the treatment. You can then work through the to-do list at times when you feel a little stronger. I hope you find the help you need, best regards.

    A x

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