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Newly diagnosed - how do I tell my family and what support is out there?

Supergran123
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Yesterday I went for what I thought was the usual report back on my hearing tests at the ENT  centre of my local hospital. I was in for a shock.  The specialist explained that he thought the deafness in my left ear was due to a blockage in the eustachian tube, and wanted to run a camera up my nostril to check. This he duly did, then stepped back and said " You have a tumour ". He then arranged for a CT scan in a fortnight's time to assess the size of the tumour, prior to treatment. That was it. No support, just turned me loose. Being the retired academic that I am, I looked it up on the Internet. Nasopharangyal tumors are apparently quite rare, not susceptible to surgery, so I can look forward to radiotherapy and chemo in the near future, with all the delights they bring.

How the hell do I tell my family? I have respite care for my two youngest grandchildren at weekends, following the death of my youngest daughter to leukaemia 7 years ago. What if I am too sick to support them? Their Dad's mental health is already teetering on the edge. It's a mess. What help is out there?

  • Welcome to the forum, Supergran123 although I'm sorry to hear about the reason that brings you here.

    It's completely understandable that you're feeling overwhelmed and uncertain about how to move forward, especially considering your family circumstances.

    While I can't offer medical advice, I want you to know that you're not alone in facing this challenge, there are many here who will understand how you're feeling and what you're going through at the moment, hopefully some of them will come along shortly with words of advice and support.

    In terms of supporting your grandchildren, it's important to prioritise your own health and well-being while also considering their needs. You may want to explore options for additional support, such as respite care services or assistance from other family members or friends.

    There are various organisations and support groups available that provide assistance and guidance to individuals facing similar situations. Your healthcare provider or local community resources may be able to provide information on these services. We too have a page on our website with advice on what you can do to help yourself while navigating these difficult times.

    I hope this helps a little.

    Last but not least, please remember we're always around for when you need a chat.

    All the best,

    Renata, Cancer Chat Moderator

  • Offline in reply to Moderator Renata

    Thanks,  Renata. Just knowing there is someone listening helps. Unfortunately the family is rather scattered, and I am usually the support for the youngest grandchildren, who lost their Mum to leukaemia. Littlest granddaughter was 1 at the time, and autistic grandson was 5. We moved house to be near enough to provide respite care, since we don't drive. So far, my husband has retreated behind his usual stoic facade, and is leaving it up to me to organise everything - standard operating procedure for our household. Hopefully, will get more help once we have a treatment plan in place, but at the moment I am in that limbo land between diagnosis and prognosis.

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    Hi Supergran,

    Tell them exactly what you’ve posted here, emphasise that you haven’t been diagnosed yet but that you are very worried. Please do it quickly, the longer you leave it the harder it will be.

    I know from experience with my own autistic son how slowly social services respond to anything. Once your immediate family have been told, I’d inform social services (presumably a social worker has been appointed) to get the ball rolling for enhanced support should that be needed.

    Whatever you do, you need to look after yourself over the coming weeks or months. 

    Good luck with your CT scan and results.
    dave

  • Offline in reply to davek

    Thanks, Dave. I am working through telling the family, starting with the closest and working outward. The littlest grandchildren took it rather well. Granddaughter giggled at the idea of Granny with no eyebrows (she's  8), and autistic grandson has been giving me facts about the structure of cancer cells - it's the way his mind works, hyperfocus on detail. Tomorrow I am getting my long hair cut, as a positive step, so that we don't have clumps of long grey hair all over the place once chemo kicks in. I needed to feel that I had a modicum of control. I am hoping that once the tumour is dealt with, I might regain hearing in my left ear, and possibly even a little of my girlish figure if yhe stuff puts me off my food, so there is that.

    Social services have yet to be of any help at all since the death of my daughter 7 years ago, so I am not confident they will step up now.

    Regards,

    Anne

  • Offline in reply to Supergran123

    Hi Anne,

    It sounds lke you’ve made a good start.
    Your description of your grandson’s research into cancer cells sounded so familiar that it made me smile. 

    In my experience, telling your family is a massive milestone. Once it’s out there, it is no more real than it was before … but it does feel far more real. 

    Before I started chemo I was warned that I’d probably lose every hair on my body. So, I did a pre-emptive strike - a number 2 crew cut.

    Against all the odds, apart from some thinning, I didn’t actually lose any hair!

    The effects of chemo are nothing, if not unpredictable. That said, I’m not complaining. In 2013 I was put on palliative chemo to help extend my life! 

    Good luck!
    Dave

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