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Disability and cancer

tomato_soz Community member Posts: 18 Connected

Hi everyone

I'm wondering if anyone has any advice for me as a wheelchair user recently diagnosed with thyroid cancer. I'm having further tests. I only know about the one mass at the moment but my first symptoms were swollen lymph glands. I have hospital appointments every day this week and it's taken it's toll on me. My whole body hurts because I haven't been able to stick to a routine and rest. I have had to order a portable bladder bottle-thing as patient transport makes me late but there's no toilet I can use on the 3hr journey to hospital. I've got bladder disease so it's not possible to go otherwise.

I am worried about the constant scans as they struggle to get the contrast in me due to vascular problems my veins keep blowing out. I have another this week as they couldn't physically get the dye in me. I feel like these are things that people do not have to deal with if they were healthy before they get the diagnosis?

I've started to have some dark thoughts like what's the point? I have only come to terms with being disabled in the past year or so and this has set me back.

Whats upset me most is being dismissed about what is and isn't normal for me. My swallowing problems have got worse for months, which was Lawrence the Lump restricting my swallowing. Yet, when I mentioned it to my GP they just said that I have a diagnosis of dysphagia and I have management advice so there's not much more they can offer other than water thickener. I've already had all the puree diet advice and stuff from ENT. I do agree that there isn't anything they can do but maybe they should have investigated the nagging pain and worsening difficulty swallowing if I'm telling them that isn't normal and it has never been so bad? My disability masked my cancer symptoms and now I'm resentful towards my body.

The other unwanted thought I'm having is that the doctors don't care as much about curing me. Nothing any of them have done has confirmed that and I know that's me telling myself that.

Thanks for reading!


  • WhatThe
    WhatThe Community member, Scope Member Posts: 1,298 Disability Gamechanger
    edited June 17

    3hr journeys every day? Is there anywhere you could stay for the week?

    I'm sorry for your late diagnosis and hope you can get treatment and effective pain relief soon. Have you been offered radiotherapy to reduce the mass? Is there another GP surgery in your area who might support you a bit better than this one?

  • MW123
    MW123 Scope Member Posts: 633 Pioneering

    @tomato_soz Firstly welcome to Scope.

    I am deeply sorry to hear about your cancer diagnosis and was truly shocked to read your post. I also suffer from chronic cancer. I cannot imagine the added difficulty of a three-hour journey, especially as a wheelchair user.

    It seems unfair that you are expected to endure such a long trip without proper consideration. When I need tests, they are always arranged in advance, and I am admitted directly to the cancer ward. I only live twenty minutes from my local hospital and would not be expected to travel back and forth daily I remain in hospital until the tests are concluded.

    Please contact Macmillan Cancer Support as soon as possible; they may be able to provide assistance. Additionally, reach out to the Butterfly Thyroid Cancer Trust, the only UK charity dedicated to thyroid cancer, which can help answer any questions you have. Here is the link https://www.butterfly.org.uk/

    There are people and organisations ready to help you navigate through this difficult time. Stay strong, and don't hesitate to reach out for the support you need.

  • tomato_soz
    tomato_soz Community member Posts: 18 Connected

    Unfortunately not - I have children at school locally, and no car. The hospital is the second nearest after our local one. It's just that I live in a small town where public transport is abysmal. I have to get a bus into town, train into Manchester and then a tram out to hospital and still have a way to go from the stop. My local hospital isn't taking referrals and I wouldn't want to go there anyway. This has really made me think that I need to get a carer who can drive. My husband won't take his test. He helps me with everything but he won't drive and doesn't see how important it is.

  • tomato_soz
    tomato_soz Community member Posts: 18 Connected

    Thank you - I'll contact them today and see if there's anything I can do. Unfortunately the travel situation is something I'm used to. I live in a small town on the edge of greater Manchester. To get to any place outside of the city centre, I have ro travel via Manchester and out again. Sometimes in a triangle because there's no connections between us and the adjacent town. It's due to bus services being eroded over the years. Most of that 3hrs is sat waiting for my train once I've got the 2hrly bus into town. No taxis available as my wheelchair won't fold. They're all greedy sods too - I could book a minicab in advance but because its an advanced/contract booking, they know they can charge me more than the mileage. Standard into Manchester when I was working there was £100 a day there and back. This was 8yrs ago. My employer used to pay it but I can't afford that myself. I haven't even asked how much it is today! I don't know what else I can do other than ask someone to drive me but it means leaving my powerchair at home and I've got bad experiences of this.

  • Jimm_Scope
    Jimm_Scope Posts: 3,654 Disability Gamechanger

    hi @tomato_soz, first of all welcome to the community. I see you've already met some of our other community members 😊 I echo what they have said about contacting https://www.macmillan.org.uk/?_gl=1*1978qf7*_up*mq..&gclid=1cd7739a91791904a74f15eb1fb3d377&gclsrc=3p.ds . They are so helpful. I remember when my grandad got stomach cancer and they didn't just help him with things related to his cancer diagnosis, but also they managed to help him with benefits he should have been receiving even before he had cancer and more. I remember they did sort out transport for him to get to and from treatments when he needed the help.

    There is a lot of support out there, and you shouldn't have to do all this without support.

    Look out for an email from us later!

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