Iris melanoma

FormerMember
FormerMember
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  • 6 subscribers
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Hi everyone, I was diagnosed in January with an iris melanoma and am currently having proton beam therapy. 
I have had a mix of emotions from being upset , anxious , scared and nervous about what this means for me and my family and if I should have the treatment or not , hence i decided to have treatment.

I found that I was upset hearing the diagnosis but then had to deal with my family’s emotions as well and I’ve never heard of this melanoma of the iris before. I also started to feel like a fraud as I’m not unwell like others with cancer .

A friend said that there is support for people with cancer to help with cost of travel and prescriptions and if having time off work. However there doesn’t seem to be much information on this for eye cancers , does anyone else have information about this thanks .

  • Hi and a very warm welcome to the online community

    Feeling anxious and scared is perfectly normal when you discover that you have a cancer diagnosis. I remember feeling completely numb when I was told 4 years ago that what I thought was an odd lesion on my arm was, in fact, malignant melanoma. 

    It must make it doubly hard for you if you're trying to support your family to come to terms with your diagnosis as well as coming to terms with it yourself. If they are struggling then it might help them to speak to someone on the Macmillan Support Line. It's free to call on 0808 808 0000 and there's someone available every day from 8am to 8pm.

    You are most definitely not a fraud!!!! As I said, my version of melanoma was the skin variety and I wasn't ill with it either. However, I still had to go through treatment to remove it and to make sure that it hadn't spread elsewhere. I also have to have 3 monthly check-ups for five years to make sure that it hasn't come back.

    I can see that you've posted your question about whether there is any help towards the cost of travel and prescriptions in the ask an expert section of the online community and they will certainly be able to answer those questions for you.

    It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • FormerMember
    FormerMember in reply to latchbrook

    Thank you for your reply . I find it very difficult to talk to my family members about how I feel as I don’t want them to worry. Although I’ve had my treatment I still feel anxious as to the outcome and any effects for the future . 

  • That's the great thing about the online community , you don't need to worry about upsetting us! We've all been there and got the t-shirt and will look to give as much support as we can.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Thank you 

  • FormerMember
    FormerMember in reply to FormerMember

    HI Taz24 

    Financial help with cancer treatment is of course dependent on individual financial status.  But generally if you are on certain means tested benefits you may be able to claim reasonable travel costs in regard to your treatment . You could previously claim directly from the hospital cashiers office upon presentation of relevant proof but this transaction is now done online by bank credit.  If you travel by car a reimbursement per mile is calculated . You will also qualify for a prescription exemption card valid for 5 years   link below  https://services.nhsbsa.nhs.uk/check-my-nhs-exemption/start

    Another source of help which offers more broad financial support for health costs is  the HC2/HC1 scheme available here 

    https://www.nhsbsa.nhs.uk/nhs-low-income-scheme

    Hope this helps 

    Owen 

    www.nhsbsa.nhs.uk/nhs-low-income-scheme