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My Cancer treatment

Support for people with Metastatic cancer

One of the things that I’ve found really helpful since my stage IV diagnosis has been a document that gets handed out by one of the members at the secondaries breast cancer care group I go to! Its full of information about what we’re entitled to, now we’ve essentially got a terminal disease! And I thought it might be helpful to create a document on here that has the same info, and a few more things that I have picked up along the way!

It’s very specific to the UK, so I’m sorry, if you’re not based here, this might not be awfully helpful for you! Also, if you’ve been diagnosed with an earlier stage of cancer, I am not sure how much of it will be relevant, but some might!   

 PIP

Most of it hinges round getting the Personal Independence payment, which as someone with incurable cancer, that could kill you at any moment, people in our position are entitled to. But you need to get your nursing staff to fill out a DS1500 to say you are sick. Once this is filled out, I’d advise speaking to your local cancer centre and see if they have anyone there who helps with financial things and can help you make your claim. Most of the people I know who have made a claim through someone else have done way better than the people who have done it themselves!

Travel Help

Once you have your PIP, then you’re entitled to get a blue badge. And a Blue badge means the use of disabled spaces and in some places, free parking. I had to apply through the local authority.

I haven’t applied for the disabled bus pass I can also get but, same again it’s just a case of applying through your local council for free bus passes for you (and a carer usually.)

And you can also get hold of a Disabled rail card that gives you 1/3 off rail travel for you and your carer. You do have to pay for it, but I’ve definitely covered the cost many times over! https://www.railcard.co.uk/    

Invisible illness lanyard at airports – UK airports are part of an invisible illness scheme that lets you go and get a green flowery lanyard that gives you fast tracking through security and customs, and in some cases, early access to the plane. They are free. Just google the airport you’re flying from to find out where to pick yours up from.  

Helpful cards

Access Card costs £15 for 3 years. You tell them what your disability causes in terms of side effects and the card lists them, so it’s easy for people to see, at a glance that you, for example, need access to a disabled toilet, or require a carer at events. It is also starting to give you discount at majoy retailers, a bit like an nus card, but it’s not as widely accepted! http://www.accesscard.org.uk/  

CEA card costs - £6 for the year and it gives you a free carers ticket at the cinema, which we really haven’t taken advantage off enough this year! https://www.ceacard.co.uk/  

Other bits of info

Lots of music venues, theatres and festivals give you a free PA or carer’s ticket with proof of disability (we’ve used PIP mostly) you can also ask for more comfortable seating, or special standing areas and access to the disabled toilets through it. I’m now registered with Leeds fest, Glastonbury and live nation so if you get tickets through them, we don’t need to show ID again.

Our local theatres also allow carers, as do some of the smaller music venues.

You can also take a carer with you, for free, at places across the country like theme parks, national trust, English heritage, sea life centres, football matches, zoos……It’s 100% worth asking the place you’re going when you buy a ticket to see if you can get someone in free with you!

 

Support, freebies and days out

If you are under 40, then get in touch with the willow foundation. they provide days out for people with cancer. We’ve got something special lined up for later this year! https://www.willowfoundation.org.uk/

Ellies friends also have free gifts and concessions for people with cancer - https://www.elliesfriends.org

As does Something to look forwards to https://somethingtolookforwardto.org.uk/

Penny Brohn centre in Bristol provides support and care for the well being of people with cancer, they also offer counselling and residential courses - https://www.pennybrohn.org.uk/ I know some people who have been to their living with cancer courses and they RAVE about them. It’s something I really have to get myself to at sometime soon.

If you’re here because you have a breast cancer mets dx, then Breast cancer care have groups for people with mets too, which I have found really useful. And they do a weekend away, which was excellent too!
And if you're here because you too have 'Young Breast Cancer' here are a few places I found to be super helpful.

 

Visit the Young Breast Cancer Network on facebook and join their private group. And seek out Trekstock. They're an awesome charity that supports young people with any kind of cancer. They too have a facebook group but their site has loads of great stuff to support you through your treatment! If you're in Sheffield please go and see Cavendish Cancer Care.

 


 






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Thanks for stopping by and reading my ramblings. I hope to see you again soon.