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New here and need help

SuzR
Posted by

Hello All, my 38 year old husband has been diagnosed with stage 4 mesenchymal chondrosarcoma, which is a very rare bone cancer that only few thousand people in the world have. He was diagnosed last year and he’s been studying very hard to keep himself alive and is proficient in his cancer (with the limited amount of information and studies that is available). We are currently living in Switzerland and that is were he was working as a contractor when he was diagnosed. I followed him there when I was in my last month of pregnancy. Gave birth to a healthy boy there and we were oh so happy and then the diagnosis came when our little one was only few months old. My husband went through aggressive chemo and lots of rounds of radio, we had a remission in December last year only to be told in March that the cancer spread into his spine and he has four “nodules” in his lungs. There is no other treatment for him now, we were told, so we are following Jane McLelland book and used Care Oncology Clinic in London. Anyway the reason why I’m messaging is to ask for help. We are planning to return to UK now and I need to know what we will need to do to get the rice care for my husband. Do we need to go to GP first or go straight to a hospital? What are the next steps once we get back to UK. My husband is still quite active but he cannot work, so I’ll have to find work and our boy will have to go to nursery. Do you have any recommendations for good doctors, GPs in Oxfordshire? Also people were mentioning to me that my husband can have some benefits but I’m not sure how to go about it. I have to try and organise everything remotely from Switzerland at the moment. Thank you for reading my “essay” and any helpful suggestions would be appreciated.

latchbrook
Posted by

Hi  and welcome to the online community although I'm sorry you've had to find us

It must be quite daunting moving back to the UK especially with everything you need to organise. I've had a look on the internet and found this information for you which tells you what you need to do to access healthcare from the NHS if you are a UK national moving back to the UK.

I don't know what benefits you and your husband will be entitled to but you could give the Macmillan Support Line a call on +44 207 091 2230. It's not free to call from abroad but the welfare rights advisors are available from 8am to 8pm, Monday to Friday to help you work out what you're entitled to.

You might find joining the bone cancer group useful. I typed 'mesenchymal chondrosarcoma' into the search bar in that group and did find a couple of other people who mentioned this type of cancer. Also take a look at the carers group as it's a safe and supportive place to share your worries and concerns. 

To join either or both of these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then introduce yourself or post a question after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your husband's journey so far into your profile as it 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 'Edit 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.

x

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

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buttercup01
Posted by

Suggest u ring the helpline on +44 207 091 8am to 8pm UK time 7 days a week for advice on benefits and also support for you all.

Do explain to them you are coming back to the UK soon.

Meanwhile u might want to join the Bone cancer  and Family and friends groups.

Do u have any family and/ or friends in the UK? I hope so, as u will need support once over here. 

Sorry, this has crossed with Latchbrook's reply. She must type faster than me lol

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
KTatHome
Posted by

Hi , I can see you’ve already had a great reply from , you asked so much in your short question ! And in this section we are just individuals affected by cancer. 

You asked about recommendations for GPS in Oxfordshire, I think you will just need to register with a GP near to where you will be living (I hope they are all good) to find GPS you could use this link to the NHS. As you said you thought there was no further treatment for your husband, and as a patient we get referred to the hospital from our GPs, I think that would be your starting point.

https://www.nhs.uk

You asked about benefits, and latchbrooks suggestion of the phone line is a good one, if the cost is putting you off you could post  the ask an expert section as for questions but they take a few days to reply.

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask-an-information-and-support-adviser-14815781/discussions

I also wondered if he is receiving any benefits in Switzerland that could be exported over to this country, as many many years ago I worked with some case where this sometimes happened and the benefits were higher from the other countries but the paperwork had to be started overseas. 

The citizens advice bureau may be a good website to look for info on as well.

https://www.citizensadvice.org.uk

There is another Macmillan group I thought of,  it’s not very active but people in there may have some experience of moving here, it might be worth a try.

https://community.macmillan.org.uk/cancer_experiences/brits_abroad/discussions

Best wishes to you at this difficult time.

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

SuzR
Posted by

Thank you for your quick respone