I have a malignant pleural effusion which I have now had drained twice, at first the hospital passed me from dept to dept however now have confirmed that I have ovca and im awaiting the news after mdt meeting on Monday regarding what they will do with me.
This is after over a year of me going back and forwards to the docs with bloating, weight gain (unexplained) constant pain etc oh and a family history! god bless them they gave gave me higher dose of anti-depressants and said it was in my head, because my poor mum died of bowel cancer 2 years ago!!
SO..... In the meantime I'm laid up in bed because lung is maxed out,I thought Id do a bit of research.
So can I just confirm apart from the standard benefits and possibly a cheap wig, there are absolutely no benefits to this wretched disease? A friend of mine who also has ovca couldnt text me because she couldnt afford her phone bill! this is ridiculous!!
But before I go campaigning to companies for money off vouchers and freebies for us all. is this correct?
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littlemissfighter
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No perks im afraid....... I still work full time, mainly because I want to but if I didnt Id have no choice because there is sod all out there. Even with painful feet/legs etc, chronic fatigue, im afraid theres nothing .....
Hello and welcome. I am really sorry to hear that you had to wait so long before your symptoms were taken seriously; it is outrageous that this keeps happening!
There are certainly no real benefits to having this disease. I was lucky to be able to stop working because my work pension scheme paid up so I have not tried to claim any state benefits, but I know others on this site have done. All cancer patients are entitled to free prescriptions and I also have a disabled badge, which made life easier when chemo exhausted me. Something I didn't claim, but really should have done, was free parking at the hospital on chemo days as it is very expensive. I wore my wig twice.
I hope that the hospital now act quickly to give you the treatment you need and that you are feeling more comfortable very soon.
Hello. We are always gentle in this site, just sorry that you have had to join us.
Benefits is a mine field. PIP, personal independence payment, replaced DLA and apparently much harder to claim.
ESA, employment support allowance is another benefit also council tax and housing benefit may be available, depending on your income and circumstances.
Best see a benefits adviser in the local CAB or some of the Macmillan nurses have benefit specialists who may be able to help.
There is, or apparently was, automatic DLA when you were having chemo. But whether that works for PIP, only Atos knows. If you can claim under the special rules, you get PIP quickly with few questions asked, but you have to get the form filled in by your doctor. So alas, no perks unless you count a maximum of £124 a week (I've never managed, so I'm not sure). You should also be able to get a blue badge if your treatment effects your mobility. Best wishes, Vx
Hi, i have visited citizen advice and as employed even part time and my pay stop, living with husband only thing i im titled to is PIP which is hard to get. So i gave up with benefits ... Not fair when u cant work and there is not help for us but for people drinking cider and smoking weed all day there is benefit for people like that! Mad world! Sorry for moan
Hi, I find it shocking and unbelievable that Drs are still misdiagnosing this disease, even with classic symptoms and family history. I must admit I have lost faith in GPS over the years. But have a couple of new ladies who are good now. All the best for your treatment, sorry you have had to join us. Trix
I am sorry you are on this site and had such delay in diagnosis. Some one definitely missed main symptoms bigtime. But now you are diagnosed, you will get a treatment plan. My advice is ask questions of the gynae oncology team. Sometimes we tend to blame gps for late diagnosis but its not always the case. Sometimes, they have a battle to get the gynae team to listen to them and to the patient as what happened with my first recurrence. I wish you the best and I would recommend that any questions that you think of, write them down and ask the team.
No perks to this . Welcome to our site and hope you find it helpful and supportive . Depending on your circumstances you maybe able to claim some benefits and the McMillan welfare service is very knowledgable. If you work you should be able to claim employment and support allowance after the standard sick pay ends. Personal independence allowance can be claimed if your treatment affects your mobility and everyday activities that you may not be able to do yourself. It can only be claimed if this has been for the last 3 months and likely to continue for a further 6 months . I claimed back in January and not even had an assessment know doubt bedtime it comes around I will be better and then told don't make criteria . Unless up you meet the special criteria with only given 6 months to live and we hope that doesn't apply to any of us soon.
Hello and glad you have found us but sad to hear it's taken so long for you to be diagnosed and get the treatment you need. I checked my life insurance when I was diagnosed and found they will pay the mortgage off in certain circumstances, so worth checking any policies you may have. Other than that I'm afraid there is very little financial help available. I've been in remission for over a year but still ache all over and tire quickly and find my job very hard work. All I would say is try to cut down your working hours and responsibilities if you can to make your life a bit easier. Wishing you the best of luck, love Dawn x
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