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Secondary Breast Cancer: Benefits and me

Ismena Clout
travelling 300x225 Secondary Breast Cancer: Benefits and me

(Getty Images)

There have been lots of stories in the press over the last few years and months about the changes to the welfare state and the cancer drug fund. I mentioned in my previous blog that I had designed my working life to allow me to stay off benefits as much as I could but my diagnosis of secondary breast cancer, which includes extensive bone damage changed that.

I am now the recipient of the disability living allowance and I can’t tell you how much it has already changed my world. The living allowance means I can pay to have my groceries delivered to my house, so I don’t have to struggle around the supermarket carrying all the weight of heavy shopping bags. And also, I can have help around the house with things that are now too tiring or painful for me to do.

The biggest benefit has been the mobility portion of my benefits. I have transferred these funds to a motability car and this scheme is simply amazing. My world had been getting smaller and smaller as I was confined to my home more and more. I could get out but travelling on the tube was so painful, stressful and risky from all those people coughing and sneezing that I was finding myself avoiding travelling altogether. My diagnosis means I am very susceptible to germs and colds affect me so much more. I was also slowly starting to hate London for its mean selfishness, it is a hard place to be sick.

Now I have a car and a blue badge which means I get to use parking spaces reserved for people with disabilities – and what a change this is! I drive to see friends and family and use the car for work too. Now that bit was a challenge as central London doesn’t honour the blue badge scheme in the same way as the rest of country, you can park in one of the very few disabled bays but only for four hours and you get an extra hour on your pay and display which in central London can be very pricey per hour!

So before heading to meetings, which can be all over London, I have to research carefully where parking is, how far will I then have to walk and does that mean I can do all the meetings I have planned for the day? You learn short cuts though, like Islington honouring the blue badge, so for City meetings I park there and grab a bus back and for hospital appointments, I park in Hammersmith and Fulham.

Despite these challenges, I am learning to fall in love with London again as I get to drive past some of the most amazing sites in the world. If I’ve had a bad day then I’ll drive home through Parliament Square or past Buckingham Palace. It always cheers me up and if I have Footloose by Kenny Loggins playing at the same time then it’s a double cheerer upper!

This benefit has opened my world up again and is letting me live my remaining time as fully as I can. The thought of it changing and me losing the benefit is scary. And that’s on top of all the scary stuff I deal with every day with my health.

The other change going on is to the cancer drug fund. This is presently a compromise between NICE not approving expensive cancer drugs for all but them still being funded on a case by case basis. I would love NICE to approve the treatments  for all. The way I see it is if an expensive drug gives someone more time then it’s worth it – once they pass away they aren’t costing the NHS or state anymore money. For example, I’ll never claim my pension that I’ve been paying for. I’ll never have children that will use the school system. I won’t be driving on the roads anymore or using any of the other services out there provided for us. So on the scale of it, what is a few thousand quid for some drugs to give me a few more months with my family?

I was talking to a medical professional about this recently as NICE have now turned down about six secondary breast cancer specific drugs with one in appeal at the moment. He said that if that is turned down and the drugs fund not replaced then our treatment of patients will be on par with the third world. To think all the national insurance I’ve paid to date will not be there for me at the end is heartbreaking and means the system I’ve put my trust, faith and votes into has failed me when I needed it most.

All this instability adds stress and worry to what is already such a stressful and worrying situation. After being able to trust the NHS for so long I feel that is slipping away because of the changes take place – there is so much uncertainty in the air.

For more information about secondary breast cancer visit www.breastcancercare.org.uk/secondary

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  • dewdroppings

    How about you initiate a blog “I won’t let cancer cells reach the parts other healthful goodies can reach. I have my first two followers on my blog furiouscuriouscancersurvivor on google. Two beautiful African women startng their survival journey, Huge responsiblity. I think stage four BC should br on 80% raw food , mistletoe.a remarkable supplement of rice bran to up immune cells(it worked for me) anf calcium D glucarate. Lots of green smoothiew detox estrogen.

  • clouty

    Not another wonder cure! If I had a penny for each one… and if they worked, after you spend all the money and take all the nasty stuff it would be great. Well, pigs might fly too, I suppose ;)

    ps this isn’t Issy, it’s another clouty

  • Ismena Clout

    Wait till my next blog… just going through the editing process…

  • dewdroppings

    You know why I am alive and well? I refused chemo and tamoxifen and accidentally took natural progesterone cream for a year before diagnosis. Read the book written by that doctor of medicine in Scandinavia who refused to remove the tumor and sat in the sun and ate fruit, You have to do the opposite from before and stop working. Do I work? No I just blog to warn others.May God or nature bless you.


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