Roller coaster week

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It’s Friday and the week seems to have gone in a flash with a lot happening along the way.

Monday I claimed benefit for the first time in my life: I claimed Employment Support Allowance (ESA). For those of you outside the UK this is a benefit, paid by the government for people who are unable to work due to illness or disability. There are two types of ESA, and people may be entitled to claim one or both of them; I have claimed Contribution-based ESA – you can get this if you’ve paid enough National Insurance contributions in the relevant tax years, and Income related ESA, you can get this if you have no income or a low income. My husband is self-employed and earning so I won’t get this one.

You have to attend a medical assessment called a ‘work capability assessment’. You also have to fill in a ‘limited capacity for work’ questionnaire that looks at how your illness or disability affects what you do. After this you are told whether you’re considered fit for work, or whether you’re entitled to ESA.

If you are entitled to ESA, you are placed in the ‘work-related activity group’ or the ‘support group’. People in the work-related activity group get less money and are expected to prepare for an eventual return to the job market. If you have cancer and are currently receiving cancer treatment then you are normally put straight into the ‘support’ group, so that’s where I hope I’ll be whilst I am receiving treatment.

In order to claim you have to ring a specific phone number, which they took half an hour to answer, and then you are asked loads of questions on the phone, which took about another half an hour. It felt strange having to put myself in this position, I almost felt guilty about claiming. It’s hard enough trying to deal with a diagnosis and a huge change in life style; that’s sufficient for anyone without feeling in the back of your mind that others are judging you. After all I don’t look like I have a disability! I also have ‘good’ days where I am able to do most things so somehow I find myself questioning whether I really deserve to claim those benefits payments if I can sometimes do ‘normal’ things. However I know that I wouldn’t be able to sustain a full weeks work: it would exhaust me. I fear that others may see me out enjoying myself and deem me not to be disabled enough as they have seen me dancing the night before, but I have probably been in bed all afternoon to enable me go out and will have to recover the following day too, is it wrong to want some normal ‘me’ time?

Tuesday saw me going to the hospital for a review with my specialist cancer nurse. I had my bloods taken and when she had called my name she started to walk to my consultant’s room; this is when I realised it wasn’t going to be good news!  At the end of cycle one my para protein and light chain levels had fallen but not as much as they had hoped, now I was at the end of cycle two my para protein had stayed the same and my light chains were creeping back up again, not what was required of them at all!  So action must be taken! Thalidomide is to be added in, but before they can do that I have to go on Warfarin as Thalidomide can cause blood clots. So home I went with the Warfarin for a few days to get my blood to the right consistency, here I am on Friday and my blood is still at normal consistency so the dose has to be altered and I won’t be able to start the Thalidomide until next week.

So now I will be on the full VTD treatment and let’s hope the drugs start to do their job. Some myeloma is ‘refractory’, in other words doesn’t respond to treatment, which is why different drug combinations have to be tried so lets’ hope I’m not a total refractory case!

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