My Worth

With the exception of the first few weeks of my relapse when I near dehydrated myself due to the constant flow of tears, leading those close to me to believe that I had given up the good fight, I have spent the last two months being the brave old soul that I know and love. The smile you see, is not a fake one, I am committed to finding the best in the situation I find myself in. Even if that situation involves my ever expanding waist. I know I am doing well given my current predicament because my counsellor has told me so. The reason, I believe I am coping, is because when I feel a problem looming, I acknowledge it. Hiding it is unhealthy and let’s face it, I’m unhealthy enough as it is.

In the last fortnight, coming off the back of my dodgy stomach, I have noticed that I am at risk of rocking my battered paddle boat. I’m snappy and my sleep is broken by something that is not related to rolling from left to right or my weak bladder. At the forefront of my mind is money. My impending lack of money. It’s a multilayered mess of stress and uncertainty, both in the short and the long term.

On 30 August, I officially went onto nil pay, which means exactly what you think it means. Or at least I think it does. Until I went onto nil pay, I was unable to apply for the government handouts, which I hope are going to keep me afloat until the end of the latest volume of My Myeloma Tale. Due to my unexpected illness, I was a week late in applying for the three benefits I think I am going to require. At least, the three benefits the various faceless people I have spoken to on the telephone have told me I can apply for. The applications were long and they were tiresome, and despite the fact that all three are now in the post, I am not any clearer about how much money I am going to receive.

Thankfully, I am already in receipt of Personal Independence Payment, which was once called Disability Living Allowance. Since I was granted this money in December last year, I have used this money for the reason it is given to me, to help me live my life around my disability. Until I have confirmation from the Department of Work and Pensions and Islington Council, this money has become my main source of income. A source of income that does not cover my rent, let alone my food delivery or paying somebody to clean my flat.

I am also receiving some sort of sick leave entitlement, but it is not Statutory Sick Pay, which I was recently told I have exhausted. Prior to this, I sought advice from Macmillan and I used my own smarts to research the benefit system. It’s a pernickety system, and having discovered that I am not entitled to SSP, I no longer know if the several forms I completed last week are correct. As soon as I begin to question this, my brain explodes with questions, anxiety and paranoia over what money I will get or not get as a result. It goes something like this:

em>If I am no longer eligible for SSP, does this mean I am entitled to more of less money? Have I committed fraud by saying I am not receiving SSP but I am receiving the equivalent amount of money from another source? Why have I exhausted SSP, because Macmillan advised me that it resets after eight weeks of full time work and pay? I need to sort my pills out. The DWP guidance is unclear, do I need to phone another anonymous help desk number to get an answer, and if I do get an answer, how do I know it will be the correct one? Oh gods, I am tired. Does this mean that I should have applied for ESA instead of income support? If that is the case why wasn’t I informed that I had exhausted SSP and given the necessary form? WHY AM I STILL CONSTIPATED? I need to sleep. Can I afford to buy a can of Rio? Will I have to reapply for everything? Will the money come through before my rent is due on 15 October?

To date I have applied for Income Support via the Job Centre, which required a 45 minute phone call followed by a 14 page form received through my letterbox two days later. The application was also accompanied by two months worth of wage slips, a copy of my newly issued passport, my PIP entitlement letter and letters confirming my nil pay. For housing benefit, the form was a mere 29 pages plus seven support documents including those listed above and my tenancy agreement, my P60 and a copy of my bank statement. Only one telephone call was required asking if my tenancy agreement arrangements would fall within their rules for assistance. Yesterday, I completed my final form, which I requested eight days previously for Working Tax Credits. It was a form, that at this stage at least required no support documentation, but only asked for my financial situation up to April 2014. The forms cost me £10 in photocopying and £2 in stamps. Stamps!

Having spent most of my good hours last week repeatedly declaring my single status, looking at my weak bank balance and putting pen to paper to say that I need somebody else’s help, has surely made me question my existence. When I am not being melodramatic, it just makes me question the choices I have made and continue to make. I do not know how it is possible to fit your personal worth on a form, but that is what I have had to do, and it does not amount to much. And then I start to think:

‘What if I do not get housing benefit? What if they do not approve of the number of tickets I purchased for the London Film Festival even though they are going to get my good cylinder through Cycle 4? What if they do not accept the tenancy agreement? My back hurts. Will I have to apply again for the tax credits to reflect my nil pay? Why was there not space for this on the form? Is my landlord going to put up the rent? How am I going to get to the hospital? I have cancer.’

If all this was not enough, everything else going on around me has become a chore. Answering my phone is a chore. Speaking on the phone is chore. Emailing is a chore. Things that will only take a few minutes feel like they are the equivalent to writing a dissertation, hell, even keeping my blog up to date has felt like a chore. Like many things, I know that the minute I do them, I feel better, but I fear managing them in the first place. I do not trust my mood, which I fear is assisted by the Dexamethasone, Revlimid and Cyclophosphamide.

Think I am exaggerating? Well, I am fortunate enough to be going on an externally funded holiday in a fortnight, and last week, the tour operator said that I needed to get medical approval before I travelled. Not only did this cause me stress, but it caused Mama Jones to worry, which then increased my stress. I know it increased my stress level because I initially ignored it, shouted at my mother and made her mange it. There is only so much my drugs allow me to deal with in a given week. The situation was not helped by the fact that the Medically Trained Person who said that I could go on holiday was not in last week, and another Medically Trained Person said that they did not think it was a good idea. It was yet another thing to make me feel itchy. Fortunately, the approval came through yesterday, but it threatened one of the few things I have that I am genuinely looking forward to.

I am also in the middle of sorting out my long term financial security, and this, above everything else makes me feel pressured and most uncertain about my future. There is nothing I can do but wait and continue to believe that my treatment will be successful. In the short term, I have to make sure that I get out of bed everyday, because this week to date, the inclination to do so has left me. I used to me good a dealing with pressure, but this is not the electricity going off at a campsite full of irate customers; this is my life.

As with the pain in my back, I feel like all of this is taking my focus and energy I should be giving to my treatment, away from my treatment. I have felt worse in the last few weeks than I have in a long time, and I believe that this is only slightly related to my medication. Money is stressful and having cancer does not change that, although in an ideal world, it would do. It’s the reality of having cancer, and right now, I truly wish it was not. Chemotherapy is enough for me.

I will leave you with this thought. According to a handy leaflet from Macmillan, a single, childless person under the age of 34 can get a maximum £350 of benefits a month excluding PIP and ESA payments. This means that I will get between £850-2100 a month; I just have no idea where on that spectrum I am going to end up. What am I actually worth?

That equates to a sleepless night or two.

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💶💷💵💴

EJB x

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2 thoughts on “My Worth

  1. Tj13 says:

    The same things keep me awake at night worrying about my daughter. She lives in the city, has a job through which her medical insurance comes, rents an apartment, pays her bills, buys food & clothing on her own. If she can’t work this all goes away. Last time before her SCT she went on short term disability for 6 months. Now she has relapsed. She goes for chemo 2 days a week. Thank god her company lets her work electronically from her chemo chair on those 2 days. The stress of all the paperwork & worrying about if it’s going to work out is not what a chemo patient needs.
    Enjoy your holiday.

  2. Barbara Brock says:

    EJ I feel so badly that you are going thru all this. I can really relate to it but you know how important it is for all cancer patients to control stress. I don’t know how much role it plays in getting cancer but I think it can really take its toll on you if you have it. Your situation is what it is & you will have to live with it. Maybe you have a family member who could help you out if you’re a bit short. Be strong.

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