Price Tag

True story, Cancer is a blood sucking and money grabbing parasite. It robs people of so much. Too much.

💰💳💷

As a cancer sufferer, I know the hidden costs of cancer and at this point in my story, my hidden costs pale in insignificance to what other people have spent and lost. In a game that ultimately hinges on life and death, any consideration to money seems tasteless. If you want to see a bright side, the fact that money or my lack there of, is occupying my thoughts at the moment shows that I have yet to be truly affected by the horrific costs that can come with cancer. In my present however, the financial worries that accompanies my relapse are costing me more than just my lifestyle, it’s threatening my independence.

Whether you have cancer or know somebody who has cancer, in the UK at least, cancer costs something, even if it is just something as uncouth as money. I am fortunate enough to live in a land where all my healthcare is paid for; I have expressed my sincere gratitude and relief about this before. I have also talked about how My Myeloma had made me a pauper. Never though, in my story thus far, has my money and my ability to earn it been as compromised as it has been since I relapsed. I am in dire straits and you don’t get money for nothing. Accept, that is exactly what I need, not that I would describe cancer as ‘nothing’.

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With the exception of my early months with myeloma and my stem cell transplant, I was able to work and have an income in some capacity since my diagnosis. In these early days of my relapse, the jury is still out as to whether I am able to work on my current treatment. Everybody is telling me that my current priority has to be my treatment, and thus, despite trying for the first few days, I have not worked since. Due to the sick leave I have already accumulated, this means one thing in terms of my finances, and that is nil pay. It is my reward for having cancer. I have been told that when I return to work, my financial situation cannot be a consideration. There is no way in which it cannot be a consideration, but I am not stupid enough for it to be the decision maker. Inevitably then, at least in the short term as I regain my strength, my cancer treatment will not be the only thing the taxpayer gives me.

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I have had a job since I was 11 years old and the thought of government handouts does not sit well with me. I actually feel quite guilty about the fact that the benefit system is the only option for me to maintain any level of independence. I was 28 years old when I was told that I had myeloma and although I had a pension plan, I did not think about life insurance or any of the other things one sees advertised on digital tv channels along with the cancer charity adverts. Some might say that if I am not working, I should live off my mother instead of the State. Unfortunately, whilst this might appease some of my guilt, it would require packing up and moving away from the life I have created for myself. My Myeloma has taken away my money, my ability to socialise and it may still take my job; I think if I reverted to my childhood it would tip me over the edge and I just would not want to fight anymore. My good days are few and when those days come, I want to be able to embrace them doing the things I enjoy. I would lose the strength to fight My Myeloma if I took away the tools that keep me sane and stopped doing the things that form part of my identity. When it comes to myeloma, I am also sinfully suspicious and I would class leaving London as a bad omen. I am not ready to give up yet and I will not take anybody telling me otherwise.

I have investigated the UK benefit system previously, I told you all about it and the endless amount of forms I faced post transplant. Fortunately, at that time, I was not in a position where I had to solely rely on state handouts and I only applied and was granted something called Personal Independence Payment, that would be a disability living allowance in old speak. Now however, I have to delve that little bit deeper. Macmillan were on hand to advise, and in the coming months I shall be in receipt of Statutory Sick Pay, a bargain at £88 a week. To subsidise that, I shall also be applying for a few other things once I have multiple copies of anything to have ever been printed with my name on. It’s going to be a tiring process and one that I wish I did not have to partake in, especially when I am on so many opiates. It makes it incredibly difficult to focus. The sad truth is, I need your money, I need it just as much as I need my medicine. If I have said it once, I’ll say it a thousand times, living costs money, even when you have cancer and if there was ever a time when living becomes essential, it is when you have cancer. At least if my treatment remains as a periodically debilitating as it is at the moment, living will cost me less money than it does when I am at my New Normal. Silver lining.

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The hidden cost covers more than money. Since my diagnosis, being able to work and to do something that is not about my illness has been my sanctuary. Working allowed me to have something independent from myeloma as well as permitting me to be financially independent from it. I may find in a month or two that I need to work, not for money but for my mental health. Myeloma does not define me, neither does my job, but taking the latter away just makes more time for the former. Not knowing when I will go back to work is disconcerting. On a practical level, I cannot be the most desirable employee in the land and at times, I do not know if this means I will ever be able to go back. One thing is for certain, my superstitions are too great for me to consider a future without work. I need hope and I need my life and working is part of that. Admitting defeat and surrendering before the battle is not a part of that.

As far as I am concerned, all of this is a temporary measure. I’m fighting for survival in more ways than one. It has to be temporary. I will not hear otherwise.

💰💳💷

In other news, thank goodness I can cook, otherwise eating thriftily would be as dull as what I am sure living thriftily will prove to be. Of course I am being sarcastic, nobody can put a price on the fun My Support Network offers.

EJB x

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3 thoughts on “Price Tag

  1. Simon says:

    I read every word of that and I was touched by your explanation of what cancer means. Yours words certainly come from the heart ! I would say if you can express yourself so deeply and precisly, then cancer certainly has certainly met its match. Keep going and dont give up the fight ! Simon (Carer for a Myeloma Cancer patient) Leeds

  2. There’s something called “group on” (I think) on the web that allows people to donate to causes or projects… how about you writing a book and ask people to donate to it? You are a skilled writer and have a lot to offer… I’d donate!

    • Simon says:

      I would second that …….Come on Mrs Bones lol . . . .We love your writing and deep sense . . . .Empathy with others !!!!!

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