Tag Archives: money

Just Giving

Charities are great. 

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Personally, or should that read, ‘selfishly’, I am particularly fond of the cancer ones. Macmillan, Cancer Research, Myeloma UK and the rebooted Bloodwise (once known as Leukaemia and Lymphoma Research), have all contributed in some way to my treatment and all round, general well-being. You should all love them and donate your disposable income to them for that reason alone. I am, however, pretty sure that as special as I think I am, I am not an isolated case when it comes to the positive impact these charities can have. I  regularly find myself torn as to which one deserves the most EJ love… Bring  other charities into the giving equation and I am stumped.

A charity, by definition is an organisation designed to help and raise money for those in need. Walk down any high street, sit on any mode of public transport, watch television the old fashioned way or simply look at any type of social media, and you will see that there are a lot of people out there in need. A lot of people. I don’t want to shock you, but there are many bad things in this world. ‘Bad Things’ is the official term, I have spent weeks work shopping, to cover all the horrific, life changing and slightly irritating things that could ever possibly happen to a living thing. 

If all the shopping centres, buses,  adverts featuring music by Kate Bush and a phone number, door knockers and status updates are true, there exists a charity for almost all the Bad Things that can and do happen everyday. Illness, death, poverty, war, famine, the environment, dogs, cats, dogs and cats. 

The list is endless and can appear, relentless or at the very least, saturated.

It’s a common scene, when a person cannot make it down a street without being pestered by a person donning a brightly coloured anorak and a fake smile, rattling a money box or dangly a clipboard in your face. As it is now a mere 80 days until Christmas, we are in peak charity (over)drive. It’s the blitz. Everybody, everything, even those dogs and cats, need more money.

On the other hand in my pocket, the fact that so many charities do exist, is moving. It is reassuring to know that there are many people in this fair land, unlike me, who care about other beings enough to invest their  time and money to the betterment of others. The Bad Things are being tackled by Good Things. I tried to find out how many charities there are in the UK, and I stopped when I read there were over 16,000. 16,000? Many, many Bad Things. This is an aside, but I  was surprised to learn that cancer charities only accounted for two of the top ten highest earning charities in the UK.

I have reasoned, whilst starting this new paragraph, that it is not as simple as Good (the charities) verses Bad (the bad things). Charities must have to compete with each other. If charity really goes begin at home people, then how on earth do people decide which individual charities to donate their hard earned, and limited cash to? Maybe people don’t think, and they donate as and when they feel backed into a corner; I know that is what I used to do.

It’s not just a question of cash either, charities need investment in time, knowledge and understanding. It could be a result of my constant drugged out haze, but I cannot begin to fathom how charities find a voice loud enough to be able to endure, when there are so many charities to choose from, who are equally and unequally vying for your attention. 

My charitable attention is selfishly directed to illness, and a certain illness at that. I would think you a fool if you could not deduce the illness of which I speak. I do not know how able bodied and able minded people decide. In my pre cancer world, I would donate out of guilt, empathy, a good advertising campaign, office related sponsorship or various combinations of the above.  With 16,00 charities in the UK alone, it makes for an extremely competitive in the Third Sector. Sorry, I meant cutthroat. 

In the last few years, maybe because I am more sensitive to campaigns, I have seen charities become more inventive when it comes to fundraising. The Ice Bucket challenge, Coffee mornings, make up free selfies, awareness days, Movember, girls’ nights in; it seems charities have to think outside of the box to garner attention and take in the big bucks. Charities are a business and just as in business, despite the noble origins, it appears to me, a dog-eat-dog world. 

Last year, when people were scrambling to poor ice over their heads for ALS, I remember reading various comments online that said it was unfair that the charity was getting so much attention and money, when there were so many other, needier charities to donate to. To clarify, I am paraphrasing other people’s thoughts and these are not my own (Mamma Jones asked me to do that, in case people misconstrue my intentions). Anyway, at the time, when I read these commentaries, I did not see why it had to be an ‘either/or’ situation. Those comments felt like cause shaming, or playground antics, squabbling over what is the worst (and thus the best) ailment.

Yesterday, I saw an example of this (at least that is how my sensitive soul read it) on the book they call Face. I read a status update, the kind of copy and paste job that people are challenged to post in the hope that it goes viral. The cause may be worthy, but I deemed the technique they used to spread their message as insensitive, flawed and ignorant. The update read:

October is Infant/Pregnancy Loss and SIDS awareness month! Let’s take some time to remember….[I have edited the middle]… Make this your status if you or somebody you know has lost a baby. The majority of you won’t do it, because unlike cancer, baby loss is still a taboo subject. Break the silence. In memory of all lost.’

Unlike cancer

Call me opinionated, but I think it is unacceptable to pit one horrific and life changing thing against another, wholly unconnected, horrific and life changing thing in order to gain awareness. I cannot begin to comprehend what it is like for a person to lose their baby. It is indeed something in need of discussion and awareness, especially when it comes to how the NHS cares for the parents who have had to endure such a loss. But, whoever originated the above campaign, in my mind at least, lost their credibility, the moment they typed ‘cancer’. The two are not comparable. End of discussion.*

Do people perceive cancer to hog too much of the public sympathy, and thus too much of the limelight? Cancer may well recieve more publicity and support in comparison to other ‘Bad Things’, but it does not mean it is incorrect to publicise or care about it. Cancer charities only accounted for two of the ten highest earning charities in the UK last year, and yet I understand that it can at times, seem like it is prioritised or sits on an indescribable pedestal. But, I wake up everyday and think ‘cancer’, so I am biased. A friend once argued with me because they believed cancer gained more sympathy than mental illness. It’s the sort of attitude that creates some sort of artificial hierarchy, where there does not need to be one. Nay, there should not be one. 

Causes should be judged on their own and stand alone. Charity should be about giving not chastising, and yet the latter will always exist. Of course, we cannot individually give to all charities, but they should be able to exist side by side… Charities are about helping people after all.

And so, in the run up to the festive season when you can see nothing but a rainbow of coloured anoraks and you are bombarded with donation requests, please don’t get angry. The answer is easy, just give to who you want to give to and say ‘no’ to the others. It’s simple maths. 

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As for the statement that cancer is no longer a ‘taboo’ subject; that is another, lengthy, blog entirely…. Until then, I will simply say that my personal experience would contradict this. Strongly contradict it.

EJB x

P.S. This is not foray into the complex world of giving, I was opinionated in 2013 too. https://ejbones.wordpress.com/2013/03/19/the-charity-drives/

* I am aware of the irony that, that was not the end of my discussion.

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Frozen Assets

Chemotherapy makes one absented minded. It makes one forgetful. It’s makes my mind a muddle. A big puddle of a muddle in fact.

Never has there been a better example of the giant dirty puddle that is my mind, than my very recent attempt to fill out a blood form for my weekly full blood count. I’m trusted with that sort of power you see, because I am intelligent. I don’t need nurses to use their precocious minutes doing that. Well, today my nurse and I might have been proven wrong on that front. A mere 30 minutes ago, I discovered down in the blood bank that instead of providing my name, hospital number and date of birth, I gave the phlebotomists my name, bank account number and sort code. I repeat, my name, bank account number and sort code.

In my defence, the form filling did come immediately after I been enquiring about a Macmillan Grant. The chat had to cover my dire financial situation, so I did have money, or my lack there of on my mind when I gave a complete stranger my bank account details. So much for security.

It now makes me wonder who else I am giving protected details to without realising. Many a thing does seem to go above my head at the moment. Fortunately for me, I have no funds for any likely thieves to steal. Maybe that is why I have no funds. My main possessions these days currently live in my freezer and that is not a pun. It is food.

EJB x

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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 Β£10 in photocopying and Β£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 Β£350 of benefits a month excluding PIP and ESA payments. This means that I will get between Β£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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Helpful

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EJB x

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Price Tag

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

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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 Β£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.

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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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Bureaucracy

Have you ever filled looked at a form and thought that you would rather stick a needle in your eye and eat a horse manure pie, than to complete it? Of course you have. Well, that is just the predicament I find myself in at present.

Having cancer, and a cancer that effects ones mobility so much that they once asked a stranger to tie up their shoelace, is not enough to qualify as ‘disabled’, nor does it automatically entitle you to all the money in land. The Government, it would seem, require evidence. Mountains of it. I have spent the last week finding out just how much evidence is required.

To make my life just that little bit easier, I wish to be officially classified as disabled and I would like financial assistance with my rent. I have long been a fan of the welfare state, and although I have some misgivings about taking even more of your money, I feel now is the time to cash in on your enforced generosity. I have a cancer with no cure after all.

The only snag in my planning, is that I am not eligible to your money. Well, my landlord is not anyway. During a productive meeting with the Macmillan benefits advisor last week, I discovered that I cannot receive Housing Benefit, because my half pay still means I have Β£71 per week to live on after rent and council tax. Please note the Β£71 does not include utility bills. So, with my hopes dashed of receiving an extra Β£5 per week, I decided to think of a glass half full and be thankful that I did not have to complete another form, which required copies of my bank statement, two pay checks, tenancy agreement, medical diagnosis, proof of identity, two utility bills and Housemate’s salary details. Tick.

The kind lady, who I eventually won over with my manners and smile forty minutes into our chat, did think I would be eligible for free healthcare services. I know what some of you not based in the land of mince pies, shortbread and Stilton, will be confused by this statement, as you may understand our wonderful NHS to be free. Well, dental care, prescriptions (except when you have cancer) and eye care are not free for all. It’s the recession. So, I was given a twenty page form to complete, which only required a pay check, a year’s bank statement, thorough breakdown of financial assets (this was brief) and a utility bill. Bar a copy of my bank statement, that bad boy was completed yesterday. Tick.

When it comes to being disabled, the bureaucratic definition is somewhat more refined than the general public’s might be, and the definition varies between central and local government. Again, I will reiterate that all of this is to make my life that little bit easier, so it may surprise you to hear that to obtain a blue badge and concessionary travel, I needed to complete and provide the following;

* A 36 page form claiming Personal Independence Payment plus three additional pages explaining my physical limitations, which if approved will mean that in some quarters, including cinemas, museums and theatres, I will be classed as ‘Disabled’
* A six page form to my local council requesting free travel, because getting national agreement does not qualify me as disabled because lyctic lesions in the spine does not an automatic disabled make
* An online form requesting a Blue Badge, I am told that my local council may not allow me this, if I have free travel
* At least one, if not two, independent physical assessments
* At least one medical professional to back up my claims
* Numerous medical documents including a list of medication

Yesterday, I spent much of my day preparing this information. It was mildy satisfying, whilst being completely frustrating at the same time. It is a well known fact that government is a well oiled machine, so it wold be no surprise that I found the forms and information confusing. I received one form in the post that came with a stamped addressed envelope to return it, but I was separately informed that the council will only accept it if I return it in person. I feel like this could be a trick. I applied for the PIP benefit over a month ago and I received the form last week, thank goodness it was not urgent. Fortunately, there is a PIP helpline, which I phoned twice and I when I asked what information would be required, I was told that the help desk person had not seen the form. So, that was useful.

I will tell you something for nothing, I am constantly heading things about ‘Benefit Britain’ and people taking advantage of the system, but in order for somebody to understand these forms, they must be a frickin’ genius and deserve whatever they get. Even the ones who warrant the reminder to complete the forms in ink, with their own information and those of another.

Personally, I do not understand why there are so many hoops to jump. The system seems to be designed so that the applicant is branded a liar and then has to prove their innocence. Living with cancer is just so easy after all. It feels like a competition. My medical ailment is worse than yours… Fact.

Now, after all that form filling and ink, I have to take a trip to a photocopier, and then wait, and do a physical assessment and find out more about a mystery taxi service and try to recover from my transplant. Tick.

EJB x

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Endurance Tests

Cancer is an endurance test. One thing I have learnt since my diagnosis, is that to enable good health and a continuance of life, one has to put in the training and endure all the shit cancer throws at you. You get your rest, take your supplements, work out the brain, set targets and hope that you will reach the finish line intact.

Eleven months or so ago, when somebody told me they were planning to do an endurance test of their own, I thought I would have long finished this particular test of my own. Long finished. That has not been the case. My test goes on and nobody know when that will finish and that fact makes us all sigh. Sigh.

Tomorrow, it is the Ironman Wales. Wales is a country in the United Kingdom FYI. I won’t tell you all about it again, because I already did that once before (https://ejbones.wordpress.com/tag/myeloma-uk/), when I asked you for your money then. In short, Neil will be swimming, cycling and running tomorrow to raise money for Myeloma UK. It is an endurance test indeed, especially because his wife has just had a 15 day old baby.

So, right now, to assist similar people who are currently on the endurance test that is myeloma, I am asking for your money again.

https://www.justgiving.com/Neil-Whitney/?utm_source=Sharethis

Oh, and good luck Neil!

EJB x

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Material Girl

Money, my friends, makes the world go round. The world go round.

The world go round. You can make your clothes out of old curtains, grow your vegetables in the back garden and ignore social practice, but money will still make your world go round regardless of whether you want it to or not. What I mean is, people need money to exist. People who live in London, definitely need money to exist. I need money to exist.

Since I was a wee girl of 11, strutting the tiles of Langtoft Village Shop, I have been fairly pragmatic when it comes to money. To get money, you work. Once you have the money you have earned, you spend it. If you are lucky, you may find a job that you enjoy. For those lucky few, and everybody else for whom that 9-5 is a means to an end, the simple fact of life is to enjoy said life, you have to have money. Not bags and bags of the stuff, but enough money to feel comfortable, pay your way.

I have worked hard to create my own personal level of comfortable. It’s average looking, but it is mind. I did not pick a profession that will ever pay me bucket loads of money, instead I chose one that comes with a steady income, benefits and crucially, one that I enjoy. That job pays for me to live a life that I have become accustomed to. A life, that of late has been put on hold by My Myeloma and the treatment for it, but within that, I have occasionally been able to experience glimpses of the old me, when my health allows. These glimpses, cost money. Holding on to the things I enjoy, cost money. My life costs money. Even sitting in my flat, not going out, not seeing people costs money, let alone my hobbies of Russell & Bromley and the British Film Institute. The things that were treats before myeloma have became medicinal with it. Even medicines cost money my friends.

Money, money, money.

I do not feel like I have lived a particularly hedonistic lifestyle. Others of course may disagree. Each to their own. I know I have not been overly sensible with mymoney. I have spent it. I spent it all, for I always thought there was time to start saving. Unfortunately, I discovered yesterday, that the likelihood of me being able to do that now is slim. For I have gone onto half pay. My stocks are down. I have plummeted. Fortunately for nosey parkers, I do not come from the school of thought that talking about money is ill mannered, so in actual terms, I have experienced a reduction of Β£15k (figure has been rounded up for presentational purposes). In addition to a pay cut I had to take when I was first diagnosed, since August of last year, I have experienced a total reduction in earnings of Β£20k per year. Still, it could be worse, no pay comes with another four months of absence.

This is nobody’s fault.

I did not smack somebody in the mouth. I have not spent the last year secretly running marathons when I have said I have been sleeping. I have not even been fired. No errors were made. It is not retribution. It really is nobody’s fault. I hate that nobody is to blame for this. It makes me cry.

I always knew, in the back of my mind that this was possible, I told you so in December, but I blocked it out. I could not handle thinking about it for the same reason why I am finding it difficult to accept. Also, and this really is the shitter, I unfortunately misunderstood The Rules and I thought that I had considerably more time and was planning for that scenario. Maybe I should have saved more. Maybe, when I was diagnosed, I should have saved more. As well as going to the hospital, accepting my illness and losing my life, I should have started to save. I did not. My employers have been incredibly accommodating and it is not their fault either. Have I emphasised their kindness enough? They have allowed me to do what I can and out of everybody, made me feel normal again. The Medically Trained People are not to blame, they are the ones fixing me.

The sad fact of My Myeloma is that I cannot work right now. In terms of work, in the last twelve months, I have done as much as I could, I worked during two rounds of chemo (the first round was not formal, it would seem), but that is not enough in this world of money.

It is not possible for me to live the life I want to live, even with the limitations of myeloma, on Β£15k per year. Lord knows what will happen to me when I receive nothing. Shall I tell you why? I have a life in East London, that is anchored in a flat that I have lived in for four years. The flat, costs Β£625 per month plus bills. In case you started thinking, I would not be able to find an equivalent for less. I cannot even look under my bed. I have a pension, whether in the end, I need that, is questionable, but it is best to keep it going for morale’s sake. I care about the planet, it’s creatures and stuff, but I also like lipstick, brogues and Kronenberg. All these things, every time I whip out my Visa, keeps me ticking along. Think less of me if you wish, but this is my life. Money makes me happy.

My Myeloma has taken that away from me.

Cancer takes away so much. It destroys more than one’s body. Already, I have seen my life change to the extent that what I had before my illness is dead and buried with the words ‘in credit’; this extra something something, has just stripped away more. It has taken my last strand of independence. I know I am fortunate to have gone this far without worry (too much) about it, but now, My Myeloma has removed my main ability to cling to my past and because of that, I am utterly, utterly devastated. My devastation is made worse because I have a cancer that will come back, which means, so too will this problem, and it will get worse, as will the cancer. That my friends, is something to look forward to.

Hell, I really am just a material girl, living in a material world. Correction, was…

I am now a girl exploring the benefit system. Apparently, loads of people get them. Fingers crossed that applies to me too, otherwise, the Bank of M&D will have cough something up. Regularly.

My last lingering thought is simple, if I cannot buy anything now, what am I supposed to use the Internet for?

EJB x

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The Charity Drive

Once upon a time, I was the sort of person who was immune to the charity drive. Sorry, Charity Drive. You might have got my money if you cornered me before I was a functioning human being with my fair trade cup of tea. Okay, you may have also been fortunate if you had cornered me at my desk. Maybe. It would have very much dependent on the level of my hangover and my own induced vulnerability.

These days however, I am a sucker for charity. My circumstances make it so. Macmillan, Myeloma UK, Cancer Research UK. They are all getting my cash, I do not have a lot, but I figure they offer the minute possibility of making my life better, so, where is the price tag on that? I have the credit card for shoes.

I have always given money to charity, homeless and addiction ones specifically (and still), because I felt guilty walking through St James’ Park everyday enjoying the scenery whilst people were ruining my view by sleeping on the park benches with their bottles of White Lightening. My reason for donations to charity have always been selfish, always based on making myself feel like I was doing something without really having to do something. I am sure most of those donating last week to our BBC telethon would emphasise. Begrudgingly. Your donation came not because primarily you wanted the world to be a better place, but because you felt guilty because your life was better than what you were looking at on your TV screen.

Until My Myeloma happened, I would not have given my money readily to a cancer charity, even though I had lost people to cancer including my beloved Grandpa. Many Christmases ago, I saw the Macmillan nurses come into my house and I did not care. They were not changing anything. At the time, all I thought was that my Grandpa was dying and the ladies who were coming in to change his dressings were mere window dressing. They did not change the end result, so why did they matter? People die from cancer. I associated cancer with old people, old people like the beautifully stubborn Scottish man I was lucky enough to call my Grandpa.

These days, unfortunately, I have to pay attention. I bet if you know me, you probably pay more attention now too.

The adverts on the television, the adverts on the tube, the adverts in the paper. They are designed so that people cannot forget about cancer. Cancer, cancer, cancer, cancer. Cancer. People get it. Apparently one in three do, but I guess not many of them are 28 years old. Do you want to feel sorry for us? Well, tough luck if you don’t, because the advert on ITV3 tells you that there are many people who drew the shit stick and apparently a cure is coming. It’s only coming if you give us your money. Do it quickly though, for the next ad break is in 15 minutes.

If print could be white noise, the cancer charity advert, in all it’s guises cannot now be blanked out. At least I cannot blank it out. It is everywhere. I have cancer, so I am bound to see it, Until I got cancer, I never heard it. I definitely didn’t see it. I never heard ‘cancer’. I saw the words and my association with it was, well, distant. We all know cancer is bad, but if it is not in your life, then one does not need to worry about. It won’t effect you. We know it happens, we hear the stories, but if you can carry on going to work everyday, see your family, then the connection, the empathy, is distant.

Until….

That’s right, until it happens… Until you are lying in a hospital bed and a doctor changes your life.

I hate the adverts.

I want all the cancer charities to have all the money they need. If they need a never ending pit of dosh, then they should have it, whether it is a charity supporting those with cancer or one trying to find the cures. I just wish that you did not need the reminder. Your reminders, remind me that I am not normal. That I have cancer, and that there is no cure. Your reminders tell me that not only do I need this special support and that there is no cure, but the people I love because they love me, need support. Your reminders tell me that I cause pain.

Today, I got the tube for the first time by myself since my diagnosis and my enjoyment of that was taken away by the fact that people needed to be reminded. I saw the advert. I just wanted to rejoice in my independence, but all I got instead was a reminder that people get cancer. Including me.

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Maybe one day, such a crude interruption into one’s life will be superfluous.

Please let it be in my lifetime.

EJB x

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The Cost Of Cancer

Once you have processed your diagnosis and your treatment, it is unfortunately necessary for one to deal with the life admin. Despite being stuck in this inexplicable twilight and having to come to terms with a diagnosis and prognosis, which is beyond unfathomable, I have had to learn that life goes on. Everything that existed before, continues to tick over. Bills, pay, money, living costs; these things still continue even though you have cancer, and they have to be managed because you hope at some point, having a bad credit rating will matter again.

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I have probably spent three months with my head stuck in the sand about much of this. Coming to terms with My Myeloma was enough to manage, without me beginning to consider how I could and can financially survive, maintaining my much needed level of comfort, whilst trying to survive within this bubble of cancer. I am now at a point where I have to deal with my finances. Cancer costs, in more ways than one.

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Thankfully, I am in a better situation than most. I am an employee, and my employer does take care of people like me and even others, who could do with a healthy dose of humble pie. Last week I had an occupational health referral and the lady on the other end of the phone was most perturbed, to begin with, about me continuing to do work when I feel able to do so. It did not take me long to get across the importance and weight my work means to me in my life. Continuing with some normality, for somebody who has had a job since they were 11 years old. In those early years, staking shelves really was a hoot. Continuing my work is not just about my sanity, it is also about me, continuing to give back and support those I respect. Despite me winning her over, or appearing to win her over, there is still a high probability that in the new year, I will move onto half pay. Six months really can fly when you are not having fun. I live in Dalston and I am a civil servant. Half pay will cover my rent and approximately two third of my bills. That’s it. It will not cover my food, my online entertainment services and my occasional acts of generosity. It would be a fair assessment to say that I have discovered Ocado and high end branded teabags at the wrong point in my life.

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Ever the pragmatist, this last week, I have started to investigate what Government funds are available to me. Once again, Macmillan Cancer Support have shown their worth in this area. For somebody who has never claimed any benefits, it looks and reads like a whole load of gobbledegook. I suspect I work in the right Government department, because the Department of Work and Pensions would be lost on me. I am surprised so many people are actually in receipt of benefits. The forms are endless. Take the Disability Living Allowance, the form, for which I could get Β£20 per week, is 42 pages long and has to be accompanied by evidence that I am sick and a list of things that I can and cannot do including the number of meals I can cook myself in a week. Crucially, microwaveable meals do not count as cooking. Phew. I am also going to apply for a Blue Parking Badge, just to save my legs and back on the occasions when I am am able to go to a shop and somebody has a car. Then the worst case scenario, is applying for Housing Benefit, if I do end up on half pay. I haven’t even begun to look at that form yet. Thank goodness for the welfare state.

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When I was first diagnosed, I thought I would end up saving money. In reality,this has not happened. I took a slight pay cut because I am not able to do some add on work, and in these dark times, sometimes, just sometimes, I just need a little pick me up. Some lipstick, some food or a taxi. Just things to make my life easier and keep me sane. I imagine these little perks will have to stop in 2013.

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Everything costs. Everything.

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Just keep paying your taxes people, because out there, there are some people like me, who actually need the help, and I am not even thinking about the NHS right now although clearly, I need that little beauty too.

EJB x

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