Category Archives: Work

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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Working With The Man

What is this? I have a laptop bag, a Tupperware full of soup, a lanyard in my handbag, I looked out my clothes last night, there is a meeting in my calendar and I am two hours later than I intended… I must be going to work today.

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Lustful excitement

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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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The Work Christmas Party

I have stayed out pretty late for me. I walked through my front door, after stepping on the dishwasher salt at 23:15hrs. A sign of Prior Planning and Preparation, I dare say. If I wasn’t coming home to a blocked toilet, it would have been almost perfect. Tonight was my work Christmas party, and by some freak of PADIMAC, I was able to go. Yes, man.Let us thank the person who gave me a cold in Cycle 2; if it were not for them and the consequential week’s delay in treatment, I would not have been able to go.

I would like to tell you about my work Christmas party last year, so you have some sort of comparison, but that would be indiscreet. Needless to say, I had a few jars, had a day off the next day and it was fun. Oh, and I lost a red hat from a market in Helsinki, which still haunts me to this day. Tonight, I was clearly no longer the life and soul. Maybe it was big headed to think I was previously, there’s a pretty nice girl from the north who would give me a run for my money I am sure. I am now just a girl who makes people well up when she talks to them. Fortunately, I am used to this, and can hide any reciprocal waterworks pretty well.

I enjoyed myself today. Seeing the faces, talking nonsense and indulging in an alcoholic beverage. I felt normal. To a limit. My absolute longing to get back to normal, which would mean walking on The 7s tomorrow with a stinking hangover is palpable. En route home, after my taxi dropped my friend off at Embankment Station, it dawned on me that my limitations are omnipresent, and I burst out crying. As much as I try, it is not the same. I say it all the time, but being normal is beyond difficult. I could just live in my flat and clinic bubble, but I know that going out and trying to be normal is always going to be the lesser of two evils regardless of how much it hurts. Try or give up. I know which side my bread is buttered.

I like to think that my sadness is because I know that deep down, beneath the paraprotein, the Emma I know is still there and she is fighting to survive. She wants to tell a joke where cancer is not the punchline. As much as I enjoyed my night, it made me want my life back. I want my life back. For emphasis, I want my life back. Everything is a shadow of what it once was and I am in limbo. At every opportunity, I want to grasp hold of the normality and not let go but that’s not possible, and when it goes away like in my taxi this evening, it makes everything so far beyond bittersweet I want to feel the pain in my rib.

*Must remember that I enjoyed myself.*

On a lighter note, since my diagnosis, it would be fair to say that the people I shared floor with every weekday have been amazing and surprising in their support of me and my fight. Here are two of them, wearing a Christmas headband, because that is how us civil servants roll… We. Are. Crazy.

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Night, night. It’s okay, tomorrow, I will wake up and I will be all about My Myeloma, not dwelling on the whatever.

EJB x

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The Buckingham Arms

Today, I have managed to dig deep, dig real deep, and I have found something called energy. Eleven hours of energy to be precise. Champion. If I have said it once, I’ll say it a thousand times, I bloody love my week off treatment. Sure, I anticipate being a little sleepier tomorrow, but at this current moment, as I lie in my bed, I think it was worth it.

At approximately 10:20hrs, I climbed into a taxi (literally climbed) destined for my office for one and a half meetings. At 10:50hrs I arrived and there I stayed until 17:00hrs. I did promise to leave at 15:00hrs, but it turns out that I cannot keep promises. Sorry.

I could give you a blow by blow account of my day, but it is restricted. Needless to say that I did some work, spoke to some colleagues and I felt almost normal. Cancer was discussed, it always is, but if we take that out of the equation, I felt almost normal.

At 17:00hrs, almost out of habit, I ventured downstairs, left the building and wandered down to the Buckingham Arms. I am not going to lie to you, I am no stranger to this pub. I dread to think how many hours I have spent inside it or how many more I have spent standing outside it with a Kronenberg looking down the one way section of Petty France. As is my current norm, today I did not order a Kronenberg, but a Bittburger Drive. Like my pre-Myeloma life, I went in for one and I stayed for four. Middlesborough kindly put me in a taxi and I finally arrived home shortly before 21:00hrs.

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It was a good day.

Like all good days, I have to force the anger that days like this are an exception and not the rule out of my mind. It creeps in. It’s creeping in now, but if I dwell on the fact that I have had a good and long day, it’ll make me feel sad. I don’t want to feel sad, so I will end this blog now.

Night night.

EJB x

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Status Quo

Since my diagnosis, I have imagined that my life pre-diagnosis would be put on hold for me to resume when I am better, when My Myeloma is in its deep, deep hibernation. I am realistic enough to know that small stuff may have moved on. Friends may be in new relationships, out of old ones, new current affairs will impact on my working life (and social life for that matter), and VAT may have increased… The big stuff however, I hope or did hope, would be there waiting for me to pick up, when the time is right, just where I left it on 14 August.

I am coming to terms now with the fact that this security I have been clinging on to, so, so tightly, may have been unrealistic.

I would like to get into the nitty gritty of it all, but alas, I may be in the midst of steroid rage, so what has in fact ruined my day today, may not of in fact ruined my day tomorrow when the chemical imbalance is no more. It is hard to tell.

At this current moment, as I lie in bed waiting for my friends to come round and cook me dinner, I am frustrated that things have to change and things have to move, and I cannot move on with them, because for the time being, I have cancer.

I just don’t want anything to change. I want my life to remain the same, by same, what I mean is pre MM.

Uplifting.

EJB x

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Working That 9 to 5

For all those people dreading going into work tomorrow and doing that 9 to 5, remember all those people who cannot go into work but really, really want to. For all those people dreading going into work tomorrow and doing that 9 to 5, just look at how happy I was to go into my office for three and a half hours today…

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… To confirm, I definitely did not need to nap for an hour when I got home, nor did I forget to eat lunch.

I love working. I love work. I love that I have actual work to do. I love almost being normal.

My brain says “yes

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IT Fail

For the last two weeks, one thing I have been looking forward to is starting working properly again this week. It has been a target of mine, a way for me to return to some sort of normality. My mentality is childish, it’s essentially ‘I may have cancer, but I can still do work, I’ll show you My Myeloma. You will not take my brain away from me.’

My work are kindly providing me with a laptop with secure connection so I can work from home and two weeks ago, I received an email to say that my laptop would be delivered to the London office in 5 working days. Thus, I happily put a date in my diary during my ‘off week’ to go into the office and collect. Although it is only a laptop, in my mind, it symbolises some sort of freedom from My Myeloma. Today, however, I found out that the IT provider had stalled the order and I now have to wait another week until the device is in my hands. I am sure a week means nothing to them but to me? I am swear word livid.

I know it is only a week, but I feel like it is a set back. I am ready now. I am ready to get back to normal.

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The Macmillan Coffee Mornings

Today, in offices across the country people participated in what Macmillan Cancer Support billed as ‘The World’s Biggest Coffee Morning’. Given my recent diagnosis, my office was one such office who participated and I am truly thankful to Laura, Cathy, Middlesborough and all the other bakers who contributed and helped to organise the event to raise money for Macmillan. I am also truly thankful that my body decided to have a normal immune system, so that I was able to get myself to the office and enjoy a cuppa and cake with them. The fact that my body was behaving (ish, I have no idea why my pain is worse this week) meant that I was able to show my gratitude in person, and, ssssh, I had spent the week willing my body to allow me to attend. I even made my own little contribution to the baked goods with an overly crumbly banana and chocolate cake.

Since my first day of treatment, the support I have received from Macmillan has been incredible. Before I entered the Macmillan Centre at UCH, if I am honest, I really had no intention of using the Support Centre, I don’t know why I thought this, maybe I thought that I had enough support already. Now, I find myself going in to see the suppor workers whenever I am in the Clinic. My friends have been there with me and one described it as a ‘sanctuary’ and for me, it is. At least once a week, I find myself going in there for my own little coffee morning, except I don’t like coffee so I have a cup of tea instead. The people who work in there make me feel better, they are now another part of my immense Support Network. I have taken full advantage of the services they offer, which includes relaxation therapies, wig fittings and the scarf tying lesson. My counselling is also organised via Macmillan. So, essentially, what I am saying to you, is that Macmillan deserve all the money they can get. They make my days better.

Back to Our Coffee Morning and to other people who make my days better… The morning was a roaring success. So many people came to the ground floor, ate cake, drank tea and donated. It was also a perfect excuse for me to catch up with my colleagues and anybody or is anybody knows how much I love a chat and the opportunity to talk about myself. It was brilliant and crucially, they achieved what they set out to do and that was to raise money Macmillan. The final total was a rather respectable Β£372.04 and a franc. Good work and thank you. I really need to find another way of saying thank you.

Now, I kissed a lot of people today. All I am saying, is, you better have been healthy.

In case you do not believe me, below is photographic evidence of the super fun morning. Yes, I have become a person who enjoys a coffee morning. I blame the myeloma.

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Meanwhile, in Lincolnshire….

Big Sister and Mamma Jones also organised coffee mornings in their offices. Their events even featured in the local paper. Get them. Big Sister raised Β£115 and given the size of her office, this is more than credible. I don’t need to thank them, I like to think they intrinsically know what it means to me. Check out this cake display:

Spoilt Narcissist

Some people manage their diagnosis with dignity. I have chosen to manage mine by writing a blog and talking about myself all the time. I tell myself that it is cathartic and not in the least bit an attention seeking device that forces people to spoil me. Who am I kidding? I have become a spoilt narcissist who continues to be astounded by the generosity of others. That’s My Myeloma.

Many thanks to the work folks for the following (whoever selected the antiseptic wipes…score!):

EJB is one happy narcissist.

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