Tag Archives: work

Hofmann’s

There are a few things I miss about the 7’s. I miss engaging my brain. I miss that most of all, almost everyday, but I have found a way of thinking about it in the abstract. Your job is elsewhere. Watching Inspector Morse is a job. When I worked the 9-5, I might not have looked like Dolly Parton, but I like to think I was pretty good at it. When I doubted that, I had my annual review, which did nothing to curb my ego. Unfortunately, engaging my brain in that format is not an option for me right now, it has not been an option for me since I relapsed. It’s taken more than not getting dressed at 07:00hrs to get used to it. It takes a lot to not feel useless.

I have had to retrain my brain. My priorities have changed. When I was a teenager, I worked for a water sports park and I loved it. My loyalty to that place by the railway line became a running joke amongst my friends. It was my love. I then got a ‘grown up’ job and I loved that even more than my job before and my loyalty passed on. Anybody who has read this blog from the start, would know how much I loved my job. I saw my place and I felt supported in it. Said job did not account for all of me, but it was my contracted 37 hours a week, and everything else that went with it, and I was quite happy with that. More than happy. It led me to discover the Growler. Then something happened to curtail all of that. It’s called a relapse. Everything that I did before June 2014 on this subject and the loyalty I felt, now, feels misplaced. Blood cancer is chronic. Chronic gets boring.

My major form of daily engagement halted, indefinitely, and so too, with my current treatment, did a reasonable expectation to return to that daily or temporarily regular engagement. Realising this sad fact, meant that I have had to turn off my senses that would be attracted to certain things in the news. My news now seems to be limited to the Daily Mail’s gossip column and Sight and Sound magazine. For a long time, at least it feels that way, I have not thought about my employment in any way other than what the financial implications of not doing it has on me, or with the anger associated with me not being able to do it .

Since the relapse, that work community I thought I had created or become apart of in my adult life seems to have all but evaporated. It’s rather difficult to think that the world that formed at least 56% of my waking hours prior to my diagnosis and the one I worked so hard to hold on to has paused, but that is the truth of it. That percentage is a crude minimum by the way, created after discovering the calculator on my iPhone. I thought about it much more than that.

Last week, I found myself driving past somewhere, that brought back fond memories and the familiar stories of sitting in a hotel bar finding out far too much about a person who gave far too much away. In turn, I was reminded about other things. Even my language. I doubt I’ll be released from hospital now.

I mo longer walk the 7’s. I no longer get to experience the benefits of working on the 7’s, which ultimately means cruising by the local pub on my way home. I no longer get the 07:35 to Wakefield. I no longer have colleagues. That’s 37 contracted hours a week gone, along with all the benefits of those hours.

It might be one of the hardest adjustments I have had to make… I’m not responsible for anything other than myself anymore.

When all faith is gone, there are days when people come and claw back some of my faith in humanity. Humanity is better than an organisation. It doesn’t take up the 37 of my hours, but it gives me hope that I may see some incarnation of that 37 hours again. Whether it is the in the form of a grandmother from the West Midlands who buys me sherbet and shows she cares above and beyond what she is supposed to do, a troupe of people hitting the Railway Tavern, a couple of people who shout ‘UTB’, a man who reads the Guardian Culture section and sends me the articles because he thinks I would like them or somebody who still plays Word With Friends with me almost everyday, and they do so without needing anything in return. These people make me think a return is possible or at least, they make me think I left my own little positive imprint before Myeloma hit. At a minimum, they do not make me think like I wasted the best of my adult years, which is how I have felt many a time during this long winter. They make me think the person who hired me was not a fool, and I am pretty sure she isn’t.

When all else fails, when the negativity takes over and you think you have faded into xxx history, one gets a special delivery from Wakefield. Not just any delivery, but one from the special place called Hoffman’s. A pork pie and a packet of pork scratchings. How I missed this.

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It doesn’t heal all wounds, but it most definitely fills a hole. A big gaping hole.

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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Yes/No

In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.

The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.

Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.

Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.

It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….

And now, I boast.

A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.

I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.

The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.

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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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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Release On Temporary License

I am free. I am free. I am free.

Well, for the next ten days I am free. I am free of drugs. Free from treatment. Free from extreme lethargy. Free.*

I have been released from my treatment prison on temporary license for ten days. Ten whole days of feeling as near as possible to the Emma Jane Jones I like.

It all boils down to energy and having it.

I will make the most of my freedom while I can because I know that on 26 November it all starts again. My week ahead involves friends, cinema, work, friends, family, arts and crafts, friends, baking and films. Bliss.

Ever the sensible one, my home curfew has been set at 22:00hrs.

EJB x

* I do have to go into the clinic on Wednesday for my end of cycle consultant appointment, during which I will discuss my future treatment options given my disappointing response thus far. I cannot wait for that. My previous sentence was a lie by the way.

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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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