Monthly Archives: February 2014

Selfishness

Myeloma stands accused of being selfish. It stands accused because it is selfish. No trial needed. Myeloma dominates and myeloma leads. I can sit here and tell you that it does not do those things, but I would lying. I have been accused of being selfish because of My Myeloma. I have also been accused of enjoying the attention I get from myeloma and enjoying it to the detriment of others. Unlike my statement about myeloma, which is a bloodsucking selfish bastard with a low public profile, I do not think the same can be said for me even if I am tooting my own delightful horn.

I think we are all, to some extent, selfish. I do not think selfishness necessarily makes a person horrid, and with that, I justify my existence.

People are always going to concern themselves with issues of self, no matter how much time they concern themselves with the lives of others. Before I was diagnosed, I estimate that there was a 50/50 split in terms of how much I loathed myself and how much I loved others. In treatment, post my diagnosis, that even split was unattainable, and I concentrated my thoughts on myself more and more. I wish I had the capacity to support others the way I know I am capable, but in treatment, I was not capable. Of course some of the reciprocal arrangement that is friendship remained, just, I deduce, to a lesser degree. Myeloma did not make me wholly incapable of multiple thought, it just makes it difficult to execute them.

I regret this. I had to prioritise. I am somewhat ashamed to admit it, but I concluded that my need was greater than others. I developed a crude, patented formula, in which I multiplied tales of woe and illness with the chances of remedy then divided it against personality, and in almost every occasion, I was top of the table. I love my Support Network, and I tried to maintain balanced friendships, but inevitably, some things went a little skew-whiff.

I am not saying that myeloma is the worst thing that can happen to somebody, but it is pretty high up there on the scale of awful things and that required most of my attention. I may sound entitled, I do not mean to and nor do I wish to be, I wish that I did not need to gather so much of my attention on myself, but that is the way it is. There was a time when myeloma dominated everything. I understand why people would get frustrated by it, I did do, and unlike everybody else, I had and have no respite.

There have been occasions when my formula has assessed that somebody else’s need for understanding, thought and love was greater than my own. Like My Myeloma, I see that the pain of what they have gone through or are currently have to go through, which cannot be taken away or absorbed. It’s excruciating. It is easy for me to forgot that other people experience grief too and unlike many things in life, there is no immediate remedy. I wish that the world was not like that. I imagine that for them whatever it is they are going through, becomes all consuming and everything that happens in between is play acting, despite whatever will there is for it to be real. In these circumstances, I hope I can show what a friend needs to show.

I have devoted a lot of thought recently to my selfishness and by default, how this has influenced the way people view me. On the one hand, I do have less sympathy for others, on the other hand, I empathise more with others. I believe the latter makes up for any deficiency gained from the former. I love more and I care more. I might not show it correctly, my myeloma may make it impossible for me to show it, but I do. My life is too short for anything else.

Myeloma has many downsides, many ways in which go ruin a life. When jt comes go my empathy, and how I care for others, I think myeloma has made me a better person. It made me prioritise. Of course view is somewhat one sided, I’m thinking about my self.

EJB x

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Priorities – 2014

The following is a perfect example of my personal planning requirement.

My priority in 2013, which led to me rescheduling my stem cell harvest, appears to remain my priority in 2014.

Do you know how I know this? I give you exhibits A and B. I believe, they speak for themselves.

AThe Request

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BThe Response

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Boom! I will go to the ball.

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Velcade Fatigue

I spent most of my Sunday wondering why I was so tired and then getting mad that I was so tired, before I went straight back and wondered why I was tired. In itself, that process is an episode in exhaustion. The exhaustion of which I speak is relative. It compares not to the Steroid Crash, but remains the worst of what I experience during this volume. It

In my mind, there was no reason for the exhaustion, after all, I am being very sensible and adhering to my rule of having a limited social life with so many early nights that I am becoming predictable. Predictable and reliable that is me. I am all about establishing a regime. Even the Costa Coffee Man asks me about my regime. The Regime permits me to live a reasonable life and secondly, judge when something is going wrong. I think I am getting good at it. At least, I was last week anyway.

Last week, I wanted to punch the air when I realised that I had done a 31 hour week, with three evenings of sensible socialising and a day at the hospital. That is real progress. I am with me everyday, so it is difficult to see when I am getting stronger, but even I could see that by close of play Friday, I had achieved something special. I was even told I had more colour on my face, so, get me and my makeup skillz.

In order to achieve such jubilation, I do have to very carefully balance what I can and cannot do. Laziness has to planned. Not seeing my friends has to be planned. I have to plan it all. Last weekend, I had planned to say relax, because my week had been so jammed packed with goodness. Some would say I had written my weekend off, but that would only be the mean people.

Whilst I had planned for rest with my family, I did not plan for Velcade fatigue. When I realised why I was so tired on Sunday afternoon, I was relieved and annoyed in equal measure. I get to see the pattern now, being sensible allows me that luxury. Being sensible does not allow me the luxury of not having a day of tiredness once a fortnight. The reminder.

Being sensible, however, does mean that I can now plan for it. And plan for it I shall. After all, if this is the best I am likely to expect, then I probably should not dwell on it.

EJB x

P.S. In terms of the actions put in place to mitigate the risks associated with another pattern I identified last month, I am happy to confirm that they are working.

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Regrowth IV

Relax! I know it has been a while, but it is fine, you can relax, my hair continues to grow back. My new hair is not relaxed. It is a curly mofo.

I am a cancer stereotype and my hair has returned curly. It is also thick, but that is no surprise, because it was coarse horse hair before anyway. My favourite party trick at the moment, designed to entertain myself and myself only, is to carry pens or pencils in the curls. I might experiment later and see how many I can fit in there. My head is rather large after all, so I predict I can hold at least three. I’ll let you know. Telepathically.

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Mamma Jones spied on these photos yesterday and appreciated the curls

I have been forced to discover that curly hair requires a different sort of maintenance than long, dark flowing locks. Curly hair does not like hair driers, nor does it enjoy being touched in general, which is difficult for me because I am always looking for something to stroke, even if that something ends up being myself. Anyway, both of these activities result in me looking like I have a single block of brown candy floss on my head. I was advised by the Macmillan Hair Lady to treat my hair like I am of a different ethnicity, and that I am doing. I had to do a Google search. This includes liberal applications of oil. Word of warning, do not touch any fabrics directly after applying for obvious reasons.

I am amazed by the speed in which my follicles are growing. As an exercise in narcissism, I just looked at some photographs of myself from the start of January and I am surprised by the growth. It’s a talking point. I can guarantee that somebody will mention it to me today. They’ll be surprised by the curls, just like I am. I will then have the same conversation with another human being. Mind you, better they comment on my head that my weight gain. Gross.

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Until Part V, this is Hair News signing off.

EJB x

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Parental Guidance Advised

For a good long while now, I have avoided a certain sub-genre of entertainment, because I do not find it entertaining. If I were to watch such entertainment, my viewing pleasure would be severely reduced by the very likely chance of me leaking snot on my clothes whilst my eye makeup melts down my face, imagining my end whilst feeling wholeheartedly ashamed of myself. The BBFC may have their ratings system, but I have and need quite a different one that is not determined by how many nipples I see or how many times Leonardo DiCaprio days ‘fuck’. Mine is about self preservation. It is for this reason that I still do not know who Walter White is, which prevents me from making knowing on trend pop culture references in my daily conversations.

The motion picture, and in this, I include the images received on the tele box, because that, apparently, is where real filmmaking creativity can be found in this modern world, is a form of escapism. Sure, it is not always a barrel of laughs, and it can be challenging, but it temporarily takes one away from their story, into somebody else’s. Unless you are watching Panorama that is, but I do not watch Panorama, so I can make sweeping comments like the one above. As Lina Lamont says, films can bring a little joy into our humdrive lives. I have found since August 2012, that my need for and enjoyment from other people’s stories has been greater than ever, and I really enjoyed them before myeloma happened. Now though, these stories cannot feature somebody with the ‘C’ word or dying from the ‘C’ word, for if it does, my enjoyment is severely compromised.

I am aware that a blanket ban on anything mentioning cancer is impracticable. Cancer, as I have discovered, is everywhere, not just generally, but hiding in programmes one would I assume safe. Take last year’s Oscar night coverage, when I wanted to be looking at the red carpet, feeling emotional that I am maintaining a tradition, one of the presenter talks about her cancer diagnosis and recovery invoking jealously and a swift return to my realty. Even The Sopranos can be ruined by a supporting character dying from lung cancer in prison. And my childhood favourite of Beaches has been vetoed forever, and it’s not just because I have taste now.

Apart from the fact that any reference to cancer reminds me of my personal situation, the problem with cancer on TV or in movies, is that the depictions are unrealistic and I buy into that, imagining the best or the worst, whatever they are serving up for their willing audience. Films are either so incredibly sanguine, cutting from a breathless deathbed conversation to an image of a coffin soundtracked by a power ballad, which is there to tell the audience that now is the time for them to legitimately cry, or it is unrealistically jovial about the treatment, the side effects, the timescale and the recovery. They paint false ideas of what it is like to have cancer. They don’t paint my story.

So, you can see from the evidence above, that for my mind’s sake, it is best for me to avoid the ‘C’ word when seeking a temporary respite from the reality of living with it. That is why I have developed a ratings system, so that I and my friends can know what it is safe and what is not safe. I think there are still a few tweaks to be made, but you’ll get the gist.

UUniversal
Films/TV can include, mass death and natural disasters like Dante’s Peak and Independence Day. Not like The Impossible. Also includes, any of the Lethal Weapon franchise despite the grief in 1- halfway through 3 and Back to the Future. Will also allow Disney/ movies, bar Bambi and Up.

PGParental Guidance
Films/TV can include murder stories with minimal to no mourning, definitely no funerals, to include Midsomer Murders or Jonathan Creek . All of Alfred Hitchcock films and Gosford Park.

15Suitable for people aged 15 years and older
Films/TV can now be set in or be about people who work in the medical profession. If I watched Casualty, it would be shown after the watershed. Grey’s Anatomy is also permitted. Films that depict traditional multi generation family structures, for example, Parenthood, are permitted. Films about pregnancy, including Arnold Schwarzenegger’s underrated masterpiece, Junior. Crying to be expected.

18Suitable for people aged 18 or over, contains cancer themes.
Films/TV will include somebody dying of cancer, showing grief of loved ones, people being diagnosed with cancer and then discovering who they really are before it is too late/atoning themselves before the angels come to get them. Can also include films with a happy final scene, showing people smugly smiling whilst thinking of their deceased loved ones whilst looking at a flying bird. To cover certain episodes of House, any soaps if I were to watch soaps, and any of the awful cancer films listed when I googled ‘Cancer Films’.

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Is that clear now? Good. Macmillan need to produce a leaflet.

As I said, sometimes, you just cannot avoid it and this is a situation I found myself in last week, which coincidentally, inspired this blog. I somehow, found myself watching a little French/Belgium production that told the story of a human being with a blood cancer (thankfully not myeloma), dying whilst having an allograft stem cell transplant, and then the last half of the film showed how the death ripped the grieving love ones apart resulting in the suicide of the dead person’s mother. It did not say that would happen on the synopsis. Films like that are my Cannibal Holocaust. Films like that keep me awake at night. Needless to say, I did not find it entertaining. I had to watch a Miss Marple to take the edge off.

And so, I wish you all Happy Viewing, remember, these classifications are there to help you. Be vigilant.

EJB

P.S. I might make an exception for 50/50, which is realistic, despite my own personal jealousy at the happy ending. It is also a reasonably good film.

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The Littlest Things

Yesterday, I decided it was high time for me to tidy my drawers, because I Housemate did his, and I felt like even more of a sloth than usual. I would like to confirm that I am lying in my bed as I type and I can confirm that
I am glad that I took the time and energy to do this. As I was doing the deed however, my emotions were mixed.

My drawers are a set of six, which sit to the lefthand side of my bed and house the things that do not need to be on show. Catch my drift? There is a jewellery drawer, a make up drawer, one and a half drawers of mementos, a draw of toiletries and other things one can purchase from a chemist and the remaining drawers are (were) drawers of crap. The whole clean up accounted for one dustbin bag full of crap.

As, I opened the third drawer down yesterday evening, I found something, or should I say, somethings, that I have not required for a long time and consequently forgotten were in existence despite them coming in a range of sizes and brands occupying the majority of the drawer. It then dawned on me, that I would not require them ever again, and as I thought about what not needing them ever again meant, a teeny tiny tear fell down my face. And then a few more followed.

In this strange remission world, especially in the one where I try and remain positive, I avoid thinking about the things that have changed since I was diagnosed and the things I have lost since I was diagnosed. Sometimes unfortunately, even when you are doing the most practical of things, they just creep up on you, at least they do on me anyway, and when that happens to me, all I can do is give myself a minute or five (ten).

I gave myself five minutes to think that I will never again be caught short when out and have to ask a female friend or worse, a female colleague,
an embarrassing question. I gave myself five minutes to remember what it was like for my body to act like clockwork every 29 days. I gave myself five minutes to curse the hot flushes. And I gave myself five minutes, because all of the above means that I cannot have babies.

I then cursed myeloma.

Once composed, I stared into the drawer some more before I scooped up the contents, which included two half full boxes of the same thing, and put them in my black bag. I then left my room and was told about some of the benefits of not having to stock up in Boots every month.

Other things in the drawers that also contributed to a wee bit of insomnia and yearning for a simpler time last night, included;
• Hair bobbles (I thought I had dispossessed of them all)
• 2 x paddle hair brushes containing long brown hairs, which I felt the need to finger
• Prophylactics
• Old photographs

On the plus side, I was reminded that myeloma has significantly increased the quality my remaining toiletries and thus, I am unlikely to need to purchase any moisturiser any time soon (shower gel and bubble bath on the other hand…).

EJB

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