Tag Archives: assistance

The Cleaner

It may surprise many of you to learn that despite my current financial woes, I continue to employ the services of a cleaner. The cleaner comes fortnightly, and her services are paid for out of my disability living allowance. It is a necessary extravagance and it is an extravagance that I look forward to and loathe in equal measure.

My excitement at having a clean house at the end of a three hour visit is obvious. The awkwardness that I encounter for the duration of that three hour visit is almost enough to get me on my hands and knees attempting to dust the skirting boards. Almost, I cannot get on my hands and knees to dust the skirting boards. There has been an empty bottle of water on the floor in my kitchen for two days, which I have been unable to pick up. I really hope she spots it today. Imagine what would happen to me if I partook in continuous exercise below the waist. Imagine indeed… At best, I would be a moaning minny. At worst, I would be on the Oramorph demanding another X-ray.

Let us face it, I also have a strange middle class, but on benefits, guilt of paying somebody to come and do my dirty work, whilst I lie on my sofa watching TV. I am lying on the sofa as I type this whilst the cleaner cleans. She’s two metres away from me making a vigorous scrubbing sound by the kitchen sink as I snuggle into a cushion tapping into my iPhone. I should really move into my bedroom now, but my back hurts, so I am multitasking, working up the courage to stand. She does not know why I am on the sofa snuggling into a cushion. What must she think of me?

A fortnight ago I made a point of taking my medication in front of her, and left a few boxes of drugs out in my room, so she could guess there was more to me and my story than a fat, lazy and inept housewife. That is what having a cleaner makes me feel like, apart from the housewife part. I am no a housewife, as the rotten vegetables in the bottom of the fridge are a testament to.

There are days when I would love nothing more than to be able to clean my own flat. I am in no way exaggerating. I am not saying I enjoy the act of cleaning, I would just like to be able to do it. For well over a month I have needed to adjust the valence sheet on my bed, it is a task I yet to complete because it involves lifting my mattress and I struggle to lift up my Le Creuset. Consequently, I feel like my bedroom resembles a squat with it’s exposed divan and collection of syringes.

Life is tough. Real tough.

My cleaner does not know that I get up early before her visits to make sure things are as tidy as I can make them, that the bedding is clean and dry and the dishes are put away, nor does she know that these activities tire me. She does not know that I do a disproportionate amount of dishes in my flat to make up for the fact that I cannot empty the kitchen bin.

Nobody tells you that this is a side effect of myeloma; uselessness.

I do feel quite pointless right now. Thank goodness I know that I make the mess and dirt in the first, otherwise I would be lying here questioning my very existence.

I just want to get under a blanket and snooze. Goodness knows how I am going to manage this in a fortnight’s time when I am crashing on my steroids and unable to get out of bed. The experience would be so much worse if I am in my pyjamas. There is nowhere to hide.

What is the etiquette when nature calls when it does not call that often? Heavens above.

On the plus side, for all the awkward and critical feelings I have right now, I know that in an hour’s time, my bed will be changed, my flat will be clean and there will be a lingering smell of bleach.

Before that happens, I have to get over the embarrassing issue of payment. I believe some people would refer to my concerns as a ‘first world problem’. My riposte would be, ‘myeloma’.

EJB x

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Priority Seats

Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.

I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.

Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.

Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.

Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.

If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.

For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?

I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.

Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).

I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?

Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…

Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.

Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.

More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.

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Of course it is ‘ruddy hilarious’ when you don’t need a priority seat

I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.

EJB x

P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.

* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.

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Invincibility

On Tuesday, I had to drag my sorry bum to London Town for an appointment at the hospital. I was not looking forward to it for the simple reason that I did not know whether I would physically be able to manage the journey there and back again. I had been dreading it since the day of my discharge. It was going to be one long afternoon. Fortunately, I had an escort.

It would appear, that for the time being, I once again need an escort for all activities in public. If I am honest, I like to know that somebody, whilst leaving me alone, is in shouting distance when I am in private, so for outside world… The outside world is once again, a scary, terrifying place. Avoid it for a month, without a medical procedure and see how hot you feel. I’ll let you into a little secret, I got scared feeding the ducks the other day, not because I think mallards are evil, they are not, it’s because I was convinced everybody was looking at me and oblivious to me at the same time, meaning, the general public, that mass being, exists to take me out, to take me down. Danger. On Tuesday, in Kings Cross Station, I found myself wanting Middleborough’s human protection force, which is activated in crowds. It eases the internal panic. The bubble. Fortunately, I had my stick and my Mum. The train itself was fine. That my friends, is called First Class.

Getting dressed, when you have not put clothes on for a while, is interesting. My clothes are still not baggy. I may have felt marginally better than crap when I woke up on Tuesday, but I would be damned if I did not make an effort. Whilst I was making an effort, I discovered that I may now require false eyelashes. I knew I would require a wig. The double hat thing is not for me. I was also reminded of the fact that lipstick gives me power. Getting dressed is a funny thing, it is still my armour; the power of it can be considerable. I arrived at the clinic and I saw somebody who had a transplant the same day as me, and I realised that I, with a wig on my head, do not look ill. I do not look like I have cancer. Still. A lot of people in the centre on Tuesday did, but I do not. It doesn’t make me better or worse than anybody else, it’s just an observation that I do not understand. I am ill, so why do I not look like them? That said, I did enjoy the compliments and I am vain enough to continue wearing a wig in the heat because I want them to continue. Especially because I am still obese. Maybe I have the obesity to thank for my current skin deep, make up assisted, look of health. I still remember last year, when I was diagnosed, I had a very nice doctor in hospital, who failed to recognise me as an outpatient, because I ‘looked so different’. It’s called style babes. Anyway, he recognised me when he saw me a few weeks ago in hospital, in my coton pyjamas once again, after I had just shat out some green goo and was sporting a greyish hue.

The appointment itself was good. That is the point of my story. In fact, my appointment was positive. It was so positive, I could feel my mood instantly shift and hope, somehow magically returned to my being. Hearing the phrases ‘you’re doing incredibly well’, ‘your bloods are almost normal’ and ‘you do not need to come back for a month’, from a Medically Trained Person, made me smile. I do not feel like I have had much to celebrate of late, but hearing that, made me feel better. Hearing that I could go abroad in two months, go to the cinema NOW and that I can ease my strict diet, made me feel invincible. Mamma Jones was amazed with science that my bloods, bar my neutrophils, which are hovering just below 2, are back within normal range. Even my white blood count, which is low, is in a ‘normal range’. Let us hope the paraprotein has not picked itself up quite so quickly. Really.

My invincibility was great. I was dishing out the banter to anybody who crossed my path, I ate a large hot pork roll and crackling without any concern for my welfare, and more crucially, I gulped water. I even had three whole sips of fizzy water. I did it all, because I was invincible. There would be no consequences. So burps, no sick, nothing.

Not nothing baby. Do you know what happened next? I got tired. All so very tired. My bloods might be getting back to normal, but my fatigue is still around. It’s here and it can take me down very, very quickly. I was told during my appointment that this will remain for a while yet, and I still have to give in to it. I just temporarily forgot. I also forgot that drinking still makes me nauseous, but there is medication for that. I believe, halfway back to Peterborough, I crashed. The crash is not me being a wee bit sleepy, a crash involves my head becoming heavy, my body aching, blurred vision and adopting the walk of an OAP thirty four years after the point they officially become a senior citizen. In Toys’R’Us I could barely stand and by Tesco? Well, I wanted to vomit all over the public. On my return home, I got into bed fully clothed and fell asleep, and I spent most of yesterday in bed too, with a brain full of mush. I expected as much. My nurse was correct, I am going to get frustrated by my fatigue, but for the moment, there is a balance to be made and I still need to accept that.

I mentioned the other day subtle changes. Stay in your seats, but on Tuesday morning before I went on my adventure to Euston Road, which I never want to see again, I managed to walk up my parent’s staircase (my room is downstairs, so it is not something I do everyday, I’m just setting the scene, like I said, stay in your seats) and I did not get tired until I reached the top. That would not have been true a week ago. Two steps made my legs feel like jelly and made me feel like I was in danger.

Subtle changes. I am still tired and I am still in bed, though I am contemplating putting a bra on and moving into the lounge.

I can do anything I want to baby. I am invincible. Within reason. I still cannot drink a lot, nor eat a lot, I guess I cannot stand up for long and my brain is still fried, but, you know, invincible.

Cancer turned me into a super hero.

EJB x

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