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

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.

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.

Constructive Criticism

A few weeks ago, I found myself leaving my flat around 12:30hrs for a hospital appointment. Such is my norm, my chosen mode of transport to achieve this was a taxi. Unlike other people, I rather enjoy the occasional natter with a taxi driver. I should be clear that this is not because I am starved of stimulating conversation, it is just because I like to talk. So, I go in the taxi and said something like “oh, it’s a nice day isn’t it?”. I did this for two reasons, the first is because I am British, and the second was because it was a nice day and it was the first time that day I had seen the shining sun. It turns out, that making these comments was a mistake.

It was a mistake because the driver then spent the next 20 minutes or so telling me that I needed to be more active. Not only did I need to be more active, but I needed to ensure that I was leaving my flat before 12:30hrs everyday and that it was crucial that I continued to keep my mind stimulated just as much as I keep body active. I know, I know, I am missing some key parts of the conversation in which I told him I had cancer. However, I think asking to go to the Macmillan Cancer Centre in the middle of a week day, let the cat out of the bag.

I can take a fair amount of criticism. I an pretty sure that in my early twenties, I was the alway lovely human being you see before you today, so I endured the odd bit of unsolicited insight into my negative personality traits. A lifetime of being overweight, also prepares one for having a thick skin against people who feel like they would know better than me on how I best live my life. These days, in the days of the head tilt and sympathy, criticism levied at me, at least to my face, is surprisingly rare. If I do receive any, I usually let it float over my head like I do with the majority of negative thoughts.

That said, there is one subject, a rather broad subject, that I think nobody has a right to comment on, and that is how I manage My Myeloma. I guess, given the percentage of my life this takes up, I also do not appreciate any critiques on how I currently chose to live my life in order to make it through my treatment.

The taxi driver did not know all of this, it was the first time we had met after all, but what he believed to be a throwaway conversation with a cancer sufferer, I found to be deeply insulting and naive. Above anything though, his comments just really, really pissed me off. I know they pissed me off because I am still thinking about them today and they made me think of other similar comments that have pissed me off since I was diagnosed. It has also made any similar comments made to me since, fist clenchingly annoying. It has all led me to believe that there is one golden rule of people dealing with me and My Myeloma; unless you have something positive like ‘wow, I just do not know how you do it’, or something with concern like ‘how are you doing?’; do not say anything about how you think I should manage my myeloma. You are not me, and as much as I recognise the care the comments stem from, nobody but me lives with it 24 hours a day. Everyday.

Although I sound particularly dogmatic on the subject, it is not because I am ungrateful that people are concerned about me enough to say things that they think will benefit me in my quest to survive. I am not ungrateful. I like to know that people care. The truth is, there is nothing people can constructively say to me about myeloma, or say that is just a blatant criticism of my behaviour, that I have not thought myself at least ten times over and tortured myself at least ten times over in the process. You can be damned sure that the arguments I have in my head about how I should behave, are far worse then anything anybody can say to my face. After more than two years, I have learnt that managing my own criticisms is hard enough and I do not need others dredging them up out of their own altruism, care or in the odd case, meanness.

On one side of the coin, I give myself a pretty rough time about how long I stay in bed, how little I spend in bed, how long I stay in the flat and whether it is sensible to leave the flat. On the other side of the coin, I pride myself on how, despite my many misgivings about the length of time I spend in bed and in my flat, I still manage to get out of bed everyday. In getting out of bed everyday, I also pride myself on how I still manage to hold my head high when I need to stay in bed.

The pride I have in my own behaviour means that any comment or criticism does not just feel like a mere comment or criticism. I feel like it is somebody attacking my core being, something they may have an understanding of, but they will never truly understand because they are not me. In this, I include fellow myeloma sufferers who overtime, have told me how I should feel when I do not feel that way. Once, somebody told me the side effects I was experiencing post multiple Velcade injections could not be happening because they did not experience them. We are not the same. I also include friends, one of whom, I discovered put me through a rather difficult time during my remission because they felt that I had not expressed my gratitude enough for their kindness in my blog. Trust me, for a few minutes on most days I worry that I will never be able to show enough gratitude for the way the majority of my Support Network have been there for me. I did not need the silent treatment when I was trying to move on and up in the real world, to realise this. It set me back.

The most irritating comment is being told to get out of bed or off the sofa and that doing so will make me feel better. It’s not a malicious comment of course, but it is one that seems to negate the work I have done to allow myself to stay in bed. The work I have done to know when I need to stay in bed. I would not have been able to say this a year ago, but I know now that when I stay in bed, it is because I physically need to stay in bed. It is not because I am depressed and it is not because I am lazy. I am talking a lot of drugs and I endure daily back pain.

I am strong, but I am not infallible.

Everybody is always going to have an opinion on me and my illness. Selfishly, when these opinions go against my own, I take offence. I bruise from it and I have been battered enough by My Myeloma to sit at home worrying that others think that they could manage this better than I do. The comments make me doubt myself and they make me doubt how far I have come from the naive 28 year old in the hospital bed on that fateful Friday afternoon.

And do you want to know how far I have come? Right now, I am able to watch a medical television melodrama. I am able to think about my future good and bad and I am able to detach from it when I need to. My next sentence makes no sense, but I did this by myself. I did this all by myself, just with a teeny bit of help and love from those around me.

It’s My Myeloma after all.

If you must criticise something, tell me I need a hair cut or do what Mamma Jones did the other day and tell me that I need to trim my nasal hair. I can take that. Just.

EJB x

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

Fixing a flat

The fox raised its head and looked intently first one way and then another before it bowed its head to stare at something on the ground. It hadn’t seen me apparently, of if it had it didn’t care. I was too far to be a threat and on the wrong side of a barbed wire fence marking the boundary of the plowed furrows the fox had been doing his food shopping on. The furrows were new and many rodents had found their comfy homes wrenched into the sunlight, turned inside out. Their misfortune good luck for the fox.

I stepped back away from the fence and turned back to my car, sitting on the roadside with an augmented list to the passenger side. The lean was caused by the roadside embankment and amplified by the flat front tire. I mumbled a curse and walked to the trunk to get the jack, wrench and spare tire. There was no one on the two lane blacktop road. I wouldn’t have been there either had I not managed to pick up what turned out to be a screw somewhere along the way. It had been shoved, point first, into the tire. I considered this terrible luck. How on earth could that screw been sitting, balanced on its head so that it would get stuck right straight through the rubber as I rolled over it?  There was no answer to my question, it would end up one of the many mysteries of life like why buttered toast always fell butter side down. In the end it didn’t matter. The damn thing was stuck in my tire, the tire was flat, and now I had to change the tire if I wanted to get on with things.

I grabbed the spare tire and knew immediately that it was flat too, there was no firmness to it. I pressed my fist against it and put my weight behind it, and my hand easily compressed the tire. I cursed again and looked up and down the roadway again. This time though, I saw a green pickup truck lumbering towards me. I stepped out into the road and waved my arms, probably looking like I was trying to flap my way into flight. I quit doing it and just stood there, no doubt I’d been seen. The truck rolled up to me, slowing as it approached. I stepped to the side and the driver pulled up next to me.

“Car trouble?” he asked pleasantly. He was an older man, probably in his sixties, gray fighting with his black hair in the salt and pepper look. You could tell he’d been wearing a hat the way the brim had left an impression. I said yeah, I had a flat and my spare was bad too and he invited me to get my tires and come along to his farm. “We can get ‘em both fixed up for ya.” he told me. He shut the truck off where it sat in the middle of the road, and taking the lug wrench from me started taking the lugs off the wheel while I placed the jack and started lifting the car. In no time both bad tires were in the back of his truck and we were in the front, heading to his farm. It was a mile down the road, set well back from the roadway by maybe a half mile. He had twin silos standing guard over a big white barn, the farmhouse settling comfortably in a grove of oak and maple trees. There were a few smaller buildings as well, indicating by their weathered dignity to have been there a while. “Been in the family for six generations now,” he said, apparently reading my mind.

He pulled up in front of one of the smaller buildings and we got out. He drew a big sliding door to the side, revealing a mechanical shop with a fair collection of tools. They all had the same look as the farm. They were old but strong and functional. We chatted about where I was from and where I was going while we pulled the tires from the rims. Both had suffered similar insult, one had a screw in it and the other a shard of metal of some kind. He took a wire brush on a drill and roughed up the rubber on the inside of the tires where they’d been punctured, then he smeared some kind of glue looking liquid on the spots. He pulled a match from his shirt pocket and lit it one handed with his thumbnail. He touched flame to the liquid and it took flame and burned for a few seconds until it began to bubble. He produced a couple of square patches from a drawer and applied them to the now flame-less but smoking rubber, pressing them into place with the backs of his fingers. It was hot, he pulled his hand away and shook the fingers and blew on them. I put the tires back on the rims while we kept chatting.

When I’d finally muscled them into place, he dragged an air hose from where it was coiled on the wall and jiggled the tires as he applied air to the valve stems of each tire. They inflated quickly and stood firm and ready in no time at all. “Good as new!” he said grinning. “Well, mostly, I guess.” I smiled back. As I was looking at him I could also see out the door, and a very pretty redheaded girl, in her teens, was walking our way. Her face was freckled and she had a lean and athletic body that was clothed in a pair of tight fitting jeans and a tailored looking western shirt.I’d been saying something to the old guy when I saw her, and stopped in mid-sentence thinking that was one really pretty girl.

“Who’s that?” I asked him. He turned and looked, a grimace forming on his formerly pleasant face.

“Never you mind her.” he growled. Raising his voice he called out to her to get on into the house. He called her Marcy.

“Is Marcy your daughter?” I asked him. Again he told me to never mind her and pushed one of the tires at me. I picked it up and he grabbed the other and we put them into his truck bed. He waved me toward the door and went around and climbed into the drivers seat. He had the truck moving before I got my door fully closed. He drove much faster back to my car than the leisurely pace he’d taken as we went to his farm earlier. When we got to where my car was, he set the parking brake, hopped out of the truck and grabbed a wheel in each hand and dropped them behind my car. He hadn’t said a word on the trip back and wordlessly he got back into the truck and kicked off the brake and put the truck in gear. I stepped toward the passenger window, saying my thanks when he gassed it and took off down the road back towards home. I stood in the road for a minute, watching the truck recede and felt confused. Shrugging, I turned to my car and set about putting my wheel back on.

With my car back on four wheels and a good spare in the trunk, I drove down the road, back on my way. I nodded at the turnoff to his driveway, a gesture of thanks seen by no one. I realized that day that we humans are often indecipherable. You never really know what the next person is thinking, what joys or pain lies secretly under the facade they show to everyone. To others, we just look like people, sometimes revealing emotion or sometimes not. We give off vibes of generosity, empathy, bitterness or hatred; often times masking a truth about us that’s different. It’s the reason that there are expressions about walking a mile in another’s shoes, not judging a book by its cover, and things like that. The weathered old farmer was generous and accommodating to me, only to switch to seeming mistrusting and annoyed. I wondered if he’d really helped me out of generosity, or to ensure he could get me away from his property faster. I have no idea what was on his mind, such is the mystery we all are to one another. But as I think back on him I do it with gratitude and appreciation. He helped me at a time I needed help.

But he also started me thinking about people, and how there was a visible person as well as a hidden one inside, and maybe even another inside that one. Maybe someone that no one might ever know or even be aware of, even the person themself. I’ve never really stopped thinking about people and wondering what makes them do the things they do, why they think what they think, and then wonder if I really know what they think. It makes it difficult for me to be very judgemental –although I’m very capable of being judgemental. But then again I’m as human as everyone else, and in the end we’re all our own kinds of mystery.

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Cancer Conversations

“Each person’s life is lived as a series of conversations.” – Deborah Tannen Well, while I’m waiting for my friends to send me the photos from our trip out to a small Alpaca farm for a day of sheering… I thought I would dialog a bit about how the last several days I find myself talking […]

Help – Allow, Ask

“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” – Brian Tracy Needing or asking for help from others often pushes us way outside our comfort zone. We are the ones […]

Loss of independence

When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.

Borange 2010-04-01 11:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.

Borange 2010-04-01 10:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.