Transport for London

My hatred of public transport continues to escalate as my need to use it increases. That pre-rehearsed speech I have had in my head about the general public’s disregard and prejudice towards those with disability, becomes ever closer to an actual thing I am going to spit in a stranger’s face when they do one or more of the things that make it very difficult to live with an almost invisible disability in London.

The obstacles I face when I get on the bus, seem great, and my need to find an alternative means of transport in the form of a taxi is increasing. I say ‘seem’, because I have no idea if I have wound myself up to find issues or whether the selfishness of humankind really is on display every time I venture outside my flat.

I thought travelling would get easier over time, but it is not. It is not getting any easier. The act of using any mass form of TFL supported transported does not empower me not does it offer me independence. Travelling may get me from A to B, and then to C, but in order for me to do that on a bus or tube, I am slapped around the face by my limitations and illness, and my is that a rotten feeling to have every time I use an Oyster Card.

A few weeks ago after my treatment, I found myself using my Oyster Card on Tottenham Court Road and I think it would be a fair assessment to say that I was not happy with the situation I found myself in. By situation, I mean having to get the 73 bus northbound. Experience tells me that this particularly bus is populated by selfish bunts. I used to use said bus regularly.

Anyway, where was I? Yes, I was on the bus, and over the course of my journey, I drafted and submitted the following, which sums up my thoughts about TFL quite nicely;

“Vehicle reg: LJ11 EFK

I got the 73 bus from the Warren Street stop towards Stoke Newington.

I have concerns about the provision for disabled passengers more generally on London buses. Having previous fractured a vertebrae when a bus broke, I am understandably cautious when I am on a bus, and this includes a bus driving before I have had a chance to reach my seat. I walk with a walking aid. The issues are made more difficult by passengers not understanding the priority seats.

Today, however, my usual concerns were exasperated by a particularly rude bus driver. As I sat in the priority seat nearest the driver, my walking stick fell to the floor. Not a big deal I know, but it apparently warranted the bus driver shouting at me twice, on a full bus, to look after my stick and agressively shout ‘secure your stick’. Now, I have just had chemo at UCLH and I have a bag of drugs in one hand and my handbag in the other, so ‘securing’ my stick is somewhat difficult when I have nowhere to put it. It is something I find difficult when my hands are free. This is not the way to speak to disabled people. The driver has no idea why I have to walk with a stick and he should be respectful of that. There is much stigma attached to being disabled, and being shouted at by a bus driver because of my disability was humiliating and unwarranted.

A falling stick may make noise, but before he opened his mouth to voice his annoyance he should have considered my annoyance at having to walk with one and everything else that encompasses. It is ignorance.

Further more, at Kings Cross, there was another passenger with a Zimmer frame, whom the driver refused to let enter at the back of the bus (she did not seem capable of walking a far distance) and thus she chose not to get on the bus because she could not navigate the bends at the entrance.

It was an infuriating journey.

As I mentioned before, TFL’s approach to disabled passengers is far from perfect (I would suggest more priority seats for a start), and this bus driver just provided further evidence to support my view that the appropriate concessions are not made for disabled passengers. I do not think it is much to expect a few concessions and understanding from TFL employers/contracted staff, when one is attempting to remain as independent as possible and unfortunately, this was not afforded to me today.

Regards,
Emma Jones”

Nothing I do, will inspire a cultural shift in the commuter population; it will always be insular and self serving. I doubt, whether my complaints will make the driver think twice before he is rude to somebody again. Externally, the impact of me complaining was minimal. Internally, it made me feel a hell of a lot better. Especially when I received the apology. I have found a new pastime.

“1 April 2014

Ref: 4311555

Dear Ms Jones,

Thank you for your recent e mail regarding the driver of the route 73 bus you travelled on from Warren Street on 20th March.

I was concerned to learn of your experience. We expect our staff to be courteous and sympathetic towards our disabled customers and behaviour such as you described is unacceptable.

I can confirm that from the details you gave, we have been able to identify the driver in question who has since been interviewed by his manager where he was advised on all aspects of your complaint and reminded of his responsibilities. He will also be closely monitored to make sure that there are no further incidents of this nature.

Thank you once again for taking the trouble to bring this matter to our attention and I hope that you will accept my apologies for the inappropriate behaviour by a member of our staff.

Yours sincerely

Mrs X
Customer Services Manager
Arriva”

Small victories. They make me feel less weak.

Inside I’m Dancing

Once upon a twenties, there was a girl who loved nothing more than dancing and sweating whilst dancing and grinding and say then day that particular movement was dancing. Said girl’s only aerobic exercise for a long while, was the dancing. The pleasure she would get from the shuffle to a deep base would be evident when her hands would creep up over her shoulders. She was no ballerina. She did not have the elegance of a ballerina. Her dancing usually was reserved to prancing around her bedroom in her pants or it was directed towards a DJ booth. She had rhythm. Unsightly rhythm.

Said girl no longer dances. Not really. She has lost her rhythm. Her movement is restricted to a wobbly shuffle that she calls walking and that only occurs because she is heavily medicated. Her government has assessed her and deemed that she should only walk 200 yards at a time, thus pulsating her radiotherapy experienced hip really is out of the question. If she did not find twerking distasteful, the cement in her spine would still be a reason enough not to do it. Her arms are similarly weak and as sometimes these limbs cannot be raised above her shoulders, the distinction for her between walking and dancing, she felt, would be slight.

People adapt obviously, and our heroine has become partial to some private bed dancing, which is much cleaner than it sounds. It involves lying flat on a mattress, a bed really because she would struggle to get down on a mattress, and then wriggling her feet and hands. The activity usually takes place when the lady in question is intoxicated and attempting to recreate the euphoria of yesteryear whilst proudly listening to Katy Perry’s Fireworks. For her, this activity is still rare.

Rarer still is any form of publicly busting a move. Walking with a stick in hand is embarrassing enough for her as a 29 year old experiencing London nightlife, but dancing, her new ‘dancing’ would be impossible. Living in her brittle shell makes it difficult for her to experience London nightlife, so she would be unlikely to open herself up to the danger of being pushed and prodded on a crowded and slippery dance floor, when she is already having to manage the increased danger from the public that emerges through alcohol. There would be murder on the dance floor.

The loss was felt, until one day, after a few sherbets, in a room protected by her dear friends, she danced. For ten minutes before having to sit. She did not grind and she did not twerk, nor did she throw her hands in the air like she did not care. Importantly, she did not want to stand on the sidelines feeling self conscious and grieving. Deprived of obstacles, armed with her stick for back support, she moved from left to right to the sound of a beat. There was some backwards shuffling and even some sort of movement with other people. With stick in hand she moved from side to side. And she smiled.

Nobody bashed her and nobody drunkenly grabbed her neck and pulled it down because they were a moron, and nobody attempted to twirl her. She moved and she adapted.

It hurt her like hell the next day though, but if anybody were to ask her, she would have said that it was worth it.

Tuff

You’re fireproof. Nothing breaks your heart. You’re fireproof. It’s just the way you are. You’re fireproof. That’s what you always say. You’re fireproof. I wish I was that way.
Fireproof – The National

Tuff *. An exhortation on determination

Yesterday I was signed off from the physio I have been seeing since September. I’m going to be referred on to another gym group, so I’m not out of the system just yet, but it’s a major step, nonetheless. Another milestone, just in advance of a string of rather odd anniversaries which are to come over the next few weeks.

Since the musculoskeletal components of myeloma get under-reported in comparison to everything else, I feel it is a personal mission to write this stuff up. So here comes a potted recount of my physiological fitness over the last 2 years. Some of you know much of this all too well.

2012: March: The terrible crunch in my back that stopped me in my tracks. May-June: Increasing problems with walking, and particularly standing. July-Dec: Bone pain and chemo fatigue. I sat as much as I could. And slept propped up on pillows. I was slowly curling up. I avoided the need for a zimmer, mainly by using Lyndon’s buggy as a substitute.
2013: Jan: Couldn’t stand straight, or for long. Lingering pain, despite my myeloma being in partial remission. Feb: Verteborplasty released me from much of my pain, and most of my painkillers. Mar-May: Mostly lying down, really on account of my SCT. I suspect I was getting even more crooked, though I was too crook to care. Jun: Beginning to get a horrid realisation of the kyphosis I had developed. And beginning the fight to overcome it. Back on painkillers in order to begin to push my back back in to shape. Jul-Aug: Out and about, proving to myself that sitting in front of a PC is a major source of problems. Fighting to get flat, often experiencing really quite painful grinding sensations in my lower back as the bones realigned. Sept: Finally (finally!) seeing a specialist physio. She goes up in my personal NHS Hall of Fame for what she has done for me, in the ensuing 4 months. Oct-Dec: Continuing, determined, stretching routines. Measurable progress on every appointment. My head getting further back as I stand against a wall, until eventually I can touch the wall. Though I still need to be able to do so with my chin tipped down not up. My arms getting further down the wall when I stretch each side in turn. This second part is a reflection of me gradually gaining some rotational flexibility.
2014: Jan: Here I am. My upper (cervical) spine kyphosis is not quite corrected, but it is getting there. My mid (thoracic) spine pain is gone. (One’s thoracic spine doesn’t have much movement). My lower (lumber) spine is slowly turning back from kyphosis to lordosis – i.e. going the right way out – and I can begin to tilt my pelvis properly. I’ve got some rotational movement, and it feels like more is coming. My remaining muscular pain is diminishing and confined to my lower abdomen, my groin and the band across my lower back. I have been running, twice, without pain – which is proof, really, that things can move much as they should. I can swim 1km. I can ride a bike. I can walk miles. I can stand for a good hour or two before it gets really painful. I can carry luggage. I can get in a canoe. Though I think riding a horse was a bit much.


Dulwich Hospital, the unlikely scene of my salvation
I’m not quite what I was. I never will be. But then, I’m the wrong side of 40, and a bit of downhill is inevitable. And considering how many fractures there were in my back, I’m pretty delighted with where I am. Plenty of people comment to me right now that I look much more upright than I have for ages. I suspect I have regained a bit of my lost height, though I’m too chicken to find out. I’m certainly more and more mobile. And in less and less pain.

When I thanked my physio for all she has done for me, she told me that my determination has been an essential factor. I’m not saying this to show off (though I do feel quite pleased with myself about this), but because it is so easy to despair with myeloma. It (and its treatment) promises so many symptoms and consequences: pain, fractures, infections, anaemia, thromboses, calcemia, neuropathy, fatigue, kidney failure, memory damage. Oh yeah, and recurrence and death. It’s pretty easy to want to give up. Myeloma isn’t the only vile disease in the world (I have particular loathing for MND and MSA too, having seen what they do to people I love), but it’s right up there.

But, if you recognise my description of my experience as similar to your own, don’t give up. Never give up. Every day is a chance to “Get up. Dress up. Show up.” And Amen to that.

* For a change, instead of a song lyric, here’s a quote from a book, The Outsiders. Those of you not brought up in the 80s probably don’t remember the Brat Pack film adaptation…
“Tough and tuff are two different words. Tough is the same as rough; tuff means cool, sharp–like a tuff-looking Mustang or a tuff record.”

Surrender

There comes a time in everybody’s life when they have to surrender. They have to give in. Their hands are tied. They have to retreat. They are getting ready to wash their hands.

I am at such a point. I am at the end of my tether. I am waving the white flag.

I am finally ready for the laxative.

Please do not be disappointed. I no longer have the time to be constipated. Whilst we are on the subject, I do not have the time for the other thing either.

Yesterday, I realised after spending two hours on a ceramic bowl sweating through my nightie, that I was fighting a losing battle. I can recall my 17 month long reason for not taking laxatives but my enemy has changed, and I do not think my weapons are strong enough. I am too busy to remember to prepare and eat linseed everyday. The fortnightly velcade injection is preventing me from forming a routine, and it is keeping me on my toes with its unpredictable attacks. For two months, I have been unable to take my eye off the ball due to a very real fear of being caught short. I am fighting on my own. In this fight, it is not fair for me to slip my bowel woes into conversations with Housemate when he returns from work. Nobody needs to know. Big Sister is also not prepared for my observation on the frequency and odour of my wind. It is not right.

Enough is enough. My head is bowed.

The truth is, there is not enough time between my injections for my body to regulate and there is too little time between my injections for my body to get used to the cleaning product. It is torture or at least any torture I have ever known. Two months of it.

So, with the treaty signed I really home with these laxatives that I, Emma Jane Jones will be able to start making regular, erm, reparations.

EJBx

Separates

You know that feeling when you wake up knowing exactly what you are going to wear that day and said outfit is going to be the best outfit you have ever worn in your life and not only that, it will be the best outfit anybody else has ever seen? Well, that is exactly how I felt up opening my eyes this morning. I was going to wear a dress and I was going to look hot. H-O-T hot. I was very excited and pleased to be giving this gift to the world.

And then I remembered…

Today was a day I had to wear separates. The Medically Trained People made it so. Not only did I have to wear separates, but I also had to wear something with an elasticated waist. It was at that point I knew the day was going to be a let down.* I had not planned for this when my eyes were closed. I was going to have to look daggy. I was also going to have to have a bone marrow biopsy. My outfit upset me more.

I know it is a price one has to pay on Biopsy Day, at least on Velcade Days I do not have to lower my being to elasticated and ‘comfy’, I just begrudge it.

Nobody warns you when they tell you everything else about it, that myeloma dictates your dress, even, occasionally, forcing one to become sartorially challenged. At least once a fortnight, I dress for myeloma and not for me. Imagine that. It has been 17 months, and still, every time it happens, the few times it happens you understand, it smarts. It really smarts.

Oh, and I really cannot believe that it has been six months and four days since my transplant.

EJB x

* except for the fact that I was accompanied to my biopsy by two fine ladies and a foetus, and had a scone, I love scones.

An Exercise In Paranoia

When it comes to my illness, I am constantly on hyper alert for bad things happening. It’s not really an alert, I now expect bad things to happen. It did not used to be this way, except if you count the time I went to the doctor because I had a cough that I thought was lung cancer, which subsequently turned out to be myeloma. That old chestnut.

These days though, if I experience any change to my body, I fear the worst. I easily convince myself that the worst is coming. My favourite fear, is the thrice weekly belief that the pain I get in my head when I lean to the left is a brain tumour. Let us rue the day somebody said the words ‘secondary cancer’ to me.

The paranoia usually starts from the simplest of things and then, over a period of time, it will slowly spiral out of control to the point where it is all I can think about, am reunited with insomnia and have the constant sensation of needing a poo. I have a perfect example of this mania, which I am going to share with you now, because I am sitting on a train and I have the time and inclination to do so. Enjoy.

August-November 2013
I experience a slow and steady increase in back pain, though torso pain may be more accurate, because that covers my rib area and collarbone as well as my stupid spine.

Thursday 7 November 2013
I share my the tales of my pain with the Medically Trained People and I am told that that does not match my biopsy results, which as you should all know where ‘good’, and thus, I am booked in for a MRI scan. I was rather pleased about this.

Sunday 1 December 2013
I had my scan, which was very painful. You might know this already because I wrote a blog about it, though I am not entirely sure if I published it, because that seems to be the way things are going at the moment. Anyway, I am digressing. It was extremely painful. I found, upon my arrival and after donning the hospital gown, the staff to be dismissive and uncaring when they put me on the slab. I was just told to lie down and shoved right in there; I was not treated like when I came out of the tube. Why was that though? Oh Em Gee, what did they see on the scan? They were definitely taking pity on my, whilst being thankful for their lives even though they were working on a Sunday. The pain would not have been that bad if nothing was wrong, would it? I was informed that the results would be sent to my ‘Doctor’ (fools, everybody knows I have several of them) in a week.

The Following Week In December 2013
Washing the dishes and in my mind, like a big neon sign, was the word ‘TUMOUR’. Then, whilst I was in the bath, a little nursery rhyme appeared in my brain telling me that my L4 was about to snap. I was on the bus and there I thought that it had snapped along with all the other lesions on my spine. Get the picture? The bad thoughts were there and I did not like them.

Wednesday 4 December 2013
In the middle of my imaginative nightmare, I decided to send a casual email about my scan to the Medically Trained People and in the response I was told that the results would be looked at at the Monday morning meeting, and they would be discussed with me the next day when I came in for my velcade. At this precise point, when I was visiting Mamma Jones in hospital after an operation, my paranoia went up a step and then for the next six days, I counted down the minutes until I arrived on the Second Floor for my injection of Cilit Bang.

Tick, tock, tick, tock, something bad was going to happen, tick, tock. Appreciate budding flowers and a clear sky. Tick tock.

Tuesday 10 December 2013
I arrived at the hospital with a slightly sweaty right armpit, which is pretty normal when I am nervous. As soon as I was sitting down in a grey reclining chair, I asked the nurse treating me to make contact with my other nurse, so she knew I was in. Unfortunately, the nurse treating me did not know who I was talking about, so I had to whip my phone out and provide the contact details. I waited. I popped my big toes. Sometime later, I was informed that my nurse was at lunch, but she would call me later to discuss the results. For this reason and this reason only, I turned the ringer on my phone on. And do you know what happened? I did not not receive a call. That evening, the paranoia switched to delusional, with a rather healthy spluttering of swear words, as I imagined the worst whilst being unable to hold my arm steady because of the nerves. I sought advice from the Support Network, who all told me to ring the next day. I then had a few alcoholic drinks to take the edge off.

Wednesday 11 December 2013
I did not call. I did not call because I was due a clinic appointment the following day and aware of my growing mental situation, I decided that as I was definitely going to be told that they could not discuss my results with me on the phone, which is why I had not received a call the previous day, I was best to enjoy my final day of ignorance, before I came crashing down to the reality of terminal cancer. Of course, this did not mean that I did not think about it. I did attempt to bring forward my appointment time, but to no avail. More waiting.

I went out that evening and somebody made inappropriate sexual advances again, and still, all I could think about was the fact that my MRI scan results were going to be catastrophic. Yep, by this point, I was facing a catastrophe. I had a few alcoholic beverages to take the edge off. I did not sleep very well.

Thursday 12 December 2013
Results Day! I arrived at the hospital, but this time, it was not just my right armpit that had a sweat on. I was moist and not in a good way. I made my way to the Fourth Floor and all I could think was, ‘do not give me the Big, Tall Senior Medically Trained Person’ for he is always my bearer of bad news. I’m sure he is lovely, but by default, he’s my nemesis right from the point I met him on 22 August 2012. It was a stuck record in my head. I waited, and this clinic was running particularly late, so I waited some more, watching people go in before me. I cursed the fact that I was there by myself, it was going to be the sequel to Bad News Day, I calculated which friends could get there the quickest. I filled the 50 minutes by taking photographs. They were not very good.

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See? I needed the toilet, I didn’t go. Instead, I spilt my tea all over my dogtooth jumper from Marks and Spencer; it left a stain. In the time I spent waiting, I noted that the Big Tall Senior Medically Trained Person was not there, so imagine how I felt when my name was called and it was by the person who sits above him on the Myeloma Department’s headed paper. I was going to talk gibberish, I knew I was going to talk gibberish, because at this point, I was a dead, stylish, lady walking.

I sat on the pink seat and looked at the Very Senior Medically Person, whilst I attempted to hide my shaking.

And then, the best thing happened, she asked me to remind her of my case, not only that, but she looked at the computer screen a great deal as she caught up on the latest EJ news. That meant one thing, the news was not bad. Phew.

From that moment, I do not really have much recollection of what I said for the rest of the appointment, for I was part relieved, part cursing my stupidity.

As it turned out, the scan results were good. My bones are improving, apparently my spine looks like there is a halo around it. I never consider good news. The increase in pain, I was told, is most probably muscular. I left the room, exhaled and broadcast the results to the nearest and dearest.

‘Twas the night before Christmas

Okay, I’m just going to say it: Christmas sucked this year. It blew like an enthusiastic puffer fish doing Lamaze.

It was shaping up to be a great holiday. I was going to travel out to the coast and see my family, spend a little time shooting aerial views of Mulkiteo and maybe Everett’s harbor and marinas. Just about everything was going perfectly, including a local snowfall to lend a Currier and Ives look to the world. And then on Christmas eve it suddenly took a downhill turn. Crash, if you will.. I was in the back yard having just launched one of my drones. I was getting an aerial view of the town all covered in snow. The aircraft went up to about 20 feet and suddenly it was as if an icepick had been shoved into my back. I barely got the drone down safely, plopping it into the snow with a thwup! noise. I staggered to the aircraft and picked it up and literally fought to stay conscious as I made my way to the back door. I didn’t even unmount the camera, but set the drone on a shelf and staggered to my bed, rolling myself onto it. The pain growing worse every second.

My wife was out doing some last minute shopping and dropping and wouldn’t be home for a few hours so I was home alone. Once on the bed, any movement was so painful it took my breath away. I was literally stuck. A cough was agony, a deep breath was excruciating, and I couldn’t even get back up to fetch my pain meds. I couldn’t reach my phone just three feet away, nor my tablet which lay on the bed just out of reach. The pain was paralyzing and beyond any I’d ever experienced. It ached badly to lay there, but moving a muscle was out of the question. I was literally paralyzed with pain.

My wife was singing Christmas songs as she got out of the car and came in the house a few hours later. I heard her moving through the house and coming down the hall and I tried to call out –but taking the breath to do it hitched me up from the pain and just a whispered groan came out. She dropped some things off, I could hear bags rustling, and finally her steps came my way. “Sorry I took so long, sweetie, but I got tal… what’s going on?What’s happening?” She stepped to my bedside and touched my forehead. “You’re sweating like a pig! You look awful! What’s wrong?”

I tried to answer but I had to fight for every word. I said “hurt” and I said “pills” and the movement of my lungs hurt so badly I started screaming. That hurt worse and I screamed harder. I finally belched out two sounds: more feen. My wife ran into the bathroom and brought me my pill vial. I couldn’t take it from her and she figured that out and took out a pill for me and put it between my lips. I keep a glass of water by the bed and she lifted it for me. She tried to raise my head so I could wash the pill down but the motion hurt and caused me to scream again. The pill tumbled into the sheets. I was pleased she didn’t dig for it, but got another and this time put the pill on my tongue and poured the water carefully. I managed to swallow.

She knelt next to me and said she didn’t know what to do and kept asking me what happened. Did I fall? It was a fight for each word but I told her “no fall” and “hurt bad.”  She didn’t know how to use my smartphone; a Luddite of sorts, she hates them and the whole online milieu. With her pointing and me making noises I managed to have her get the contacts up and locate the VA hospital after hours number. It was robot answered and she was so angry she was spitting and screaming as it laconically went through about 30 seconds worth of numbers to press for different departments. I tried to tell her ‘zero’ to get the operator, because that would get her the AOD (Attendant on Duty) who could help. My wife accidentally pressed the power button on the side of my Galaxy SIII (yes, a damned stupid place for it) and had to start over. This time it failed to answer, it just rang and rang and rang.

The morphine was coming on and I found I could speak as long as I whispered. I asked for another pain tablet and she brought it. As we waited for it to kick in, she tried calling the VA again, only to have it just ring. For the hundreds of millions of dollars the VA has been spending on building additions and remodels, it is unanimous with all polled that they should have spent much of those dollars on more people, more and better equipment, and a phone system newer than state of the art for 1980. One waiting room conversation I was in asked the question “How many self-inflicted gunshot wounds had that frustrating system been witness to?” It’s a reasonable question. Part of the long and monotone message tells callers that if they feel like harming themselves or others to call the specialists at such and such a number. Then they repeat it as if a potential suicide might be ready with a pen and paper. “The first words on that damn box should be to press ONE if you feel suicidal.” commented a vet, the others of us in the room nodding assent. “Don’t make the poor soul have to remember a number and call somewhere else. All that is, is a slap in the face says up yours, go bother someone else.”

While I wanted to, I can’t just arbitrarily go to a private hospital. The VA AOD has to approve that and give a referral. Oh, I could go to the hospital, but I would have to pay for it myself as a voluntary selection of a private provider over the VA. To do that would be devastating to my financial situation which becomes more tenuous all the time, and is about to be further eroded as a cost cutting measure. There are some exceptions about going to a private hospital, and they’re highly conditional, like a verified heart attack or stroke. If the paramedics agree, you can go to a private hospital and the VA will pay for it but it’s best if it’s AOD approved. My situation was much more dubious, being pain from an unknown origin..

The second morphine helped some more and so I took another and tried to lay as still as I could. My wife sat with me and we waited, trying the VA number for an answer. We weren’t even sure if the hospital was open and receiving, given the holiday. At just after 6 am the phone answered and my wife was put through to the AOD who told her to bring me in. I tried to reach for the phone and it hurt so badly that I screamed and then my wife got a little hysterical. The AOD said to call 911 and have the paramedics load me and bring me to the VA in an ambulance. This is very unusual in my experience, but yes, they were open and waiting on me.

The ambulance ride was horrific. They were great getting me into the gurney, quick and gentle. But it still was agonizing and so was the trip. I felt every one of Spokane’s notorious potholes. The city’s roads are a bad joke. Every summer they tear the streets up and every winter people damage their vehicles driving on their damaged surfaces. War torn is a common expression for Spokane Streets.

At the hospital I went through triage and they began giving me dilaudid for relief. By the time the pain was dull enough I could somewhat function, I had 100 mg of morphine and 4 ml of dilaudid in me. I couldn’t move much in spite of the pain meds, so they had to wheel my whole bed to xray. Getting positioned for the pictures was also excruciating, but had to be done to see what was causing such severe pain. Xrays revealed that lesions in my ribs had literally torn through the intercostal nerves. There was nothing to be done about that except to do a nerve block. The procedure/surgery is not an offered service by the VA so I will have to have my oncologist arrange it. Except he’s in Afghanistan until March. The oncologist filling in was off until well after the new year. Everyone is trying to figure out how to proceed since my service connected illness has developed problematic condition. The people; the nurses, techs and doctors are all excellent and caring people, but they’re in a system that needs a lot more upgrading than the buildings the VA is spending so much money on. When my oncologist was swept away to Afghanistan, I knew I would miss him. I had no idea how much.

At the end of Christmas Day I was released home with a prescription for double the amount of morphine I’d been taking and some hydromorphone (dilaudid) besides as backup. Hopefully, this can keep me stable enough to tolerate the pain until the holiday is over and decision makers return and can find a more permanent solution to my problem. like locating a Spokane provider qualified and experienced to perform the nerve block. So much for a warm and pleasant Christmas, so much for my trip to see my children, and so much for any kind of lasting comfort until a resolution is found for my condition.

So, Merry Christmas to all and to all a good night. Dammit. 2014 is stacking up to be a hell of a year.

Lazy Sunday Afternoon

A Sunday is a day of rest. Or a Sunday is a day when one can pretend to broaden their cultural mind. If the gods are feeling kind, a Sunday should also be a day free of the hangover. I was able to experience such a Sunday on Sunday, well, apart from the MRI scan smack bang in the middle of it all. Apparently UCLH is open for non-urgent scans on a Sunday. I got the impression the staff wanted to be there as much as I did.

Prior to Sunday, I had had two MRI scans in My Myeloma life. The first scan, in the happy days of August 2012, remains, without a doubt the most painful hour of my life. My spine does not like metal slabs, in case you were wondering what to get me for Christmas. The second scan, understandably was met with irrational fear of me unable to sit up at the end of it. I do not need to be reminded of my fear, because it permanently squats in my head, but if you want to be reminded of it, go for it (http://ejbones.wordpress.com/2013/01/13/oramorph/). After all the thought and panic, that scan turned out to be fine, if I recall, I was elated after because I could do it and I became another. I could lie flat again!Going in to Sunday, I assumed my experience would be as it was before. I just assumed the wrong before.

In the last few days, I have been asked to explain why the expensive machine me feel like I was being tortured in a Tiger Tiger, and the the answer is simple; because I was lying down flat in a white metal tube half scored by poor sound quality modern ‘dance’ music and mania. I was not exactly flat, I was on a metal slab, with my arms crossed on my chest whilst my legs were raised on a foam cushion with my feet left dangling, with my neck was clamped down in a collar attached to said slab. In that position I stayed for 45 minutes, perfectly still, apart from some involuntary movement. I looked like The Monster and not The Bride. After ten minutes, I wanted to escape, but it was your tax money paying for the scan, so I persisted. The pain permeating from my lower spine, was worsened by my neuropathy. Here is a tip; velcade plus unsupported feet plus stillness does an excruciating dead right had side of your body make. Unfortunately, I was shoved into the big old tube with headphones on before I could tell the radiographers that I, being the special person I am, would need my feet supported.

My pain was such that I had no sense of time. It was such that I had to be assisted up at the end of it, and I really hate that . The pain was such that a dulled version of it remains. Hell, I even had to postpone a cinema outing because I would not have been able to sit still. Given the evidence to hand, it is probably wise for me to have had the scan. Let us hope that it only reveals lesions.

I find the fact that I can and do experience such levels of pain, that I am reduced to tears, embarrassing. I also find it shameful. Every time it happens, I blame myself for it. I blame my body and I get angry. I am hard. I have a high pain threshold. I should be able to deal with it, especially by now, it’s that simple. I’m sick of being a broken record. Now, my counsellor said I do manage it, but my irrational side sees any pain, as a defeat.

Back to Sunday, however. To make the experience even worse, prior to the big metal tube, as I slowly stripped in Cubicle 6, I realised two things. First, I was wearing tiny knickers. Secondly, I had forgotten to do something that if I was a lady who was unexpectedly getting on with a handsome man, one would be in dire straits. I discovered that those legs, my legs, were quite hairy. Visibly hairy. As it dawned on me that I was braless, prickly, still wearing my socks in a hospital gown I could not do up properly, wearing a tiny knicker, I felt self conscious. I am not at my physical peak, by a long shot, so I panicked. So, what do you imagine I did? I took a selfie. A selfie in a hospital gown.

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Enjoy.

And then, I walked into the corridor and exposed my buttocks.

I suppose that is a nicer story to remember than the pain.

In case you are wondering, today I am wearing a big knicker. Two pairs. Nobody is going to see them.

EJB x

FDA Buckles, DEA Gloats

The DEA is celebrating after the DEA finally put in place restrictions for opiate pain suppression drugs. This is bad news for chronic pain sufferers and is based on some very faulty logic. Of course, faulty logic produces faulty regulation. Claiming that over the past ten years 100,000 people have died through the abuse of narcotic drugs like Oxycontin and Hydrocodone, the FDA had initiated regulations to hog tie physicians abilities to prescribe Schedule II and Schedule III drugs.

manchin

Sen. Joe Manchin  supports the ACA and DEA

The regulation mainly forces patients to undergo doctor visits more often in order to renew their medications. Because of the high costs of medical care, this raises the overall cost of pain control by a tremendous margin. The regulation was opposed by the American Cancer Society, among other well known and high profile agencies with total credibility. Yet politicians mesmerized by the fallacious claims of anti-drug factions lump organizations in with the pharmaceutical industry lobby, discarding the venerable agencies’ veracity. Prodded by the likes of Senator Joe Manchin (D, W VA), regulations force physicians to reach to drugs like Acetaminophen or Ibuprophen to replace or dilute the opiates. The move ignores the fact that many of the sufferers of chronic pain due to cancer have sensitivities involving the liver, stomach and other organs which are aggravated by these drugs and other non-narcotic analgesics. For people with low platelet counts, it can induce internal bleeding –or at least uncontrolled bleeding like hemphelia. It ignores the fact that narcotics are used because they are the best and safest solution to curb suffering. So many of the more recently developed pain suppressants simply can’t do the job that morphine and hydrocodone do.  That’s why the DEA, in December, approved Zohydro, a sustained action analog of hydrocodone that works better than Morphine Sulfate Contin, a sustained action version of Morphine. The so called public health advocates cheering the FDAs new curbing of opiates were dismayed by the FDA approval of Zohydro. The seeming contradiction of actions is demonstrative that political pressure has been brought to bear on the FDA. While they are trying to see to the betterment of the human condition, they’re also vulnerable to DEA political tactics.

The 100,000 deaths over a decade is virtually a straw man argument, a strategy that seems to work better and better with governmental decision makers. The number is equal to about 27 people a day and includes all deaths with some relationship to the addictive medications. Of the 317 million person population, the number of people affected by this do not even reach a micro-percent of a single percentage point. The number of veteran suicides each day is three times the number of opiate based fatalities and apparently isn’t enough to move governmental agencies towards corrective action. Only the VA has veteran anti-suicide programs and they aren’t very effective, considering the number of veteran suicides hasn’t dropped at all since the invocation of these programs. Sadly, some of the number of narcotic associated deaths includes veterans who’ve taken their own lives or were killed by contaminants in street obtained drugs because policies made it impossible for vets to access needed narcotics to treat their chronic pain. That’s outrageous.

This is an invented problem. With hyperbole being passed around that says doctors are handing out addictive narcotics like candy on Halloween, the facts are considerably different. Physicians are under highly pressurized oversight for the most part. There are certain organizations that cater to the street distribution of opiates, charging considerably but making it easy for addicts or their exploiters to gain access to the drugs. Simply targeting the system abusers and working with the states (like Florida) which have tremendously lax policies is all that’s needed to deal with the abuse issue. To criminalize sufferers of chronic pain and to essentially punish them for the laziness of the DEA to effectively meet their mandate is simply the wrong way to deal with the problem.

For the DEA to be driving the FDA is a profound step in the wrong direction.  But then what should we expect? The DEA’s expertise has nothing to do with medicine, it is solely focused on criminalization and punishment. They’re law enforcement, not health improvement. The same holds true for the politicians who’ve reared their heads in order to micromanage agencies that the politicians have no expertise in at all.

The Big Poke

Last week, I had me a little bone marrow biopsy for a laugh. Not a laugh as such, more like a painful necessity, that I feel like I have become accustomed to.

The procedure was my fourth biopsy and I can confirm that it was very painful indeed. At one point, I am sure I screwed up my face so tightly, that it looked like I had it firmly clamped in a vice whilst constipated. Having done two of these bad boys by myself and two with another non Medially Trained Person, willing to chat utter nonsense to me whilst somebody is drilling into my hip, I can honestly say that giving in and saying that I needed help, makes the whole thing much much easier. Much easier. Friends huh, aren’t they just the best?

A few things distinguished this biopsy from previous ones. The first, and most embarrassing involves the Hot Flush. I know, I am still having them, for which my bedsheets are thankful. After the big poke, I went for some tea and cake and I got my sweat on. I got my sweat on real good. It was to such an extent that I sweated off the dressing on my hip. I did not even know hips could sweat, but evidently they do. I only realised that they do, when I went to pull my knickers down for fun and pulled that plaster clean off. As a consequence, I had to go back to the hospital, admit the unfortunate truth and get in cleaned and redressed.

The second issue that distinguishes this biopsy is the pain. It certainly hurt during it, but it’s the pain after that has me ouching. By the end of the first day, I was walking with a limp, something I would have previously saved for the drunken injury. And then the pain did not go away. It hasn’t gone away. I am no longer limping, but there is a funky feeling from the bottom of my spine round to my hip. My brain works in funny ways and I cannot recall whether the pain started before or after my biopsy, and this I find most frustrating. I am awash with paranoia. Paranoia and pain; everybody’s favourite duo. Will said pain subside? Is said pain real? Is my kyphoplasty reversing? And so on and so on and so forth.

The final point that makes this biopsy an episode of Fun House is the result. I suppose the result of the last one was important too, but that has been done and dusted. This is now.This biopsy determines what is going to happen to me going forward and that my friends, is all so very important. It’s serious stuff and I know that. I know that everyday, and I will continue to do that until I get the result. Just 10 days to go. Woo hoo.

Now, when you close your eyes to sleep tonight, just imagine me and my sweaty hip. Phhoaarr.

EJB x