Monthly Archives: July 2014

Hair Cut I

The time came a few weeks ago for me to stop pretending I was Mark Hughes circa 1993, and have my hair cut.
If I am honest, I had been advised on multiple occasions prior to three weeks ago, to visit a professional hairdresser. It’s an important distinction because my last few hair cuts, if you can call them that have not been by individuals trained in hair. Trained in medicine maybe. Works in TV production for sure. But hair? Not on your life.

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The badly timed passport photo

My last proper haircut, in a salon was on the 9 August 2012. I had different hair then. It was long, thick and straight. Now, I have short and curlies. Thick short and curlies. Again, this is important to note because I have absolutely no idea what to do with curls.

I hate having my hair cut, I always have. Making small talk with a stranger whilst I am forced to look in a mirror, as people are blasting heat all over the place sitting on a pleather chair wearing a waterproof smock for an hour is hardly my idea of fun. If anything, it’s rash inducing. For this reason, I sought advice from my curly haired friends and made a hair appointment accordingly.

When my hair was growing back, I imagined my first real haircut to be a milestone. Unfortunately, my relapse and the knowledge that at some point I will be losing my hair again, sooner than I had hoped, put a slight dampener on the proceedings. The Hairdresser said things like “it will be so exciting to see this grow in” and “look at longer styles you like and we will aim for that.” I did not have the heart to tell him that I did not know how long this curly mop will last. Perhaps it’s because I am not ready yet to admit it to myself. Who knows how it will grow back?

Even though it was not the milestone I had hoped, it was a far more pleasurable experience and one that warranted a trip to Mac afterwards in preparation of my benefit claims. Crucially, he told me what I need to do to style my hair. I now have a diffuser and I know that Head and Shoulders is bad. One of the Blood Taking Ladies informed me today that I am still not using the diffuser properly, but my technique has improved in the last fortnight. Phew. I told her it is a work in progress and one very much dependent on the daily level of back pain and my ability to lift my arm above my head.

The long and short of it is that for the first time in a long time, I can actually tolerate my hair. I am embracing the curls, not so much it’s current volume in this humidity. There is a lot of volume today. I will continue to try embrace it, for as long as I have it. The news on the street is a new drug I have been prescribed can cause some hair thinning, so the curls may leave me even sooner than I had secondly anticipated.

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I tell you something for nothing, I am pretty sure I will regret that passport photo in three years time. I have it for ten.

EJB x

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Event Planning

Events terrify me these days. They terrify me not because I am socially awkward, though I can be slightly awkward at times because My Myeloma led to my almost sobriety. Events terrify me because they come with so much baggage. The baggage usually comes from my puny brain, and mostly stems from a belief I have that people, that’s right the broad brush stroke of people, do not full understand myeloma and think that it and by connection, me, are a pain in one’s arse.

Will my energy last? Will somebody who does not know about myeloma, or is just plain ignorant, put me in some sort of headlock and yank my neck down? Will a drunk person bash into my back causing it to fracture? Will my back fracture by itself? Will I cause a scene? Will I spend the entire time wanting and needing my bed? Will I have any fun at all? Will people understand that I cannot have fun like I used to? How will I get to my bed? What will happen if I have bowel issues?

Three or four or all of these thoughts tend to pass through my head prior to any scheduled event. They did prior to my relapse, so in the time hence, said fears have only increased.

There are times when I cannot go to events. It has taken nearly two years for me to fully admit this to myself, but it is the sad truth. There are just some events where the value of pain and fatigue crush the chance of whatever fun I may have, and in turn, ever so occasionally, I will let people down by my absence. And yes, I value myself enough to believe that my absence would feature on people’s radar. It’s never an excuse.

A few weeks ago, 12 days ago to be precise, I had to attend an event. Not just any event, a wedding. Not a wedding located in taxi distance from my flat, a wedding near Halifax, Yorkshire. Due to some well documented issues with my back and the acceptance mentioned in the paragraph above, I was unable to attend the hen do.

I have been to a wedding with myeloma in my body. I have also declined two other wedding invitations because the myeloma forbid it. At the wedding I attended, I was a bridesmaid, but there was no fear attached to that event because I was surrounded by a family who know too much about myeloma, so I knew that my limitations had been thought of. My family was also invited to said wedding, so they were around in the evening to mind me. Mind me they did, but not before a drunken fool made my spine go into spasm. The wedding was also located a mere 8 miles from my second bed, which came in handy when I needed to lie down.

Anyway, I digress, back to the wedding in Halifax, away from these comforts. I was advised by a Medically Trained Person not to attend. It was some advice that I paid absolutely no attention to at all. Instead, I set my mind to attending, and put a personal delivery plan into motion, to ensure my success. Sod the bride and groom, it became about me getting through the day. Well, it became a little bit about that, it was still their special day.

I had a week of resting to preserve energy and one day of not leaving the flat at all, lying flat, on the wedding eve. I changed the days I was supposed to take my steroids to avoid any chance of a crash, and I also used those bastards to assist with my staying power (something I did as a bridesmaid too). I also took cereal bars, lots and lots of cereal bars and lollipops, should I, at any time feel like I was about to crash. And still, there continued to be some mild fretting over my usual event related insecurities.

The point of this blog is to say that all that worry, all my worry was redundant. I might even go as far as to say that it was unnecessary. I have long worried that my friends do not understand myeloma and that within that, they do not have the patience for it. The patience for me. It is a long running theme in my counselling sessions. The wedding was on a Saturday and by the Sunday night I had this strange feeling of love and gratitude in my stomach. Almost shamefully, I was beyond pleasantly surprised.

There was a group of about 15 people at the wedding, who I felt were on hand to make my life easier. Actually, my description is incorrect, because I did not feel like me having myeloma was a big deal or a chore or a nuisance (apart from when it came to getting to the car at 01:00hrs, and even then, I was assured that I was none of these things). Some how, it subtly blended into the background, bar my profuse sweating, and I was able to last the entire day just like them.

If you are wondering what the hell I am going on about, let me enlighten you.

• The day before the wedding, a friend came round to paint my toenails because I cannot.

• I did not need to think about any mode of transport, I was driven to and from Halifax riding shot gun.I was also driven to and from the wedding venues, totalling four journeys, with four different sets of people.

• I was allocated a place to lie down, should I (and I did) need it during the day.

• A friend noticed my profuse sweating, and gave me a cooling wipe.

• I was given a means to return to my hotel at any time, should I (and I did not) need it.

• A friend convinced a stranger to drive up a long steep hill at 01:30hrs in a pick up truck to collect me because my lift to the hotel could not get up the hill and the booked taxi refused to.

• The bride kindly excused me from my pre wedding commitment to make jam, because she knew I would struggle to stand and bend at my hob.

So you see, the moral of the story is this: My Support Network do get it, it is not just a select few who understand my plight, and when done correctly, I can pluck a good 12 hours worth of energy from somewhere. Oh, and my friends do sometimes make me feel warm and gooey inside. And I looked nice.

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EJB x

P.S. I slept for 14.5 hours the day after the wedding. It was grand.

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Crashed

Last Thursday morning, I woke up and asked myself how it could possibly be Thursday morning and I promised that I would write about how I had spent three days in bed with time on fast forward, later that day. The only issue was that on Thursday, I was still in bed and my time was still on fast forward. It was a feeling that lasted for a further two days. It is Monday morning now and I no longer feel like my time is just passing me by, nor do I feel like I need to stay in bed all day. It is a feeling that I can only describe as an achievement. An achievement that needs to be embraced in moderation, obviously.

The fault lies with the steroids. The beastly steroids, steal my time and effect my mood, and try as I might, when it happens there is not a damn thing I can do about it. Last week, I was crashing. I want to give what happens to me a new name, as I doubt the word ‘crash’ is medically accurate. Though a ‘crash’ is exactly what it feels like to me. My body stops, so too does a lot of my cognitive function and I temporarily do not feel like myself. The time goes by so quickly; the lack of achievement feels like a complete waste of my 30s.

Here’s a little secret; cancer is not glamorous. Sometimes, you really do have to lie in bed, sweating, whilst flashing your knickers, shoving ice lollies down your gob to enhance the taste buds, for five whole days. Knowing that whilst you, or in this case I do this, everybody’s life around me just goes on like normal. I am one to blow my own trumpet and as I told myself last week, it takes a certain amount of bravery to do absolutely nothing and not cry hysterically about it, feeling insanely sorry for oneself.

My week, my friends, went a little monotony like this…

On Monday, my mouth tasted like I had had an every lasting metal flavoured gobstopper and I was tired. I was not tired because of my steroids, I was tired because I had spent too much energy on the Saturday before the Monday. I therefore decided that my flat was where I needed to be. I also completed the last parts of my crash preparation, which pretty much involved making sure that the fridge and freezer contained food that could be cooked by a brain dead zombie experiencing dizzy spells, who struggles to bend down and calculate timings. The preparation was important, I had decided in the week leading up to it that I needed to see whether I could look after myself during a crash. I also decided that it was essential for me to succeed in this challenge.

I cannot remember anything else about Monday apart from the fact that I watched a film with Housemate on and I told him just before I went to sleep that my crash had started. It’s a subtle change, but last week the first thing I noticed, apart from the horrific taste in my mouth, was not the fatigue but the fact that the skin on my neck and shoulders felt bruised. This is what steroids do to me. Well, it is one thing steroids do to me.

Tuesday and Wednesday are a blur. Tuesday and Wednesday were the worst days. I know I showered and got dressed, but neither activities occurred before midday and neither activity was what I would describe as easy. I started several films, but I do not think I actually finished any in one sitting. I wanted to sleep and when I was not sleeping, I was really just staring at the tea stain on my bedroom wall unable to collect my thoughts. I may have spent a lot of time looking at my phone, hoping for and getting news from the outside.

I did not leave the flat during this time. Not because I did not want to, but because I knew that I probably would not have been able to get anywhere. Housemate cooked me dinner and encouraged me to leave my bedroom, which was a good thing. Moving the 16 steps from bed to sofa, gave me a nice change in scenery and online demand television service.

I was not maintaining a spreadsheet of my activity, but it would be remiss of me not to mention that during these two days, at least two hours of my time was spent attempting to toilet. On Wednesday, after 45 minutes I had to give up because I had a dead leg. If you want me to be graphic, it was my right leg.

By Thursday, when I felt it should only be Tuesday, I needed to escape the flat. Escape I did, 10 minutes in a taxi to a matinee screening at my local cinema. It was progress. I also made a little trip to Sainsbury’s on my return to stock up on ice lollies. I was out of the flat for three hours and that was enough for me. It was too much for me. By late afternoon, I was back in bed, feeling once more like a zombie. If zombies also experience inexplicable rage, which after I few hours, I deduced was due to the fact that from Friday-Monday, I had taken a rather hefty dose of mood altering Dexamethasone and not because Housemate made me wait less 30 seconds to reach my ice lollies.

Friday was much the same as the three days that proceeded it. I was improving, I know this because I actually cooked something rather than reheat something to eat. I also cared about what I ate and it was not something I had to do for energy. Okay, I also went out for lunch with my cousin. That trip, was a whole hour out of my flat.

All in, last week was a frustration. It was not helped by the current humidity in London. Heat and steroids are not a happy cocktail. That said, it was not as frustrating as I thought it would be. Unlike a fortnight ago when I thought there was not a chance of me getting through my treatment, I realised as I was lying in my pit, that I would get through it. I cannot sugarcoat it, the crash is awful, and I hate that because of the extra dose in my first cycle, I will be crashing again next Monday. Next Monday for goodness sake.That said, this is temporarily my job. Taking my medicine, doing what I am told and spending a week in bed, is my new job. If I think about it this way, I know that I can banish some of the frustration away. It is not laziness. It is just the way things are for me.

I do not want to embarrass anybody, but I know now that whether I crash in Deeping or London, there are people around who have my back and are on hand to assist me, should I need it or request it. The need and the request, do not often go hand in hand. I felt thoroughly supported last week, and although it was me feeling and looking a mess, it felt almost like a team effort with Bruce as the mascot.

I friend told me that on Thursday of last week she went to an exhibition, to a lunch, to the cinema and then went out in the evening. Her day had more activity than my five days in bed. It had more activity than my entire week. I will learn in time to not get jealous about such displays of energy. Like I said, in a week’s time will be a good place to start.

As for my weekend, well, I ended the crash with a casual trip to Buckingham Palace. That in itself and the two shandies I had in the evening, meant yesterday was a day of rest. Now let me tell you something for nothing, after a week of not being able to leave my flat, a day choosing to stay in my flat watching a sitcom aimed at females, may be one of the finest feelings known to myeloma-kind.

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Buckingham Palace

And now, I shall attempt to have a fulfilling week. I need to refill my cupboards. Stat.

EJB x

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An Anniversary

I should have hit the ‘post’ button yesterday for this post to have had a more dramatic impact. Unfortunately, I really did fight with fatigue.

One year ago, I was struggling to manage the side effects of chemotherapy in 30 degree heat. Today, I am struggling to manage the side effects of chemotherapy in 30 degree heat. Sweat, it would appear, is my constant companion. One year ago, I was in the Macmillan Cancer Centre on Huntley Street, where I also happen to find myself today. The difference between the 17 July this year and the 17 July last year, is that last year, I had a stem cell transplant.

The difference between then and now, my friends, could have been so much more. Two months ago, it was.

Events of the last month have made any celebration of the date worthless, and even the acknowledgement of the date seems futile. Sure, I got a few good months and a holiday from it, but I did not get enough. Realistically, I am not sure if I would have ever been happy with the inevitable relapse, but I would have liked very much to have celebrated today. To me, unless I was going to go down the path of self pity, which I do not feel like doing, the only point of worth now is recognising that Tottenham Court Road remains as equally vile in this heat as it did in 2013.

Today could have been something special, something worthy of cake and balloons and a bottle of half price prosecco. It is not though. Instead, today just happens to be a day where I have a clinic appointment, will fight my fatigue before socialising for 3 hours before the fatigue sets in again and I need my bed, all accompanied by a particularly bad twinge in my back because I decided to pick up the bath mat this morning. Today then, is just another day.

No parties. No celebration. Just myeloma.

EJB x

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Day 5

You’ve seen the drugs. The story of my side effects is going to be a long one, and will no doubt consist of several chapters. In the meantime, if anybody was in any doubt of what I feel like when the steroid crash starts to kick in and I have had a few doses of Oramorph, then feast your eyes on Day 5.

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I do not think I look like this today. I most certainly do not feel like this today and for the moment, I think that is all I can ask for.

EJB x

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The Drug Regime

I have been on my new treatment for 12 days now. Considering I have been through it all before, twice before, it is taking some getting used to. They come with endless side effects. It is a list that is long and is literally a pain in my bum. Practically however, taking the drugs, sorting through the drugs, swallowing them and remembering to take them is a chore. It’s a regime, it’s a 24 hour drug taking regime. If I were lighter, I would rattle. I am not light, so I do not rattle. My overflowing drugs drawer does that for me. It is overflowing into my make up drawer and that drawer is already full. The stuff in the drawers isn’t even the drugs I have to take for the next week, for they are in my handy dosette box. It would be impossible to remember to take everything without the handy organiser. That’s a tip from me to you. Invest.

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I have yet to work out how many drugs I take every day. I am doing that as I type. I keep throwing numbers around, 15, 20, 30. You get the gist. It is a lot. This blog, will act as a useful exercise, if only so I can accurately boast about how many pills I have to take, when most people opt to take vitamins. Anybody who has myeloma, or any form of cancer for that matter, will not be surprised by the volume of drugs. Correction, free drugs. I know I must be used to the number of pills, by the volume I can fit into my mouth and swallow in one go. You have to give it to myeloma, it has given me one hell of a gag reflex.

As My Myeloma has given me some delightful feelings in my spine, I do not only take drugs to combat the disease. I also get to take a daily cocktail to manage my pain. Unfortunately, we are not quite at the point where that pain is managed. That will come. In the meantime, I am on four different types of medication, excluding the bone juice, which allow me to get out of bed. Currently, because I have decided to up my MST dose, I am taking more pills as the pharmacy decided to give me 10mg tablets instead of 30mg. They will receive a request the next time they dispense to be certain.

My four week treatment cycle involves three weeks on Revlimid, and four days (bar cycle one when it goes up to eight) days of steroids. So I can take these, I then have to take six other types of medication to protect my body from bugs and other fun things.

The Sharps Box is also back. It’s still yellow.

Oh, and as I still experience the side effects from the menopause, I continue to have HRT seep into my skin from a semi permanent patch on my bottom.

The contents of daily dosette box then, is currently like this (italics equals pain):

MORNING
1 x Aciclovir 200mg
1 x Ranitidine 150mg
1 x Allopurinol 300mg
2 x Docusate Sodium 10mg 💩💩💩
2 x Paracetamol
4 x MST 10 mg
1 x Diazepam 2mg

AFTERNOON
1 x Co- Trimoxazole 960mg (three times a week)
1 x Aciclovir
2 x Parcetamol

EVENING
1 x Revlimid 25mg
1 x Aciclovir
1 x Ranitidine
2 x Docusate Sodium 💩💩💩
2 x Paracetamol
3 x MST 10 mg
1 x Diazepam 2mg

1 x Fragmin injection

On Days 1-4, after breakfast, you can also add;

20 x Dexamethasone tablets

On my week off, I get to skip the Revlimid.

So, if my maths is correct, I take between 26 and 48 pills a day and an injection. If I am having a particularly bad day, I may also take 10mg or two of Oramorph and another Diazepam…. And I wonder why I cannot poo.

I’ll tell you something for nothing, it’s a lot of packaging.

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EJB x

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The Ugly Grey Chair

I am currently in heaven. Not actual heaven, but a disinfected, grey reclining heaven with a remote control, foot rest and neck support. In short, I do not want to move from the plastic covered cloud I have found myself on, even if it is located next to three of the most miserably rude people I have ever come across in clinic.

I have sat in one of these grey chairs before, several times in fact, but never have I ever truly understood their beauty and power until today. I was shallow and could not see past their appearance. My treatment has concluded and yet I remain in this seat, because for the first time in what feels like an age, I am comfortable. Maybe I have spent too long paying attention to the big red chairs. All flash, no substance. I should have known that ugly but supportive is better. Maybe I should apply this theory to the gentlemen, if there were in fact any eligible gentlemen out there able to make me feel as good as an ugly grey chair.

The fact that I have not been able to get comfortable is not a secret. It is not groundbreaking either, much to my dismay. Warning, do not put me on a hard fold down chair. Bad things will happen. Everything, whether it is a bed with a memory foam mattress, a sofa, a chair, a cinema seat, a bath, the toilet seat; nothing offers sufficient respite to my spine. Every position is noticeable, and movement from any position is followed by a comedic groan designed to disguise the level of pain I am actually in. I sound like a broken record. At this precise moment in time however, I am not. The record has changed. My bum is snugly tucked between the arms of the chair and for added razzamatazz, I have two pillows behind my back. Any minute now, I may start to make embarrassing noises.

The purpose of this new found comfort today, is the bone juice. I have come in for some bone protecting awesomeness. I have been looking forward to getting my bone juice all week. Zometa, I have previously discovered will buy me a few days of lesser pain. Not feeling my spine on this waterproof lump is a bonus. I was not anticipating that administering said drug would feel like a massage and a warm jacuzzi all in one.

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Lush

People are looking at me now. This is the NHS, they need the seat. I just do not want this comfort to end. Sod medication, this is treatment. It says something about my current physicality that sitting in a chair next to three ruddy faced blobs, is my ideal, but that is just the way my life is at the moment. It’s an ugly grey chair.

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EJB x

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That’s Life

The lyrics to ‘That’s Life’ keep going round and around my head. It’s okay, I know what you are thinking, how trite. It’s trite because it is trite. Did Frank Sinatra really just pick himself up and get back in the race, every time he found himself flat on his face? Or is that just what he, and the thousands of imitators told themselves they should be doing as they drowned their sorrows in whiskey, killing more and more of their brain cells whilst emptying their wallets? That song makes it sound so easy. You have a bad time of it, but you just get up and fight again. At least I think that is the correct interpretation. I do not want to be dead by July. We’re in July.

I have always seen myself as fighter. The silent, mystery sort of fighter, but a fighter all the same. First time round, My Myeloma brought the best of that out of me. It was my badge of honour. Giving up, not fighting, collapsing, were not an option. Occasionally, I would bawl into my pillow and produce copious amounts if snot, but never did I ever really think that there was no point in attacking myeloma with all my might. When I could not get out of bed for days on end, the time I spent 90 minutes sweating through my clothes in Mamma Jones’s wet room as I tried to force out a week’s worth of faeces as my mouth repeatedly salivated tin, when I could not bend down to reach my oven. Never once, did I think there was no point in my trying to achieve what were, in essence, very limited goals, Back to the song, I did think it was worth a single fly, and so, there was absolutely no need for a big bird or the thoughts of me not trying. I just did. I just carried on. I’m not sure who I was racing, but I did not want to lose, so I got up. Again and again and again.

If you have not sensed it already, I do not currently feel like fighting. I do not feel like doing anything. Correction, I feel absolutely incapable of going anything. I feel alienated. In the last week, my sum of achievements have been extremely limited, and to make myself appear slightly better than I have been, I will include organising my weekly drugs as an achievement. I also got on a 45 minute train from London to Peterborough. That is it. It’s not a feeling I am used to, nor am I relishing in enjoyment from what others might consider to be relaxing. I am not answering my phone. My phone is a connection to people’s lives who are not bogged down in myeloma, guilt of having myeloma and the knowledge that there will be at least another two years of this.

Since Thursday morning, after I achieved my first night’s sleep since Saturday, I have slept and cried. Cried and slept. And flipped/reversed it again. I have been absolutely incapable of anything else or any other thought. I have attempted to watch the big shiny box at the end of my bed, but I just fall asleep, or I start crying. It is possible to do both, I have tried it. I have gone to bed telling myself that the next day will be an improvement, but it is not. I see no point in it. I see absolutely no point in any of this. Let us just be thankful that I continue to shower.

I am wholeheartedly angry with myself for my current mental state. A relapse, this relapse, was an inevitability. Earlier this week, I think I knew this and I felt like my stoicism that has been my good friend this two years at least had returned. I do not know what has changed, maybe it was missing my friend’s funeral because my body was too weak to walk. I currently have no strength to fight. I want to sleep. I want to go to sleep for a really long time until I can wake up, have this be over, or more realistically, be strong enough to get myself back in the race.

This was an inevitability, so I do not understand why I am so shocked. I do not understand why I am mourning so much. Most of all, I do not understand why I am allowing any head space to the thoughts that fighting is just a waste of time and that I might as well let it take over now for it will save more grief and money for everybody in the long run. I’m not ready to fight yet. I am not ready to see people tilt their heads at me and for me to be jealous at them for being able to tilt their heads. I do not feel strong enough to find a current middle ground to the life I had a month ago and the one I have now. I cannot manage the responsibilities.

It’s folly I tell you, folly. I do not want to die. Nor do I want to give up. I just haven’t quite worked out how I can do these things, when I feel like I have been kicked in the gut and had my life stolen away from me for the second time.

This is temporary. It has to be. That’s life, after all! I’m definitely myeloma’s puppet, pauper and pawn, right now.

I think there are people out there relying on me to find my strength. I am most definitely one of these people. I just really do not know if I am ready for that yet.

Can somebody else please change my tune please? I do not want a drunk somebody singing this to me, tie undone, as my only option.

EJB x

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Ever Increasing Pain

The quick deterioration of my movement over the last month, has been an unwelcome surprise and it has been something of nightmares. Cancer I can handle. Being bed ridden and unable to climb into the shower? Not so much.

Two months ago, I was worried that my movement had improved to such a point that I could not in all honesty, carry on without contacting the Department of Work and Pensions. Of course, I still had my good and bad days, but on my good days, I could challenge myself. I could almost feel normal.

Then there was a wake up call. A big fat, need my walking stick to get off the toilet, wake up call.

I am now at a point where my movement is so restricted that in the last few days, I have been bed bound, tripping out on a healthy cocktail of Oramorph and Diazepam, contemplating the meaning of life. Needless to say, I enjoy this return as much as I enjoy a Black Forest gateau with extra cherry. In case you were wondering, I do not enjoy a Black Gateau and I most certainly loathe the cherry that any extra would be a waste.

Forgive the length, but the following is an honest assessment of my recent dealings with Mr Pain;

Monday 12 May 2014
I was in Rome, and somehow, I managed to walk five whole miles. It was accompanied by lots of complaining and ounces of pain, but I did it with bells on.

24-27 May 2014
In an act of dogged independence, I repeated Rome’s sightseeing in Berlin, only this time, I did it whilst carrying luggage.

Evening of 27 May 2014
On a train from Southend Airport to Stratford, I decided to lift a 9kg suitcase. This was an error in judgement, I know. The truth is, I forgot that there was a reason why I should not be doing heavy lifting. Subsequently, on a train from Stratford to Dalston and then on the short walk home, I realised that I could not use my left shoulder. The pain was unbearable and it remained so for the next three days.

Thursday 29 May
I had an appointment with the Medically Trained People, during which, I received a royal telling off for doing too much. Fortunately, as the disease was not active, the pain was believed to be muscular. There was another telling off and I was sent for an X-ray or two.

I started to write a blog about me being a forgetful fool. It was full of mega LOLZ, so I apologise for declining you of that gift. As X-rays were a novelty, I also took these rather attractive photographs reminiscent of days gone by.

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The X-rays revealed nothing. I however, had to resort to the dreaded Oramorph to allow me to sleep. It was Oramorph by night and a sling by day.

And then the pain slowly went away.

Friday 13 June 2014
The day started with me starting one of my usual, riveting conversations with Housemate. It went along the lines of ‘do you believe in Friday the 13th?’. He said no, and that was the end of that.

Shortly there after, a sharp pain appeared in the middle of my back to the right. The pain was such that I could not bend. I could not laugh and I struggled to sit. In short, it felt very familiar to me and I was worried enough to inform the Medically Trained People. The pain was also such that I once again, reached for the opiates. I also started double dosing my standard MST dose twice a day from 30mg to 60mg.

That day, was Velcade Day, so I was seen by another Medically Trained Person who tested my leg movement, advised bed rest and sent me for another X-ray. The x-ray had to be done in Accident and Emergency, which is only noteworthy because I had to strip in front of the radiographers. I was wearing a pair of flesh coloured Spanx, so I am sure they enjoyed that. The pain was such that I cried and went home to cry some more. I was offered a hospital bed, but I declined.

Sunday 15 June
The pain persisted, shooting up my spine whenever the opportunity presented itself. I say opportunity, what I mean is, whenever I breathed. It is difficult for me to give an objective opinion about my pain, I’ve had it for too long to be able to describe it. I knew that this pain was different because every time I attempted to get out of my bed, my back felt like it would snap in two. Every time I stood up.

I phoned the on call Haematology line, shamefully, with tears once more and I was advised that my X-rays were fine. I was told that there was nothing that they could do, and I could take more Oramorph and paracetamol. It’s not important to my tale, but the person I spoke to had a speech impediment and every sentence was followed by a low snigger. It was most irritating.

Monday 16 June
The pain had eased slightly, but I was asked to come into Clinic on the 19th. Turns out that appointment was not about my pain, but to be safe, a MRI was ordered.

Tuesday 17-Saturday 28 June
I went into my overdraft using taxis to get me from A to B and back again. On the two occasions when I attempted public transport, I regretted it so much, it reminded me of the last time I accidentally ate a Black Forest gateau. Plans were cancelled, and I spent a considerable amount of time in bed, hating myeloma and everything it stands for. I made empty promises to myself that I would stop pushing my body, for I believed that if I stopped pushing my body, all would be well and my muscles would behave.

During this time, not because I am a badass, but because I value my brain, I chose not to take any Oramorph. I chose functioning over pain. I functioned barely, for there is only so far one can afford to travel by taxi. Peckham Rye, for example, was a no-no.

My physiotherapy was cancelled indefinitely.

Sunday 29 June
I woke up, intent on travelling to Cardiff. I sat on a seat it is customary for all Western Europeans to sit on in the morning and with that act, I screamed as a shooting pain made itself known from my lower spine reaching all the other parts of my body. It pulsated. I stumbled to my room and cried out in pain. I could not describe it, but at the point it happened, I would rate it as a 10 on the medically accurate pain scale.

To cut a long story short, phone calls were made and before I knew it, I was in A&E once more, this time with the privacy to change into a gown, awaiting an X-Ray. Whilst waiting, a finger was placed up my anus.

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The pain was unbearable.

I went for the X-ray, pleased that the technology has advanced enough that I did not need to get out of the trolley. The technology has not advanced enough to get a clear image, but that is by the by. My spine was all a spasm.

Once again, I was offered accommodation, but I chose the comfort of my bed and my flat over a shared ward with old ladies and their commodes. I was prescribed frequent, strong painkillers and home I went. I remained there, spaced out until this morning.

Tuesday 1 July
Today, I had me an MRI scan. It was less painful than I anticipated, but the two diazepams I took prior may have had an impact on my perception of time.

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And now I have to wait… There will be paranoia and there will be pain. I just hope that we will shortly get to the bottom of this.

Myeloma is incapacitating. It needs no further encouragement from spinal difficulties. I will manage my treatment, I do not want to manage the pain on top of it. The pain, this pain, prevents me from living.

I hate it. No roller coasters I can handle. I need to roll over in my sleep.

EJB x

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