Category Archives: Pain

The Know It All

When it came to getting my radiotherapy, I was very much in the been there, done that, got the t-shirt, camp. If there is such a camp when it comes to radiotherapy. I bet there are radiotherapy clubs, but this is just me thinking out loud. I do not want to join a radiotherapy club. Prior to my sessions last week, I had had radiotherapy twice before. Whilst my previous experiences were not without their side effects, if you had spoken to me the week before last, you would have heard me say with great confidence “of all the cancer treatments I have had, radiotherapy is by far the easiest one.” One of my dear friends offered to put her child into nursery to accompany me on my first session, another dear friend offered to take a day off work; both offers were immediately rejected as wholly unnecessary and seen as (a much appreciated) overreaction. 

I thought radiotherapy was easy. At least the way in which I have experienced radiotherapy was easy; in the form of a short five day course or as a one off session. I am not naive or conceited enough to think that the people who require weeks of back to back, daily radiotherapy would classify their experience as ‘easy’. I described myself as a seasoned pro, not to a Medically Trained Person, but in my head and probably on this blog. To the Medically Trained People, I somewhat arrogantly sped through the list of side effects and I had very few questions prior to my consent. I just wanted to get on with.

In terms of usage of time (if you exclude the travel), I suppose radiotherapy is easy, and it is more for this reason that I declined the kind offers made by my friends to accompany me to the hospital. I attended UCLH for five days and only one of my visits lasted for more than an hour. On average, I would estimate my trips lasting no more than 30 minutes. The zaps themselves are even shorter, taking a matter of minutes, or even seconds, it’s hard to tell. It’s not like Goldfinger, you cannot see a green laser coming for you. After my first session on Friday 7th, I asked whether that was it when the technicians reappeared, because I was completely unaware of the procedure taking place. I thought that the machine buzzing and moving around me, was preliminary work before the real deal could take place. That expectation is coming from somebody with prior radiotherapy experience; my memory truly is awful. The majority of time my time in the radioactive bunker was spent taking my clothes off and putting them back on again. 

I do not recall experiencing any side effects after my first encounter with radiotherapy. That was just one zap on my right hip and the only thing left to remind me that I had it, after the pain went away were the three tattoos left behind. My second experience of radiotherapy was not as straightforward as the first, but it did not compare to a week’s dose of steroids. Approximately two weeks after the five sessions on my L1-L5, I endured two days of food poisoning like symptoms due to the zaps going straight through my stomach. This side effect, whilst absolutely horrible at the time, was predicted and after a day or two recovering, was quickly forgotten. 

Less easy to forget, but without the severe sweating, was the scar that treatment has left on my back. Initially, I say initially but approximately six weeks after the treatment, the skin on my back appeared to have been burnt. Burning or sores is a well documented side effect of radiotherapy, so I was unalarmed but itchy, I treated it with aqueous cream as instructed and thought nothing more of it. Approximately 15 months later, I developed Graft vs Host Disease as a result of my transplant and I was reminded of my radiotherapy once more. 

I could go on and on about my back, but all you need to know is that as a result of the GVHD, I still have significant scarring on my back. The scarring is in fact so unslightly that it was commented on several times during my most recent week of radiotherapy. One Medically Trained Person with dulcet tones reminded me to moisturise, to which I politely told her that moisturising would not cure this particular ill. I actually wanted to laugh in her face at the stupidity of her comment, given how many doctors I have discussed this ailment with and how all of them have been left scratching their heads. I did not laugh in her face though, because her comment was only stupid to me (and maybe Mamma Jones) who has lived through the saga, or what feels like a strange X-Files-like marking that is my back lower. 


Exhibit A – I know it is gross

Despite my back and the hideousness of it, going in to my most recent treatment, I still thought it was going to be easy and the side effects minimal. Perhaps it is because I did not have the time to think about it. In fact, when it came to asking questions, I asked only two. The first question, given the fact I just wrote two paragraphs about it and shared a rather nasty picture of it, was about scarring. Of the three areas being treated, the one requiring five sessions was on my upper spine and call me vain, because I can be, but I do not want to have a similar scar that would be visible. One scar like the one I have is enough. It’s a story and an occasional show piece. Two scars, with one of them on a visible area of my neck is just unnessary. Only time will tell if history repeats itself. Unfortunately, I cannot apply the cream provided by myself, so I am reliant on the kindness of others to rub cream into my naked body.

My second question was about diarrhoea and whether I would get it again. Nobody wants to get diarrhoea, especially the sort where your stomach cramps constantly and  sweat falls from your forehead to the floor. Flashback warning! I just recalled having to remove all my clothes whilst on the toilet the last time I had radiotherapy induced toilet issues. I cried too. Horrid. So yes, I don’t want that. Unfortunately for me, I had one off zaps to my T10-L1 and my left ileum; both of which could have gone through my stomach. So far, I had three days of cramping that was easily treated by a few doses of Buscopan (never underestimate the power of Buscopan, I’m an advocate and I believe it should form part of any personal drug stash). 

I am yet to mention fatigue. I knew that the treatment was going to make me tired, especially as the doses accumulated. It made me tired last time and I expected no less this time around. I suffer from fatigue daily, so I thought that it was barely worth a mention. Fatigue impacts so much of my life already, it’s as common to me as water. Nevertheless, I prepared for more fatigue than usual. I purchased ready meals and purchased food that Housemate could cook for me. I bought some plants for my bedroom and replaced my broken aromatherapy defuser, to ensure that my room was a serene and calm environment. So convinced was I that I was going to manage it with relative ease… 

You’ve guessed it. I’m eating my words. I’m chewing down on them, masticating slowly before I humiliatingly swallow them and choke. 

I do not know if it was because I had more radiotherapy than I had had previously; or because I am physically weaker than I was when I had the previous my treatments, but I found last week incredibly difficult. I struggled. Put it another way, it was anything but easy. 

Pain. I was in a lot of pain. Hell, that was the reason I was having the radiotherapy in the first place. Unfortunately, the start of the radiotherapy coincided with a deterioration of my pain. A vast deterioration. I had taken to wearing my sling all the time (bar bedtime) to take the pressure off my back, which did alleviate some of my symptoms but there was a time limit to it. Don’t get me wrong, I felt pain whilst wearing the sling too, I was just in less pain. If I was not wearing a sling, I could not stand up straight. The pins and needles in my arm would be constant and my elbow felt like something was taking a hammer to it. I know I am doing a terribly job at describing my pain. It was in my back, my left arm, my legs, I felt it everywhere. It was all consuming.

As the week of the 10th April started, I had  forgotten one crucial thing, and that was that radiotherapy can cause more pain before it relieves it. By the Tuesday, after I had had two sessions on my upper back and the two one off sessions, I remembered. The radiotherapy seemed to enhance every pain I had. The pain in my ileum became instantly worse. It felt heavy and the pain pounded like a heartbeat. My back, well, my back felt like everything was wrong. I couldn’t lift my head or turn it. I had the occasional spasm. I even struggled to get in through my back door because I couldn’t lift my leg high enough. Essentially, I moved like the pre oiled, rusty Tin Man. Sleeping on my side was impossible. Sleeping full stop was difficult. 

My words do not do what I felt last week any justice at all. Know that I frequently yelped in my pain, occasionally I produced uncontrollable grunts. The pain, as does my pain today, got progressively worse as the day went on. Doing something as simple as getting ready for bed had to be broken down, because the act of taking off my clothes, putting my pyjamas on, pulling down my bed sheets and setting up my five pillow sleeping tower seemed impossible feat. 

Despite fighting to be independent and at times, doggedly so, I relied on Housemate heavily. As I could not bend down, he had to get my food out of the oven, fill up my water bottle, add ice to my drinks, put my post radiotherapy cream on my neck and do up my bra. On the Thursday, Mamma Jones had to drive to London after a full day’ work, and drove me back to her house because I could not lift my suitcase nor get myself to the train station. And because I felt so rundown that I needed the Mum Love and I also though that Housemate needed a break.
The above is not solely the fault of the radiotherapy but it definitely played a part. I do not think that this was a ‘woe is me situation’. I really hope I do not come across that way. I was genuinely scared by how limited my movement became; that should be enough to convey how difficult things became.

In addition to my overly documented pain, there was the fatigue. The fatigue was easier to manage. If there is one thing I am used to managing, it is my fatigue. That said, I did manage to fall asleep in the waiting room of the Radiotherapy Departmemt. I walked in, sat down and within 10 minutes I was fast asleep. I know it was 10 minutes because I arrived at 14.30 and the Technican called my name at 14.40. 

I completely underestimated the toll the treatment would take on my body. It’s radiation. I should have put two and two together. In my head, this was just the equivalent to taking a paracetamol. On the Monday of treatment week, in addition to the daily zap on my C5-T5, I had the one off zaps on my ileum and my T10-L1. Oh my gosh, such was the power, I felt instantly felt sick. It was a miracle I did not vomit in the taxi on the way home. By the time I arrived at my flat, all I could manage was to roll onto my bed after finding an Ondansetron (to manage my sickness) in my drugs sack and there I stayed for 90 minutes in the foetal position. I could not move. Everything felt weak and stiff. I believe my attempts to talk actually manifested in a mumble. When I eventually came round, I discovered that I had dribbled on my pillow and chin. There are reasons why I am single. That evening caught me completely off guard. Once again, I found myself panicking, worrying about the cause of the illness, despite realistically knowing that the cause was the radiotherapy.

Finally, in addition to feeling tired, sick and excruciating pain, the radiotherapy made me sweat. Instantly, after each session, I would have a hot flush. By now, I am used to hot flushes but the post radiotherapy ones were severe. One day, on the first day, I sat in the hospital’s main reception for longer than necessary because I was trying to work out how I was going to wipe my sweat off the plastic seat without anybody noticing. You’d think I would have well rehearsed this move by now, but apparently not. I think the radiotherapy had sent me a little doolally. Or perhaps it is my medication. My reactions and my ability to think feels much slower, less reactive.

A week on from my radiotherapy ended and all I can do is wait. I have no idea if I am going to get an upset stomach in a week’s time, or if I am going to get burn marks on my neck or hip. Not only am I waiting for the bad things to occur, I’m also hoping for the treatment to work. At the moment, I can feel my pain improving slowly. Slowly over the last five days, I  have gradually felt the sensation in four out of five fingers on my left hand return! That deserves the exclamation mark. Truthfully, I do not know if the improvement in my pain level is due to the radiotherapy or last week’s increased medication. I just spoke to a Medically Trained Person and she suspects it is the medication. So, wait some more, I shall. 

So much waiting.

Perhaps me saying that radiotherapy was easy, was wishful thinking. If you say it, it will come true. I know that is complete bollocks, but some sort of positive thinking is a good thing. Right now, as I end yet another epic blog and take in that I had a week of radiotherapy and treated it like it was just a regular day, I realise that I am exhausted. Absolutely exhausted.

That much at least, I know.

EJB x

Advertisements
Tagged , , , , , , , , , , ,

The Gippy Tummy

In the last few weeks, I have learnt many a lesson (okay, four lessons). All the lessons revolve around the medical wonder that is radiotherapy; my view of which has changed quite dramatically from when I previously had the NHS brand my who-ha in October 2012. In short:

• Radiotherapy is not easy
• Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
• Never ever ever wish for a gippy tummy
• If you are a female, always prepare for a radiotherapy session as if you are about to wear a string bikini in public

Since my trip to Casualty in June, I have wanted one thing and one thing only, and that one thing is radiotherapy. My pain at that time was such that I believed that fixing that pain was the only way I would be able to make it through my current treatment. On my worse days, my survival hinged on fixing my pain. Do not get me wrong, I loathe chemotherapy just as much as I know it is a necessary evil, but try being on a course of treatment when you cannot bend down and pick up your bath mat, sit on the toilet or pull yourself out of bed. Maybe reducing my paraprotein should be my priority, but it is not. My priority has and continues to be fixing my back, so I can then focus on that pesky paraprotein. Battling the two at the same time takes energy, more energy then I reasonably have. I’ll use my energy on both if I have to, but my effort in doing so is a disservice to both. My pain has taken away too much of my freedom and I just want to reclaim some of it.

The journey from discovering the first twinge of back pain on 27 May, to completing my course of radiotherapy treatment on 29 August has been mercifully quick. Three months may sound like a long time, but all things considered, it has not been that long at all and that is just another prime example of the brilliance of the NHS.

It may have taken a month or so to convince the Medically Trained People, with Operation Radiotherapy, that I could not wait to see if my treatment alone would heal my back, but once that was agreed by the end of July, everything else happened very quickly. Operation Radiotherapy was far from subtle and essentially involved me only talking about my pain during my appointments, much to the dismay of Big Sister who wished for me to discuss my treatment plan. I may not have been subtle, but neither was my pain, which had decided to occupy almost every waking thought, especially the thoughts that came when I attempted to move in my sleep.

On the 6 August I was informed that I would be having radiotherapy and it was most probably going to be in the form of five sessions over five days, targeting the tumour around my L5. I was ecstatic at this news. I know I was ecstatic because I wrote a blog about it. It was during this appointment that I was told that I may experience a gippy tummy as a result of the radiotherapy. Thirteen days later my treatment began.

I did indeed have five sessions, on five different days, but due to the Bank Holiday and my need to see Kate Bush in concert, it actually happened on a Thursday, Friday, Tuesday, Thursday and a Friday. A week prior to the first session, I had my planning appointment, which featured two new tattoos and a CT scan. By the Tuesday session, I was incredibly relieved that I had some respite between zaps and I was not due in everyday. I do not think my body would have been able to handle it. It was a four-five hours a day for two minutes of radiation, and I am a weakling.

The Radiotherapy Department at UCLH is a strange place. It is in the basement of the tower and thus as I waited, I had no phone signal to keep me company. The waiting areas are very much designed for patients receiving the treatment for usual cancerous reasons. They were not designed for people getting radiotherapy to ease their pain. It may sound like a small thing, but waiting for upwards of an hour on a hard departure lounge style chair is not something my spine particularly enjoys. Add that with having to lie down on a slab for ten minutes, bookended by hour plus journeys in a suspension free ambulance chair and what I got was immense jarring pain.

In the secondary waiting area, the opaque windows are adorned with pictures of butterflies and stars accompanied by quotes about the brilliance of nature. This of course, made me guffaw at the thought that somebody, somewhere, believed that this would relax somebody with cancer. It was in stark contract to the stark room with the big whirling machine hidden behind a maze of iron lined corridors. In these rooms, there are six identical rooms, there was a screen for me to protect my modesty as I removed the bottom half of my clothing. I am not entirely sure why I needed to protect my modesty with a screen, when my knickers would be pulled below by bum during each session, when I was lying on the metal slab, with a piece of blue paper over my nunny.

IMG_0049.PNG

IMG_0050.PNG

I found the whole thing incredibly exhausting.

After the first, second and fourth session, I vomited. Vomiting is not a side effect I am particularly used to. I thought I was used to everything. I may have had a stem cell transplant, but vomiting, thankfully, bar a few other occasions on my HRT, had been my only experience of being physically sick. Nausea sure, I live with that daily, but vomiting to me symbolises being unwell and until I experienced cancer, is one that I heavily associated with people having cancer. On the fourth day, I lost a very nice sandwich from Benugo’s. I did not like it. It made me feel like I had cancer.

On days 1-5 and for several days post, I experienced extreme fatigue. After the first session, I got into bed at 19:00hrs and emerged the following morning. Three days after my last session, I was so tired, I forgot that I was crashing on my steroids. Fatigue was not a side effect I was told to particularly expect, but I think that radiotherapy and chemotherapy is something of a toxic mix, and my body was just displaying that for all and sundry.

On the fourth day, I also had my regular clinic appointment, during which I lambasted the false claim that I would experience a gippy tummy. I did this because I am a fool and did not associate vomiting with what one could consider a ‘gippy tummy’. I was just fed up with being constipated that I thought I would welcome a good, thorough cleaning. The treatment finished on a Friday and by Sunday, I was cursing myself and the pain in my stomach. By the Monday evening, after I had spent four hours on the toilet clearing my bowels, I was cursing the radiotherapy. I am a self styled ‘Strong Ox’, but slipping off a loo sit because my naked body was drenched in diarrhoea induced sweat, was enough to make me doubt my stoicism. The next day, Haemo Dad put me in his car on the advice of the Medically Trained People and took me to A&E.

I like to think that my four hour adventure to Peterborough City Hospital was not an overreaction and was a well considered precaution. It was a precaution for many reasons, not least because four days before my neutrophil count was 0.85 and there was a fear that I had an infection. To me it was a necessity because I needed reassurance that everything would be okay. I know many side effects and I know how I should feel on almost every occasion. I had no idea what was happening to me and that scared me.

Haemo Dad had to go off and do some Haemo stuff in PCH, so he was replaced by Mama Jones who waited patiently with me until I got the okay to go home after I was given some fluids and IV paracetamol. As an aside, I can confirm that IV paracetamol can give one a nice, deep sleep.

In my private room, having waited for five minutes to check in with my fellow citizens in the reception, I was rather impressed with the treatment I received. It was thorough, and it was delivered by a Person Medically Trained Funded By The RAF, which led me to seek confirmation that I was not hallucinating. Obviously, for anybody who has ever inserted a cannula into my veins or has been present when somebody else has inserted a cannula into my veins, I was rather less impressed by the size of the cannula (I think I am spoilt at UCLH), or the blood that bled when the tube was removed. It is 15 days later, I still have a bruise.

IMG_0048.PNG
Evidence that I made a third visit in two years to Peterborough’s A&E.

After six more days of sleep, liberal doses of Buscopan, and a £34 round trip to have my bloods done, I felt back to normal. As I said to my CNS, normal to me means heavily constipated. As well as feeling constipated, I also felt embarrassed that I went into my radiotherapy thinking that it was nothing. Not only nothing, but I went in thinking that it would be easy and welcomed the predicted side effects. I was wrong. I would not want to go through it again any time soon.

Time will tell whether the treatment worked. This week, my back hurts more than it has for a month and I hope this is a sign of the radiotherapy is working. I just don’t know. If this whole affair has taught me anything at all, it is that when it comes to My Myeloma, nothing is ever certain.

🙏

EJB x

P.S. Blame the fatigue for the length of this blog; I certainly do.

Tagged , , , , , , , , , , , , , ,

The Regimen

When it comes to the hospital and my appointments at the hospital, I am a creature of habit. It’s comforting for me to know exactly what I am going to do when I get to the hospital, know exactly who I am going to see and where I am going to sit. UCH’s Haematology Department has long facilitated my need for routine. I come in, I bypass the accepted booking in procedures, I go to the fourth or second floor, via the lower ground floor and I am done. Along the way, I will come across several faces who have seen mine before and are kind to it. I am made to feel special and that my pals, is because I am.

Today at the Cancer Centre, otherwise known as my office, I was in a state of flux. My routine had been altered. I was not being seen by anybody on the second or fourth floor. I was forced, forced I tell you, to check in with all the other mortals on the ground floor on self service machine. On a machine! Instead of just disappearing to a place where people can identify my clinic by my face, I had to wait on the ground floor for my name to appear on multiple large tv screens. I think I have only done this once before. Not one to voluntarily fade into the background, I decided that the best way to wait for my non-Haematology appointment was to tell anybody who knows me that I did not know what I was doing. It was not a lie as such, because I did not quite know how the clinic works, but I will put my hands up and say that I was being a little needy.

I chose not to wait for my name to appear and instead asked a volunteer to inform me of the event, so that I could sit in the air conditioned abyss that is Macmillan Support. I did not ask just the one volunteer either, I asked at least three people to tell me when my name appeared in lights. I think, I was excited about the appointment ahead of me. As it turned out, the preparation I felt was necessary, was in fact, unnecessary. The appointment system at the centre, which I chose to never follow, is rather slick, and I was sent a text message informing me that I needed to visit the first floor.

20140806-132551-48351338.jpg
Technology is just a wonder

I will be honest, I did not like the first floor. The flooring was loud, and the other patients felt the need to monopolise the seats and bash me when they walked passed. It’s okay though, I gave them all the eye and took a photograph of the artwork. Also, and most crucially, the staff on the floor did not give me the recognition I usually attract. Again, with the special. I am special.

20140806-132742-48462354.jpg
Trust me, this was not age appropriate

Fortunately for me, when the time came for my actual appointment, a mere 30 minutes after the initial appointment time, I got that special treatment I demand and expect. The Medically Trained Person, who specialises in radiotherapy introduced himself and said that we had not met. I was unsure about this statement, but he confidently told me that if he had met me, he would have remembered. Obviously, this made sense to me and I took him at his word.

After five minutes, it was clear to me that stepping outside my myeloma comfort zone pays off sometimes. It has taken several weeks of talking to the People Trained in Myeloma to get a referral for radiotherapy. It has been a subject that has never been far from my mind since I heard the word ‘relapse’. Even today, I feared that the appointment was just a referral and I would be told that radiotherapy would not achieve anything. I just wanted a chance, something is better than nothing has been my motto. It looks like the Medically Trained People agreed, for my appointment was simply designed for me to sign a consent form. Radiotherapy is a go. I repeat, it is a go.

I have every hope that it will pay off, for it has been confirmed that in two-three weeks time I will be having five sessions of radiotherapy on my lumbar region. I simply cannot wait. I had radiotherapy on 22 October 2012, and I have not been bothered by my hip since. Sure, I’ll have to spend five days in the Radiotherapy Department, where if memory serves, one is spoken to with a constant head tilt, but if this means that my pain reduces by a fraction, it’ll be well worth it. In fact, I would go as far as to say that it would mean a great deal to me. If successful, it may even permit an uninterrupted night’s sleep. I am a simple girl with simple needs.

I have had radiotherapy before, but I do not feel the need then was a great as it is now. As a bonus, I was informed by the Medically Trained a Person that not only was he going to fix some of my damaged bones, a side effect of doing so may be loose stools. Score. 💩

And now all I have to do is wait… Trust me, I will no doubt have a thing or two to say about having treatment in the big tower, where nobody knows my name, but if it means I can walk just that little bit more, then hell, let’s change up the routine. Just this once.

EJB x

Tagged , , , , , , , , ,

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.

20140710-115323-42803933.jpg
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.

20140710-120348-43428752.jpg

EJB x

Tagged , , , , , , , ,

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.

20140701-160320-57800770.jpg

20140701-160320-57800566.jpg

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.

20140701-164245-60165397.jpg

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.

20140701-164945-60585557.jpg

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

Tagged , , , , , , , ,

The Mobility Enhancer?

Today, apart from the work and the tiredness and normal feelings of insignificance, I am awash with excitement. Dare I say it, the excitement is palpable, that is, if I had not spent my day talking about risk management. I am excited because tomorrow marks my first physiotherapy appointment.

A build up to anything causes excitement, or apprehension, if your glass is half empty. On this subject, my glass is three-quarters full. I was referred to the physiotherapist in December and a mere four months later, I actually get to see whether it is worth it. It’s been a longer wait really, for I asked for a referral when I was on PADIMAC, way back when in 2012. I believe on that occasion, my request was immediately dismissed as folly.

So much hope for my immediate future rests on the success of it. One could say that I am setting myself for disappointment, but keep up, my glass is half full. I do not have a barometer for improvement, I do not know what improvement will look or feel like. Right now though, I think that anything is better than what I have right now and what I have right now, much to my initial denial, is chronic pain. That is pain, to varying degrees, everyday and every night.

I am a realist, it’s not going to get me doing cartwheels nor is it going to get me on a roller coaster, but it may mean that I can stand for longer than I can stand right now, or sit for longer than I can sit right now. I might be able to be seen less often with my walking stick. It may possibly be able to walk that little bit further, or walk that little bit further and not have to hide the pain I am in, because I am not in any pain. I then, could try and address my ever expanding waist and boost by deflating confidence by being able to be that little bit more active than I am at the moment. It might even lead to me not looking at Vauxhall and Lambeth Bridges with longing and melancholy, remembering my lunchtime walk of old. Maybe, I’ll be able to look in the fridge without worrying if I will get up again. Then, there is the prospect of being capable of glancing at my blind spot. Hell, it may even allow me to think about my body just that little bit less than I do at the moment.

The sky is the limit, or put another way, anything is better than nothing and that excited me.

In case you are thinking that lytic lesions cannot be cured by physiotherapy, let me bring you up to speed. December’s MRI scan found that my lesions were improving and it was suggested that the continued level of my pain was part muscular, and thus, I may benefit from physiotherapy. Not just any old physiotherapy, tomorrow, I will be stepping foot into a magic place called the Royal Hospital of Integrated Medicine. The building is a shit hole, but hopefully, beauty will be on the inside.

Tomorrow, the chances are, I will be singing from a different hymn sheet, but the hopeful part of me, today at least, is getting just that little bit excited. It won’t happen over night, but who cares? I love a project.

EJB x

Tagged , , , , , , ,

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.

Tagged , , , , , , , ,

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 (https://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.

20131203-094740.jpg
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

Tagged , , , , , , , , ,

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

Tagged , , , , , , , , ,

Patent

Wanted – Somebody Who Is Good With Their Hands

Ever wondered why you never see a person walking with a walking stick and an umbrella? Even seen somebody walking with a walking stick getting absolutely drenched in the rain and thought, that’s sad, it’s unfortunate they do not have an umbrella? Or have you ever seen somebody with or without a stick, struggle to hold their umbrella for a period of time and pointed them out to your companion, as a pathetic weakling who does not have the strength to hold an umbrella upright?

Rain brings a multitude of dilemmas for the crippled. Going outside can be like Sophie’s Choice. City living really can be traumatic. Something needs to be done to protect the needy from excessive moisture.

****************************

The time thus, is a time for action. Action and innovation.

****************************

Have you ever wanted to help the disableds and did not know what you could do? Do you always feel like you could be more charitable? Are you handy with some tools? Do you have an overwhelming need to show off your skills? Can you weld? Can you smell titanium?

If you have said ‘yes’ to one or more of the questions above, then maybe two can become one, to create something rather special. Not a baby you fool. Despite having a wealth of creative imagination, I have little skill, it pains me to say in manufacture, crafts and neatness. I am seeking somebody to execute my creation of the walking stick/umbrella combo. The Walking Stick/Umbrella Combo (working title only). The device appears to be a standard walking stick, but the handle either stores an umbrella or holds a weightless umbrella attachment, allowing the unfortunate to protect themselves from the rain, without having to sacrifice their walking support or changing the position of their hand. It’s ingenious. I know, you don’t have to tell me.

Artist’s impression on graph paper

20131013-141552.jpg

20131013-141600.jpg

So, if you think you can assist and we can make millions, do seek out contact.

If like me, you have no talent in this area, or simply, if you have no desire to take time out of your physically enabled life, then that is fine. There is no issue. No issue at all. You cannot help me. That’s fine. Just fine. I don’t care.

Emma Jane Jones
Designer

P.S. If you are feeling thankful right now that you can go out in the rain and hold an umbrella, and this sorry for those who cannot, but you cannot help my entrepreneurial ambitions, maybe just help out some cancer patients or something. Paul tells me he is going for a jog of some sort, in the east, it’s not quite welding metal, but it’s something. Here’s the link https://www.justgiving.com/PaulTompsett/
If you cannot shower my scheme with money, shower Macmillan via him.

Tagged , , , , , , , , ,
%d bloggers like this: