Category Archives: Cancer

10 Hours In London

Following my latest Bad News Day, I’m not sure if we can classify it as the Ultimate Bad News Day, but after whatever a fortnight ago was, things started to happen very quickly. Last Friday evening, when I had a chance to stop, I reflected that I could not believe so much had happened in a simple space of a week. As you can assume, it was a riveting conversation. A lot happened that week, but for this blog, I am only going to tell you about what happened on Monday 3 April. Firstly, it means you’ll have to read the following blogs and secondly, I enjoy the WordPress alerts that say ‘your stats are booming’. Well done, all 100 of you. I deserve more than 100 of you, but again, that’s not the purpose of this blog.

Mamma Jones and I departed Peterborough on the 10.08 train that day for an appointment at St Bartholomew’s Hospital at midday. At this point in time, I was not entirely sure why I was going to Bart’s. The last I heard was that I may have got into a trial at the hospital and I was going there to talk about it. Initially, I had thought that this appointment would take place a week later, but the hospital wanted me in as soon as possible and when you are dealing in possible clinical trial spaces, I was willing to do whatever the hospital wanted me to do. Even if that meant getting up early and getting a train to London, when all I wanted to do was rest my aching bones. 

The familiarity with returning to St Bart’s was overwhelming. The clinic I was attending started at 9am and my appointment was for midday. On a very practical level, this meant that waiting would be required as the clinic would have had three whole hours to run late prior to my arrival. 

The waiting room in the East Wing had gone unchanged. I don’t know why I was expecting it to have changed. I lie actually, in my absence they had upgraded from lukewarm jugs of water to a standalone water cooler that dispensed more lukewarm water. The room itself, still holds far too much heat and there are still insufficient seats to accommodate the number of people who attend that clinic. People seem to sit wherever they can find a ledge. It looks so untidy, with patients sat incredibly close together on plastic seats, facing various directions whilst other patients sit on the seats fashioned from oversized window ledges that are too deep to be sat on with any type of decorum. Wheelchair uses find space next to the window seats, but there is no designated spaces that would indicate an area where a wheelchair user has stopped on purpose rather than just finding themselves next to a plug in heater in the middle of a corridor. Needless to say, it is an environment that feels cramped and overbearing. My previous visit to Bart’s had been about a year before. Desperately trying not to moan, the oppressive nature of the room, and my imagined but fierce belief that plus ones would never give up seat to a young myeloma sufferer, immediately put me in a bad mood. 

I tried to read, I thought perhaps reading would make the wait seem more bearable. Not that I knew what I was waiting for. Reading proved to be impossible because that room carries sound that I could not escape from. Any conversation that did not originate from my lips on that day, was pure and utter, superficial nonsense. My attempts to read just encouraged me to look at the other patients and declare them evil for interrupting my novel. Housemate dropped by briefly during this time to deliver a much needed packet of Refreshers. They helped. But we were still waiting. 

Maybe I was being too dramatic in wondering why we had been summoned there. Logically, I knew I was there to discuss the trial and hopefully get on to said trial. I know what my problem was, I didn’t want to get in to see the Medically Trained Person only to be told that it was all a gigantic mistake, that I wasn’t on the trial and that I must have misunderstood something four days previously. This trial literally is my chance to prolong my life. I did not want to hear about any mistakes. . 

Irrational concerns about my hopes being dashed after nearly five years of having myeloma, are not so irrational. 

I was eventually called through at 1.25. It was time. Time for what though? We did not have a clue. 


Like I said, we did not know what to expect. Was I going to have to pass a number of tests? Was there a written word exam nobody told me about? Would the Medically Trained Person not put me on his trail if I started to have a hot flush and as a result of hot flush leave a damp mark on his chair? I just did not know. I was not privy to any of the discussions that led me to Bart’s. 

So, up the river without a paddle, I walked through the double doors, followed by another set of double doors until I reached a single door and knocked. The Medically Trained Professional opened that door and  in we went. 

Inside his office, ready to greet us was a Medically Trained Person I know well. He, my doctor throughout my last transplant, was smilin, actually smiling at me which made a refreshing change from the previous week’s tears. I am a simple woman and I appreciated the familiarity. I’m surprised he did not automatically call me ‘Em’, which had had started to do when I was last under his care. 

I would categorise what followed as informal. We did not have an in depth chat about the clinical trial (Daratumumab). I was told that there was around a 30% chance of it working. I reasoned that that 30% was better than trying nothing at all. The word ‘antibody’ was mentioned a few times but not enough that I actually understood why. Then, probably within five minutes of us entering, the Medically Trained Person signed a white piece of paper and said that was his consent for the trial. 

Could it be that without any blood tests, biopsies or an explanation, I was on the trial? Apparently so. Even now, I loathe to jinx it.

And with that, I think I expressed enormous gratitude, and then we were ushered out of the office with a few sheets of stapled white A4 paper containing a very important signature, and that was it. Well, it wasn’t quite it, we still had to go and see the trial nurse, but that was it for our time with the doctor. Clutching the consent form  and looking at my mother in disbelief, we made our way up to the seventh floor of the main building, otherwise known as the cancer centre. 

St Bart’s cancer centre, despite the view was just as foul as I remember. We did not get past the waiting area on our visit but that area was filthy. There was rubbish everywhere and unhappy people sitting amongst yet more plastic chairs waiting to be called through. I do not know if I imagined it, but I am sure there was actual rubbish littering the waiting area and mug rings decorating the tables. I did not imagine that the adjoining toilet I used, was soiled with stains all over the floor and toilet seat. How does this happen by 2pm in the afternoon? I know that people are sick, but really? What does it say when patients don’t respect their treatment area enough to keep it clean? I’m not going to answer that because I am very thankful to be transferring to Bart’s and I think it is a wonderful Hospital. 

This s a blog about how much I love St Bartholomew’s Hospital and not one where I highlight all of it’s faults. I really do love St Bart’s and I am pleased about being transferred there. Honest. Honestly. 

Amongst the debris, Mamma Jones and I read through the literature I had been given and then I signed my life away, consenting to everything they asked me to consent to. A skim read would be the correct description of what I did. I was beginning to get tired. Since I was diagnosed with Myeloma, I have consented to many things and I can confirm that there was nothing exceptional about this form. Let’s hope the subject matter proves to be exceptional, but the form itself? A form is a form is a form. 

After a few minutes, we met the Clinical Trial Nurse. Not that I am picky in anyway nor does she have massive metaphorical shoes to fill when it comes to making me feel comfortable with my care, but I approved. We discussed the practicalities of the trial and I handed over the stapled bits of A4. 

I was then weighed (dropping a full half kilogram from my morning’ weigh in), measured and my blood was taken. And that was it. I was sent home. Practicalities, like the start date of the trial were to be decided once my dates for radiotherapy had been confirmed.

Was that it? Was that all that was needed to get me onto a trial that has a 30% chance of prolonging my life? I do not not know what I expected. I did not even get the chance to express my gratitude to such an extent that it made everybody feel uncomfortable. I didn’t learn about the ins and outs of the trial. I just stipulated that I did not want a semi-permanent line and said I still wanted to be able to go on holiday. 

It’s now over a week since that appointment and I still do not want to do anything endanger my place on the trial. As the rest of our correspondence has been done over the phone or by email, I am afraid that they are going to discover something catastrophic. It doesn’t even need to be catastrophic, it could be something perfectly innocent that could effect my place on the trial. This week I almost took some extra steroids, and even those could have impacted on the trial. 

It cannot be taken away.

On the subject of steroids, no tale of our day in London would be fully complete if I did not tell you what happened after we left the hospital. By 3.45pm, I was absolutely ravenous. By that point I had been on a high dose of steroids for four days, we had missed lunch and I really was ravenous. Well, I was tired first, hungry second but I knew that if we fed the hunger, Mamma Jones would be accompanied by a much nicer me on our journey home. 

We went to a restaurant and I am most thankful that the restaurant was quiet, for I sat down and ate a starter of calamari followed by half a chicken and chips. Once I was finished with my chicken, I finished my mother’s. Mamma Jones’s chicken was not included in my half chicken tally. I couldn’t stop. The least said about this meal the better, but in short, I could not stop eating. Afterwards, we travelled to Kings Cross station where I indulged in yet another banana milkshake. Then, and there was a then, when we eventually arrived home at approximately 8.30pm, I had a bowl of porridge with Jersey milk. Steroids

Steroids are responsible for a lot.

Straight after I ate my bowl of porridge I fell asleep and I stayed in bed for the next 36 hours. Our 10 hours in London, wiped me out. I know that it is understandable, but I was still surprised the following day to find myself incapable of getting out of bed. The exertion was worth it. Meeting with the staff at Bart’s and albeit briefly discussing the next steps made me feel like things were moving quickly and they were moving in the right direction. I know that the odds of this working are extremely low, but I feel positive about it. Well, I feel ready for my treatment to start and I am not going into it thinking it’s going to fail…So, yes, that’s something. 

I cannot quite believe that I am on the trial. I do not know how these things work, but I know that in terms of criteria and timings, I am lucky. I know that Myeloma patients don’t get ‘lucky’, I’m fortuitous. 

I know (because people have told me, not. because I have done any of my own research) that it is incredibly difficult to get on any dartumumab trial in the UK and it is for this reason that I will not let myself fully believe that I am on the trial. I might have signed the papers. I might have  completed the pre tests (I haven’t actually completed the pre tests, I still need to do a 24 hour urine sample). I might have been told that I am on the trial. I just cannot, until I watch a very slow infusion enter my body this Wednesday believe that I am really on the trial. At that point, I might doing a celebratory fist clench and feeling a tiny bit lucky. 

EJB x

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Pleasure

I have been pondering in recent months the following question, it’s a question that goes round and around my head until I am down the well worn A road wondering about the point of my existence. It is a question that comes without innuendo despite the way I have decided to word it. It’s a question where to answer in the negative terrifies me.  The question, my friends is ‘can I experience pleasure, anymore?’

I suppose I could have substituted the word ‘happiness’ for ‘pleasure’, but I feel happiness is something that can be temporarily achieved in a 22 minutes episode of Modern Family. Pleasure, to me anyway, is something else. It’s prolonged and it involves satisfaction. Something meaningful that isn’t transmitted through my television. 

It has been a long dark autumn where I have felt that all pleasure and all opportunity to feel pleasure; that the function for which has been removed from my brain. I don’t laugh anymore. Long gone are the days when the innuendo sort of pleasure was met; melphalan and menopause put paid to that years ago. I’m not worried about that. To the all encompassing sort of pleasure of which I yearn, I don’t know what it should feel like anymore. How much did I really laugh before?

There are many days when I find myself waking up, knowing that the day ahead is going to be much the same as my previous day, and as with the day before, I will spend it going through the motions. Not emotions you understand, just motions. 

I don’t have a job, I get tired washing myself, there is not a higher purpose to my life most days then just taking my drugs, patting the dog and making sure I am out of the bed before Housemate gets home. I don’t have the functionality to do anything else.

I suppose, I do the absolute minimum to survive, especially on the days of steroid crashing and Ixazomib spewing. I wake, I sit, I eat and all to the soundtrack of my television. 75 percent of the time, I could not tell you what I have watched from one day to the next. I probably could not tell you everything I have watched today. 

On the days I can move further afield, I do the things I used to do that entertained me. Except now, they have to be done within a very tight social security allowance budget,  pass the necessary  considerations (constraints) like walking distance, seating and distance from home, before I can even leave the house. Evidentially, there are a lot of things I would wish to do that I cannot. Despite these obstacles, I do, somehow, manage to pass the time.  The most common feeling I get on return from any of these jaunts is, exhaustion. 

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Is it the Larozapam my brain asks? Is this indifference I have allowed to develop towards my life due to the multi-use drug I take to prevent nausea but others take for sedation and anti anxiety?  Or, is it one of the other 12 different medications that I swallow on a daily basis that has stopped me being able to feel? Have they brought this shield down that I cannot penetrate, and the weight of which leaves me all so very fatigued? Internal feeling of apathy, anyone? 

Of course, there is another theory. This one might be my favourite. I wonder if I no longer feel pleasure because I do not want to feel pain. Have I, since my relapse put myself in to an ultimate self preservation mode? Should I patent it? If I cannot laugh and feel happy, then surely that’s a decent payoff to not feel constantly scared and alone? For four years with My Myeloma, I was waiting for something positive to happen, it didn’t.  The sad truth is, I am now waiting for the ultimate bad thing to happen and I am praying that that does not come too soon.

Bar one week in October, I have not had a midweek outside of my bed  since I started my current drug regime five cycles ago. It’s an enslaught. Any strength I build up in the days pre drug crash, is depleted on the first day post my Dexamethasone and Ixazomib dose. Then with each day that passes, my reserves run lower and lower. Concurrently, for every time a loved one forgets that I cannot do anything on a Tuesday or Wednesday (and possibly Thursday) and then they invite me to do something on a Tuesday or a Wednesday, I go into the red due to my frustration, anger and plain old green jealousy. My life is lousy enough without having to repeat it five times a week.

In my last blog, I spoke about death. Not because I want to die, but because I fear that is what is left for me now. I hope it is not imminent, but all that depends on a variety of factors I have no control over.  It’s not the place or time to discuss these things in this blog, but I saw a figure a few weeks ago. A potential timeframe, and I really don’t have the capacity to think about what that means for me or for those in my Support Network, and if it is possible to balance that with the quality of life I have now. There are days when I would feel better off. 

It’s becoming incredibly hard for me to consider myself as anything other than an expensive perishable with a limited shelf life. Sure, I am Emma, I am EJ, I am me; but what does that mean now when so much of my identity has been erased? Most the time, I feel like a stranger to myself. 

Am I lacking pleasure because I am still the pre Myeloma version of me, just significantly shorter with less limbs, whilst everybody around me has managed to grow, some have even gone as far as to grow whole new humans in the four years that I have had this wretched disease?  

I was once told that my situation was too depressioning to be around frequently, so the easiest thing for somebody to do was to cease all communication and live their lives independently of mine. Understandably, I  worry about this becoming my legacy because I will not mprove now. Everybody wants to be around you in the first year of Myeloma; the numbers dwindle somewhat thereafter. 

The insecurities this has left me with are profound. I  try to avoid talking about myself (she says in a rather lengthy blog about herself and rolls her eyes) as much as possible. But then, what else do I have to talk about? I’ve already said I don’t have a job and I don’t remember what I did yesterday. Has my monotony made your pleasure disappear? Have I made you runaway yet? 

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There you are! 

Did you know I had a point at the start of this blog? It wasn’t that I am a bad editor,  because I think I have proven that point with what I have written above. No, my point was that my pleasure has not been lost in self pity. I have recently returned from a much needed two week break away from my medication. I currently have no idea what that two weeks away from medication has done to my body, but I know what it has done to my mind. It’s called perspective my friends and a dark cloud has been lifted. Not eradicated mind, lifted. 

It’s harder to see and it’s harder to earn, but believe it or not, I do still experience pleasure. Not the innuendo kind unfortunately, which makes my four weekly pregnancy tests quite the waste in resource. 

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I lost sight of my pleasure for a little bit; for five months in fact. I lost it all to fatigue. Fatigue has literally been ruling my life and I cannot emphasise this enough that fatigue is not just restricted to feeling sleeping. For me, everything slows down, everything becomes harder and everything whether it is an email or an existential crisis, seems a  much larger issue than it actually is.

Looking back, there were hidden and frequent pockets of pleasure throughout the last five months. The windows to enjoy myself are smaller and further apart but pleasure can be found and it has been experienced. By me. 

To emphasise my point, here are a few examples: any conversations with my nieces, being a party to Treat Yourself Sunday, talking Christmas wrapping with Big Sister, watching a movie at a friend’s house or maybe, just maybe bending the rules a little bit and staying out past midnight once in a blue moon. Or, it could be something as simple as saying goodbye to somebody and walking away with a smile on my face and a spring in my step. It’s in knowing that a friend cares enough about me to swim a mile a day for 26 consecutive days to raise money for Myeloma UK (https://www.justgiving.com/fundraising/Emma-Boucher-Matthews). It’s going to the cinema whenever my body allows it, not falling asleep and writing about it in my little black book. 

In October, my some miracle and a little bit of understanding from the Medically Trained People, I was able to once again attend the London Film Festival 15 times in spite of my treatment. I got dressed and put makeup on everyday. I felt learned and alive until I got tired and had to spend a week in bed once it was over. I did not end up celebrating the 10 days I spent enjoying the festival, I wallowed at how quickly my body went downhill.

Most recently, I went on a holiday. An actual holiday. With a lot of help from Mamma Jones, I used my passport and I opened my eyes. From the minute we left these fair shores I experienced pure pleasure.  The holiday gave me a swift kick up my derriΓ¨re, and reminded me there is pleasure to be found everywhere. Even when the prognosis might not be what I want it to be. I need to find a way to remember this the next time the tough gets going.

Above everything else, I need to remember that my life is not a foregone conclusion yet, and I should not be treating as if it is. And,  in the words of Uncle Albert I also need to remember that  ‘I love to laugh. Loud and long and clear’. I really do want to be a merrier me.

EJB x 
P.S. There is still time to sponsor my friend’s marathon swim, which she completed yesterday. Just use the link above. 

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My Finest Hour

Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog.  I am far from finished with the blog; that was clear. What was not clear, was how I was going to rip off the gargantuan plaster covering my keyboard and get my thoughts to screen after such a long break and such a massive development. I know I have been neglecting this blog, but do not think I have not been thinking about it. Every other day I look at the WordPress app on my phone, a reminder of my world and I challenge myself to finish a blog that day. Clearly that failed. I get distracted. I probably had to wash and focus on my fluid intake. I am all so easily distracted. 

Where was I? Yes, the story I am eventually going to to tell is far from being hot of the press. In terms of speed, if I were a missionary in Africa in at the start of WW1 writing home to tell my family I had fallen in love with Humphrey Bogart, the news of said union would probably have found its way to my family long before I could find the words to explain the last few months of my life. 

In my defence and I have a big one, the last few months have been an exhausting and confusing blur. Contrary to what it may look like, I have very limited free time. My main priority has had to be me working out how I feel and how I want to hold myself, which is closely followed by doing daily tasks like washing, eating and forming sentences. No mean feat, all things considered. 

To produce something, something not soaked in self pity and embarrassment, it was impossible for me to immediately put all of this in my blog. Please don’t misinterpret me, I have a lot of words in my arsenal, I just do not seem to have the capacity to put them into any form of working order with a hint of wit. My Myeloma has dumbed me down. I have had a strong  will to write it, but at each start attempt, if I managed to get any  further then the first sentence by inner monologue would start  singing a tune of my own creation called “Blah” or I would want to play at Candy Crush and think of nothing. The words would the be lost and more often than not, I then fell asleep. I would then wake, I may be sick and then the cycle starts all over again. It’s an invisible pressure that only I see. I am all too  aware that I will get a crispy clear clarity once my words are published out in the Internet ether, but it’s just being able to get in there…

So yes, your forgiveness is something I ask for. I now recommend that you buckle in tight for this is going to be a long one, for this, all of this, has been anything but my finest hour. 

My last blog post was a boast, it was not even my boast, it was a boast made by a Medically Trained Person. My life was on track, I’m not sure what track but I was moving in a direction with less drugs, regular stools and finances. I had trepidatiously allowed myself to think more than a month a head. I was moving in a direction that excited me, secretly hoping for and  releasing my grip on the thought that My Myeloma was never far away…

As it turns out, I was not far away. Some time after the ‘sweet spot’ comment, I went to St Bart’s for a clinic appointment that I thought nothing of other than my attendance was a requirement. I had become comfortable and my guard was down. Imagine my horror then, when after a lengthy silence and grimaces of concern, the Medicaly Trained Person told me that after months and months of nothing, I had a paraprotein of 4. I don’t really remember what happened after that. I know we discussed scenarios and she tried to but a positive spin on it, but I knew there was only one direction for this development and it was not an error on the test. I had felt it in my bones for weeks but I had been reassured that my new pain was nothing to worry about.

In that morning, I did not cry. I stopped talking. I had one desire after that appointment and one desire only, and that was to get home. Unfortunately, I had to queue for an eternity at phlebotomy and then at the pharmacy before I  was allowed to go home. By the pharmacy, my tears were involuntarily coming and it remained that way for several hours. By the time I had walked in my front door and tried to get the words out to Housemate, I was on the floor. The guard was truly down.

All the fear I had about this being the worst relapse I would ever have, the relapse after the hit and hope of allograft, came out of me that late afternoon on my hallway floor and then in my lounge  and I have been dealing with fact ever since. 

It’s Failure. I feel like it is one big failure. I need to be absolutely clear on this point, the fault is not my donor’s, My Big Sistee’s. She did everything she should have done and more, my body just failed me.I feel like I failed her and everybody else who was hoping for a happier ending for me. I even feel like I failed the people not wishing me well. Trust me when j say that this is not hyperbole; I  was and remain devasted. 

The weeks that followed were bad. I had slipped deep into a black hole. It was the deepest, darkest pit of a black hole that I tried to keep to myself. I was so embarrassed by this happening once again, dominating lives once again,  that bar a handful of people, I kept all developments to myself. As well as worrying about losing my life, I feared this would be a development that would lead me to losing people. I have to be in bed by 09.00pm for goodness sake and I cancel my plans all the time. 

I had to wait for what felt like weeks, but really it was only a matter of days, to find out how bad it all was. I fixed my thoughts on it spreading, questioning why my pain had increased so dramatically, so quickly, self diagnosing secondary cancers with aplomb, and then plotted what the next steps would be, all without talking to a Medically Trained Person. The 2016 I had envisaged for myself was quickly slipping away from my grasp. 

For the first time since all this started over four years ago, I asked myself whether it was all worth it. I questioned whether I wanted any treatment at all. I didn’t know what my treatment would be. As far as I was concerened, in my darkest thoughts, I was on a one way track to palliative care. To add just that extra bit of sweet icing to the cake, I was also managing a fast deterioration of my bones. The pain was constant and restrictive;  and  included no bending, assistance required getting out of bed and off the toilet and no picnics to name but a few. I still worry about travelling long distances along in case I get too tired. I have once again lost my independence and I didn’t feel like I could share it with anybody. It was too sad.

I couldn’t talk to anybody about this. Perhaps the scariest thing of all were my thoughts about how I would die both naturally and unnaturally, as I tried to decide which option would be best. In those never ending says, all I could see for my life  was the at some point soon, not too far away it would end. Perhaps you can understand why I did not want to blog about this. Counselling, lots of counselling had to come first. 

I have always been realistic when it comes to my treatment, but I dropped my guard when I heard the sweet words of the ‘sweet spot’. There is no way of knowing if I would have handled it all better if I had been better prepared. If, during bouts of down time, I had not allowed myself to day dream about usual 32 year old stuff, maybe not the babies for I am a realist, but I would dream about independence, love (I’m talk under-the-covers-kind) and just living. I thought and planned for a life where I was not just going through the motions of my drug regimen. 

I could not then and still can I not see how I can reconcile this with relapsing. All my peers are moving in one direction, their direction whilst I feel like a am treading water until the day I am told that the Medically Trained People can do no more. There are times when I feel I am  the saddest, poorest spinster, adult child that there ever has been. I know that the more drugs I take the harder it will be to keep hold of my former self. There will be more staring into space as I try to follow a conversation and more Friday night’s out longing for my bed by 7.30pm, afraid to tell my friends that I am struggling to hear what they are saying.

All the time I was fighting the peak of battle in my head, I was being poked and prodded and then waiting for the Medical Trained People to give me the low down. To be precise, give Mamma Jones or Housemate the lowdown; I was in no fit state to hear it myself. There was too much waiting. I was in what can only politely be described as a heightened sense of anxiety. Looking back, it is a wonder I held it together as well as I did. Potentially, I thought that each test would show  that I was on a priority boarding ticket to the kicked bucket, but alas, that was not the case. My biopsy result did not have any active cancel cells in it, which even my brain worked out was better news than cancer being present. My scan did show new disease in my pelvis, both hips, both arms, both shoulder blades my ribs and in my cervical spine, but as far as I know, there was nothing requiring urgent attention. I have been told to be very careful, which means no lifting, very limited walking and no picnics. I could add more to the list, but I conscious of my word count. Just imagine an even bigger loss of independence.

I mean no disrespect when I say that the only  good thing to come from all of this is my transfer back to UCLH. The reason for the transfer is related to drug funding. One should never underestimate the benefit of being able to email a Medically Trained Person and have them respond to you and make you feel worthwhile. I feel safe at UCLH. I emailed the team at UCLH to inform them of my relapse and do you know how long it was before they had phoned me to see if I was coping? 15 minutes. That makes all the difference to me (KEEP OUR NHS ❀️!).

We now quickly and smoothly enter the next phase in my treatment. I like to call it the brain altering, stomach churning, sick phase or to put it more simply, The Drug Phrase. I have limited say on my treatment and I am happy with this. I trust my Doctors to prescribe me the right course of treatment. That is not to say that they have not been  without their teething problems. Did I mention a propensity to vomit? 

I am currently on a course of oral chemotherapy supported by a four weekly dose of Zometa for my bones. I am on a daily tablet of Revlimid, a weekly tablet called Ixazomib, which is basically an oral form of the Cilit Bang I was on in 2013-14, all washed down a healthy dose of Dexamethasone or steroids to you and me. I had increased my MST to 120mg twice a day to manage the pain, but became so constipated, I could not eat and the side effects became worse than the pain itself. Got it? With my supporting meds included, I am currently on between 24-40 pills a day. My first cycle was intolerable. I got into bed on a Monday and walked out of it a fortnight later and 8kg lighter. The following cycle was easier to bear, but nothing can remove fatigue as the unpredictable ruler of my life.

For the unitiated reader, the fatigue I have with chemotherapy goes far and beyond me feeling a little tired. At it’s worst, I cannot move, I cannot sleep or I oversleep, I fall asleep with the cooker on, showering takes two hours due to rests breaks and I have no capacity for a challenge. A slight problem to you, is a huge, gigantic issue for me. I once earned a fairly respectable BA and last week, I spent at least 10 hours fretting about how I would zip up a dress in a hotel. As a consequence I increasingly find myself going from docile to dogged in a matter of seconds. My fatigue gives me anywhere from 30 minutes to four hours of ‘good hours a day before I have to crawl back on my bed or the sofa. The beautiful part is that I cannot predict when or where it is going to hit.

I could go on and on about my recent experiences and do not worry, I will. I have now brown the seal. I already have a fairly detailed analysis of my bowel movement coming your way soon. For now however, I will end this blog. 

I will however say this, the day I started my treatment, the first day I took my new regimen I had no doubt in my head that I was going the right thing.  There was no doubt. I felt empowered. If I have taken one thing away this last four years it is that my illness is not just about me. I do not know what the future holds, but I know that I am not yet ready to let things happen without me. There will be days when I will doubt this, the feelings of ‘woe is me’ are inevitable and healthy. For me, right now, I am glad I was just given had the opportunity to regurgitate last night’s dinner. I am glad that I am likely to spend all day in bed feeling like I have been hit over the head with a sack of potatoes. I’m not glad about all of this because nothing remotely fun is going to happen with my day. I am glad because at some point in my near future, I will be able to do something worthwhile and right now, that is the only thing I can ask for.

EJB x

P.S. For all those myeloma sufferers out there; this works for me. This is my story. Please do not feel like I am telling you how to behave and do. You follow your path.

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N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

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Definitely Not Normal

There is nothing more anticlimactic than the word ‘transplant’ prefixed by the words ‘bone marrow’ or ‘stem cell’. Having experienced two SCT’s before, I knew this time round was not going to start with good looking people wearing scrubs shouting “stat”, whilst sporting my blood all over their latex gloves. My loved ones were not going to be waiting patiently for news in a reception area and it would appear the only soundtrack thus far comes from Julie Andrews. My allogenic transplant has looked nothing if not boring. I am convinced that the optional removal of a bunion would have looked more exciting than what we experienced up to and including on Thursday.

I’m poised for drama, but I do not know what that drama is going to look like yet, or when it is really going to begin, so in the meantime, I will share a few photographs of how Medically Trained People have made the extraordinary, appear somewhat ordinary.
Harvest

   

    
 
Day Zero The First

   

   
   

   

Day Zero The Second

Many people, included I, am surprised by fact that the stem cells are not tested where they are harvested at St Bart’s. Instead, on each Day Zero after Big Sister had been drained and her pins were with needles, her stem cells were couriered to The Royal Free Hospital, some five miles away for testing. They would then travel back by courier, before entering me. It seems a strange world we live in that my sister’s bodily fluids could have visited the magical place known as Whitechapel without their maker being present. 

The cells were taken away in branded picnic bags. On the second day, Big Sister and I showed far too much excitement towards the courier returning our precious goods  when unfortunately for him, he came across the two of us in a lift. We squealed (because it meant I would be home by 20:00hrs) and he looked at us like we were at the wrong hospital. I captured the moment. 

  
Waiting

  

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Drooping

I have literally spent months, maybe even a year willing for something to change in my treatment, so that I had something interesting to blog about. I have a lot that keeps me awake at nights, but I still managed to squeeze in the worry that the monotony of daily cancer care would drive people away. Fast forward to my allograft and I have something new to say almost on the hour. Everything seems like it is new and I am in a state of flux. The problem? Nothing is keeping me awake at night. Very little is keeping me awake in the daytime. My treatment and this experience seems to be moving at such a rate that I do no have the time and I definitely do not have the energy to tell you about it all.

The headline is simple, I have had my transplant. Unlike the original plan, I had not one but two Day Zeros because Big Sister did not produce enough stem cells on the first day. I am far too tired to have body issues at present, which is for the best, because more than one Medically Trained Person told me that the reason for the two day transplant was my sister’s significantly smaller body size.

I just asked Mamma Jones to confirm how many cells I should have had over how many cells I actually had, and I felt like her answer lacked conviction. All you need to know is that I was only marginally short on Day Zero The First, and by close of play on Day Zero The Second, I had had more stem cells than originally intended. 

I now very much want to be a watched pot. I am being monitored so intently, that hopefully, my body will never have the chance to boil… I keep imagining that one day I will wake up and have enough energy to reply to my messages and blog about my experience to do date. If that day doesn’t come, let me tell you that this watching schedule is intense, with absolutely no room for respite. 

Going into this transplant, I was told that it was easy when compared to what I have already experienced over the last three years. I think the word ‘easy’, was a white lie. What I am doing, what I am having to do everyday without a day off is exhausting. Two years ago, I was stuck on a ward on UCH with green coming out every orifice; that was hard. Today, I do not have green coming out every orifice, but it is my 10th day of travelling into Bart’s for blood tests, forgoing rest and questioning the real purpose of showering. On Thursday, utterly dejected, I sat at the foot of Big Sister’s Harvest Bed and declared that I had never felt as ill as I did in that moment. 

If I could, I would sleep all day long. I just paused to see if I could have a few waking hours and truly the answer is no, I could sleep all day long. Yesterday, my neutrophils dropped to 0.6, so we are anticipating being told that I have to go into the hospital today. Exhaustion doesn’t cover what I feel. I am drained and I am fairly certain were it not for people putting food and drink in front of me, I would consume neither.

As for St Bart’s itself, I cannot be kind. There has been mistake after mistake, some I think are potentially serious. On average, I have been sitting in the patient bays for 5-8 hours a day and the fact that it is not only me feeling let down by the service is of some comfort. Individually, some of the Medically Trained People are lovely and I’d like to see Jeremy Hunt work the 10 day week plus on call one of my doctors just worked, but collectively, it’s disjointed. 

I keep reminding myself that I am a pragmatist and the only new age things I believe in are my Mindfulness Colouring In Books, for if I believed in more, I know I would get bogged down on how the ward has made me feel and to what detriment that has had to my overall treatment. It’s a blog in it’s own right, but when I questioned whether I would still be standing if St Bart’s had been my hospital from the start of my treatment, I think that really says something about my perception of their care. 

Now, Mamma Jones has to read this to see if it makes any sense and I am going to close my eyes to see if I can shake off this headache I have had for the last 48 hours. I am not allowed paracetamol anymore. Or suppositories, but that is another medical issue entirely. Bloody neutropenia.

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Feel The Burn

On the first day of radiotherapy, way back when on 21 August, I was told that the treatment may cause some ‘skin irritation’. I was also told of this ‘skin irritation’ when I went in the week before my treatment starting for my planning and when I met with the Medically Trained Person who decided to give me the treatment in the first place. I did not heed the warnings. I mean really, what is a bit of dry skin when one faces the daily challenge of bone pain, whilst taking a hefty dose of chemotherapies?

On 21 August I was given a small tube of aqueous cream to apply to my back. At the time, I thought that the request was quite laughable because I could not touch the area of my back where the cream was intended. Reclaiming the ability to touch my lower back without wincing was one of the reasons I was there in the first place. I got the impression that this was lost on the radiographers. Given this slight practical issue, which I was not going to ask somebody else to do for me, and the fact that I did not experience any ‘skin irritation’ when I had radiotherapy in October 2012, I took an educated risk and decided not to apply the cream. As some of you will be aware, I spent much of the radiotherapy era vomiting and feeling less than sexually desirable, so I had little energy to consider whether the skin on my back was turning to leather.

You might have guessed the outcome of this already, but with the beauty of hindsight, I can say that my decision was a mistake.

I made a big mistake. It is an itchy, red, sore and flakey mistake, covering my lumbar region, which decided to reveal itself four weeks after my treatment ended.

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See?

It revealed itself at a time when I could not seek immediate medical assistance, so I wisely decided to self diagnose the affliction on the Internet . After a quick panic stricken detour via images of plasmacytoma, I concluded that I had a radiotherapy burn made worse by somebody who shall remain nameless, accidentally scratching the wound in question. Despite my sound medical knowledge, as soon as was practical, I sought medical advice. That was yesterday.

Yesterday, contrary to my informed self diagnosis, I was asked to seek immediate medical intervention because the symptoms sounded like shingles. To keep you up to speed on what one should avoid post transplant, a diagnosis of shingles or it’s sister chicken pox are right up there in the panic inducing bracket.

I consequentially spent two hours yesterday feeling like a leper. My visit to the hospital had to be prearranged so I could be taken straight to a private room to protect the ‘transplant patients’. I wanted to stamp my feet a little at this statement and tell the Medically Trained Person who arranged my visit that I too was a transplant patient and was all to aware of how risky shingles could be to others as well as myself. I went to the cinema instead.

So I did not alarm anybody, as in other patients and their family members waiting patiently for treatment, I had to whisper twice in reception before I was quarantined into a dark room watching Jeremy Kyle, desperate for a cup of water because I put too much chilli sauce on my steamed bun prior to my arrival at the hospital. For this reason and my potentially contagious state, I desperately tried to avoid kissing a patient’s wife but failed. It was most stressful. Thankfully, after a quick inspection, a Medically Trained Person concluded that I do not have the shingles. I have a radiotherapy burn made worse by somebody who shall remain nameless accidentally scratching it. The area was described as ‘angry’.

It was an experience almost as exciting as the time they thought I had herpes.

An hour later, I left the building with antihistamines (aka the best sleeping pill ever), menthol aqueous cream and emergency antibiotics should my back become infected. I still cannot fully reach the wound without feeling like my back will snap, so I suspect for the next week at least, I’ll be sporting a permanent grease stain and dirtying my bed sheets.

The lesson I take from this latest myeloma treat is that just when I thought I knew everything there was to know and had experienced everything I could experience, something else comes and bites me almost in my arse. And the panic ensued…

EJB x

P.S. I do not understand why the aqueous cream has to be menthol flavoured. It’s zingy.

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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:

β€’ Radiotherapy is not easy
β€’ Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
β€’ Never ever ever wish for a gippy tummy
β€’ 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.

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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.

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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 Β£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.

πŸ™

EJB x

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

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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.

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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.

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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. πŸ’©

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

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Bureaucracy

Have you ever filled looked at a form and thought that you would rather stick a needle in your eye and eat a horse manure pie, than to complete it? Of course you have. Well, that is just the predicament I find myself in at present.

Having cancer, and a cancer that effects ones mobility so much that they once asked a stranger to tie up their shoelace, is not enough to qualify as ‘disabled’, nor does it automatically entitle you to all the money in land. The Government, it would seem, require evidence. Mountains of it. I have spent the last week finding out just how much evidence is required.

To make my life just that little bit easier, I wish to be officially classified as disabled and I would like financial assistance with my rent. I have long been a fan of the welfare state, and although I have some misgivings about taking even more of your money, I feel now is the time to cash in on your enforced generosity. I have a cancer with no cure after all.

The only snag in my planning, is that I am not eligible to your money. Well, my landlord is not anyway. During a productive meeting with the Macmillan benefits advisor last week, I discovered that I cannot receive Housing Benefit, because my half pay still means I have Β£71 per week to live on after rent and council tax. Please note the Β£71 does not include utility bills. So, with my hopes dashed of receiving an extra Β£5 per week, I decided to think of a glass half full and be thankful that I did not have to complete another form, which required copies of my bank statement, two pay checks, tenancy agreement, medical diagnosis, proof of identity, two utility bills and Housemate’s salary details. Tick.

The kind lady, who I eventually won over with my manners and smile forty minutes into our chat, did think I would be eligible for free healthcare services. I know what some of you not based in the land of mince pies, shortbread and Stilton, will be confused by this statement, as you may understand our wonderful NHS to be free. Well, dental care, prescriptions (except when you have cancer) and eye care are not free for all. It’s the recession. So, I was given a twenty page form to complete, which only required a pay check, a year’s bank statement, thorough breakdown of financial assets (this was brief) and a utility bill. Bar a copy of my bank statement, that bad boy was completed yesterday. Tick.

When it comes to being disabled, the bureaucratic definition is somewhat more refined than the general public’s might be, and the definition varies between central and local government. Again, I will reiterate that all of this is to make my life that little bit easier, so it may surprise you to hear that to obtain a blue badge and concessionary travel, I needed to complete and provide the following;

* A 36 page form claiming Personal Independence Payment plus three additional pages explaining my physical limitations, which if approved will mean that in some quarters, including cinemas, museums and theatres, I will be classed as ‘Disabled’
* A six page form to my local council requesting free travel, because getting national agreement does not qualify me as disabled because lyctic lesions in the spine does not an automatic disabled make
* An online form requesting a Blue Badge, I am told that my local council may not allow me this, if I have free travel
* At least one, if not two, independent physical assessments
* At least one medical professional to back up my claims
* Numerous medical documents including a list of medication

Yesterday, I spent much of my day preparing this information. It was mildy satisfying, whilst being completely frustrating at the same time. It is a well known fact that government is a well oiled machine, so it wold be no surprise that I found the forms and information confusing. I received one form in the post that came with a stamped addressed envelope to return it, but I was separately informed that the council will only accept it if I return it in person. I feel like this could be a trick. I applied for the PIP benefit over a month ago and I received the form last week, thank goodness it was not urgent. Fortunately, there is a PIP helpline, which I phoned twice and I when I asked what information would be required, I was told that the help desk person had not seen the form. So, that was useful.

I will tell you something for nothing, I am constantly heading things about ‘Benefit Britain’ and people taking advantage of the system, but in order for somebody to understand these forms, they must be a frickin’ genius and deserve whatever they get. Even the ones who warrant the reminder to complete the forms in ink, with their own information and those of another.

Personally, I do not understand why there are so many hoops to jump. The system seems to be designed so that the applicant is branded a liar and then has to prove their innocence. Living with cancer is just so easy after all. It feels like a competition. My medical ailment is worse than yours… Fact.

Now, after all that form filling and ink, I have to take a trip to a photocopier, and then wait, and do a physical assessment and find out more about a mystery taxi service and try to recover from my transplant. Tick.

EJB x

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