Tag Archives: Radiotherapy

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

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A Lesson in British Decorum

Please not I accidentally published this blog early because I have limited control over my fingers; this is the final version (unless I reread it during a bout of insomnia and decide to correct my typing errors).

University College London Hospital acted with the greatest of haste following my MRI and all round bad results. Not only did they make sure I was referred to Bart’s within days of our meeting, they also referred me to their Radiotherapy Department. I am not sure of the particulars or what happened behind the scenes, but I do know that I saw my Medically Trained People on Thursday 30 March and I was informed on Monday 3 April that I had an appointment at the Radiotherapy clinic on Thursday 6 at midday. Not only did I have an appointment at midday, but I also had an appointment at 14.30 to complete my pre treatment measurements. The treatment itself was to commence on Friday 7 April. 

Now, I know I just threw a lot of dates at you. In a nutshell, in order to be left opened mouthed with administrative awe, you just need to know that within the week of receiving and telling me about my MRI results, the hospital had scheduled in my treatment, which was to start a mere eight days later. Things were moving fast. Need I remind you, that this was all planned in the same week I visited St Bart’s to discuss and consent to the clinical trial. The start date of which, was dependent on my radiotherapy. All of this was also within a week of being told that I had stopped responding fast enough to traditional treatments. What a mouthful.
It was to my benefit that things were moving so fast. Mercifully, it left me with little time to dwell.
Not having the time to stop meant that I was able to get myself into what I call ‘Game Mode’, without stepping into the usual self pitying pitfalls. I walked in to the Place Where A Lot of People Know My Name on Thursday 6 April, ready to go. My head was high and my lipstick was on. I know that things would have happened around me even if I was not ready to go. Mentally however, it was important to me that I felt ready for the various treatments that were soon to be thrown at me, and there was a lot to be thrown at me. After feeling like I had been hit over the head with a Le Creuset griddle pan for a week, and allowing myself to cry for most of that week, the game was on. I was ready go. 

So, after all that internal fighting talk, Thursday arrived and it was time to sit down with an unknown Medically Trained Person. This was not my first time having radiotherapy; it was my third. I had previously had a one off session on my right hip in the October of 2012, and a five day session on my L1-L5 to remove a mass in August 2014. The purpose of my previous treatments, were the same as this current treatment, and that was to manage and reduce my pain. 

Previously, the Radiotherapy Department came along and zapped said pains away; and it is for that reason that I was absolutely desperate to have this treatment.  It shone through. My pain was worsening day by day. Even before I walked through the door into the Medically Trained Person’s office, my desperation was palpable.

During my appointment I was informed that instead of the treating just the two areas that had been ruling my life, they would be treating three. The main area requiring treatment, the area causing the majority of my pain was a ‘mass’ pressing on my C5-T5. That’s my spine by the way for anybody who thought I didn’t have a back bone.  I think ‘mass’ is a nice way of saying something else, but I did not enquire further. To treat said ‘mass’, I would be receiving five zaps over five almost consecutive days. A weekend got in the way of it being truly consecutive. Anyway, so far, so good. I saw the MRI image of the ‘mass’ and I thought to myself ‘yep, that’ll do it’ as I hunched over once again and grimaced in unbearable pain, wondering if I would ever have full sensation in my left hand again.

Also requiring treatment was my left pelvis, which I knew about, but from that appointment forward, I would only be referring to it as my ileum. Simply because ileum is a great word. My ileum would be treated with a one off blast of radiation. The third area to be treated, and also with a one off blast, was my T10-L1. The doctor said that there was ‘something left over from last time’. Again, despite being in my Game Mode, I chose not to ask any further questions about this. I trust the Medically Trained People, and I was happy to leave all the science and decision making to them.  I might not have known about this particular problem, but what harm can a one off blast of radiation do? The 2% chance of a secondary cancer is hardly an issue for me now.

Such was my desire for my pain to be relieved, if they were offering more, who was I to decline it? So, I fast forwarded through the list of side effects and signed yet another yellow consent form. 

Downtown Abbey has a lot to answer for. Stereotypically, British people are believed to be well mannered. We also apologise a lot but that doesn’t fit into the title and narrative of this blog. On a personal note, if I was not well mannered, I would incur the wrath of Mamma Jones. Thus, I made sure that prior to my departure that I thanked the Doctor not only for seeing me, but for seeing me so quickly and in advance of making the pain disappear. It was not a one off thank you, it was an over excited, cannot believe my luck, repetive thank you.  I might have even squeaked. It was the sort of thank you that could easily be described as embarrassing. I embarrassed myself and probably the doctor. I did not care. I do not have the brain power at the moment to adequately express how much I needed and wanted the radiotherapy without simply repeating myself; I really needed this treatment. 

Next up, in this seemingly never ending blog, was the pre-treatment measurements. Now, I am going to assume that the majority of you have not frequented or required radiotherapy at UCLH. It’s a different world to Huntley Street’s cancer centre. It’s in the windowless basement of the main hospital and every member of staff speaks in soft dulcet tones, to match the soft colour tones of the walls. They also introduced themselves to me at such a rate that remembering their faces, let alone their names was next to impossible. 

There is one word I would use to describe the staff I encountered that afternoon and that word is ‘nice’. Everybody was so nice. I said as much to them. They were all the epitome of nice.

To be measured for the radioactive zaps, these particular Medically Trained People needed to access my hips, chest and back. In order to access these places, I needed to remove my clothes and it is this circumstance in which I encountered British manners at their most uncomfortable. The episode went a little something like this:

Technician: [soft dulcet tone] Now Emma, I just need you to remove you top and your jewellery. 

Me: Okay.

Technician: Actually, can you take your bra off as well? We’ll leave you alone for privacy.

Me: No problem, do you need me to take anything else off? I’ve had a lot of medical procedures so it doesn’t bother me.

Technician: Um [looks at my jeans] can you take your trousers off as well? You can keep your underwear on. We’ll give you a gown but you’ll need to keep it undone at the back.

Me: Sure, are you sure you don’t need me to take my knickers off? I truly don’t mind. After you have to have your mother take you to the toilet and bathe you at the age of 28, nothing really phases you. Well, it doesn’t phase me.

Technician: No, knickers are fine. [The three people working on me then left the room to give me the privacy they promised, something that contradicts what follows]

Me: [Now dressed in an undone medical gown, but still wearing my necklaces, which I could not remove myself due to my pain] I’m done.

[The three female technicians then come out of their office, one helps me to take off my necklaces and they ask me to lie down on the measurement contraption]


And so, I did what I was told. I lay on my back with the gown flapping at either side of me. It was not comfortable. The three technicians started to work over me and described everything they were doing to me in their dulcet tones. They kindly explained that they needed to look at my body to complete the measurements. My naked body.

As the radiotherapy was going to be on my neck, lower back and left pelvis, this translated to looking at my chest, hips and the top of my lady garden. Yes, I wrote lady garden. For information, when I relayed this story to my nieces, I referred to that area as ‘my peach’. 

For my chest, I had to remove my arms from the gown which was then pulled down to reveal my less than pert breasts. After some talking and looking, they drew a cross (I found this out afterwards) on the area known as, if I were wearing my bra and standing up, my cleavage. For my lower back, they were able to use the previous tattoos. 

Now, here comes the best bit. To access the necessary area of my lady garden, they very gently and apologetically pulled down my M&S black cotton briefs so they were resting just below my buttocks, and then covered my exposed front with a piece of hospital issue blue tissue. The process continued to be narrated by those dulcet tones. The purpose of the blue tissue was to protect my modesty. 

So there I was, lying on the machine all but naked were it not for the hospital gown acting as a sheet, my pants hanging below my bottom, and a piece of hospital issue blue paper towel covering my genitals when one of the technicians used something wet, I assumed it was an anticeptic wipe, to clean the top of my lady garden. It was at this point that I started to hot flush. The area was inspected closely, and the tattoo I had there in 2012, unlike the ones on my hips had faded, thus requiring another tattoo. 

After I had been through the machine where I had admired some animal stickers stuck to the top of the machine for children’s entertainment, the ladies returned to the room. This time round, I received one and a half new radiotherapy tattoos. I got a brand new one on my cleavage and the half belongs to the touched up one on my not-to-be-seen. Once that was done, I was done. I just needed to get up off the machine, which in my case, is always easier said than done. 

I cannot get up, after lying flat on such a hard flat surface by myself. It has been four years and eight months and I still cannot do it. So, I very politely asked for assistance, which was willingly given. As I sat up, flanked either side by two strangers, the undone gown still acting as a blanket fell off exposing my breasts and my bare bottom. It was too late to protect my bottom, but I was able to cover what I unaffectionally call my Saggy Maggies by putting my arms through the sleeves of the gown. As I put my legs down and stood up, the blue paper towel that had been protecting my lady bits fell to the floor, and my pants defied gravity and stayed up despite being rolled around my upper thighs. Once up, the technicians once again left the room so I could get dressed in private. 

In private? Really?

As I said early on in this tale, I am comfortable with my body enough to expose whatever parts of it the Medically Trained People need to see. I am not embarrassed by it. I understand it is something that needs to be done, and in the grand scheme of things that I have had to do since my diagnosis, getting naked does not register as remotely noteworthy. 

I did, however find my experience on that Tuesday as noteworthy. In their attempts to be polite, to protect my modesty and to make me feel comfortable, the technicians achieved the opposite. Fortunately, I can see the funny side of standing all but naked except for some rolled down knickers and an undone hospital gown. It just seems strange that their approach to nudity, a very British, hush-hush approach to nudity, made me feel more exposed than if I had removed all of my clothes in the first instance. 

It was an approach that ran through the entire department, despite my attempts to be visibly carefree when it came to disrobing. When I attended for my actual treatment, the room was equipped with a modesty screen for changing, which I chose not to use for anything but storing my belongings and hiding my difficulty in doing up my bra due to my failing arm. And yet, I still went through the same convoluted format. I was not asked to remove all my clothes right away, I was asked to remove them one by one. When it came to zapping my ileum, once again, I was asked to keep my knickers on only for them to be rolled down, at which point my nether regions became reacquainted with a piece of the hospital issue blue paper towel. 

I found this episode to be embarrassing too, not because I was naked but because I had a hot flush during the procedure. I hot flush all the time, but hot flushing whilst somebody I do not know is helping me off a flat surface wearing nothing but pants  rolled down to my thighs with a hospital gown round my midriff is an uncomfortable experience. It is exceptionally uncomfortable when several seconds after standing, a damp piece of hospital issue blue paper towel falls to the floor. At least I made my nieces laugh. And my friends.

And with that, this particular lesson ends.

EJB x


P.S. I made Housemate take a picture of my cleavage tattoo. It probably made him feel uncomfortable, but as you know, I’m down with my naked form. Here it is, nearly naked. It’s only fair that I share it.

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The Fear – Part II

You have stopped responding fast enough to traditional Myeloma treatments’.

Fuck. 

Few things warrant the use of such foul language, especially in the written form, but a ‘fuck’ or a ‘bugger’ is definitely suitable in the situation I found myself in last Thursday afternoon. I didn’t say it out loud; I was still able to maintain some level of decorum.

I think I know what that statement means. It’s not the worse news I could have received, but it is not far from it. It wasn’t what I was expecting. It is a polite way of saying that my treatment isn’t working. Not working. Stupidlyhow could I have thought my treatment was working when I was in so much pain? In fact, after my first full cycle on the recently licensed drug I was on, I told a Medically Trained Person that I did not think it was working. I wish, with every weakened bone in my body that I was wrong. I wasn’t. 

 Am I dying? 

I don’t think I thought all of this or processed it when I was in the Medically Trained Person’s office.  I was in shock and I was trying to hold myself together. I didn’t hold myself together. I couldn’t speak, not initially anyway.  The first words I uttered, did not sound like fully formed words. It was an explosion of emotion. I tried to say that I wanted my hip fixed but that became a sob about how overwhelmed I was with the news. That’s right people, in this circumstance, I simply chose to yelp ‘I am so overwhelmed!’. Then I sobbed. It was not a cry, it was a snot-producing, face-pulling sob that was softened when I saw the tears in the eyes of the Medically Trained Person.  

I haven’t had long enough.

Thank goodness for my Big Sister. I had no doubt that she would step up in this kind of  situation and step up she did. I think I had become deaf to what was happening around me. To me, everything that happened in that room was a blur, but she wrapped me up in metaphorical love and got on with what needed to be discussed. It could not have been easy for her. It is one thing to be afraid of something, but facing that fear head on, whilst holding somebody else up, is on another plain entirely. I know that it was not just my fear either. What is happening to me, what was said in that room, is a fear held by everyone I know (and happens to like me). I will readily admit that I lost control. For the rest of that afternoon I repeatedly tried to compose myself, but failed miserably. I didn’t know that tears could flow so uncontrollably. Nor did I know that I was capable of talking such complete and utter drivel. But, for the rest of that afternoon and evening, I had my sister sitting next to me, looking after me and discovering the many benefits of a banana milkshake.

Am I a failure?

Anyway, let’s move on from this emotional mumbo jumbo; we have some real business to get to. In a nutshell, despite three stem cell transplants and many, many rounds of treatment my disease is currently active and my paraprotein is on a rampage. It is so active that I have to have radiotherapy on the distruction it has created in my body. Whilst the drugs I have been taking including the one I changed to in January are doing something, the cruel circumstance is that they have not been doing enough. This leaves the question I asked just a few months ago, what else is there?

Is this the end of the line? It now seems an almost rhetorical question. 

I do not wish to bore you with the history of Myeloma treatments, largely because I’ll reveal how little I have chosen to know about it. I’ve been deceiving, most of you will know far more than I do on the subject. For where we are in my story, all you need to know is that new myeloma drugs tend to be derivatives of older drugs. They are related.  This means, in a shake-your-head, we’re-out-of-ideas sort of way, the Medically Trained People do not think that such medications will work on me for much longer. It’s hard to process that, I almost have to sound it out in slow motion. And then repeat it. And repeat it again.

There are too many things to say about all of this and I don’t have the distance or the benefit of an adequate pain and drug feee sleep to eloquently describe how I feel. I know I am angry. Since I was diagnosed, I did everything I was asked to do. Almost anyway, I haven’t lived in a complete sin free bubble, but I have lived and I have done what I have been told to do. I took my various treatments, I coped with the disappointment after disappointment and still, I get out of bed almost every day and take the pills I have been prescribed. Yet it has still gone wrong. I used to joke that given my age and the flocks of people trying to help me, that I was a medical marvel. I willed myself to be, terrified that I wasn’t. It now transpires that the only thing marvellous about my treatment history is in how powerful my Myeloma has been. Perhaps I should have gone gluten free as one nosy Parker once offered as superior soundbite.

I do not believe in any kind of divinity. I have nobody to prey to and nobody to blame. A stranger once told me that my lack of faith was the reason I had cancer, but let’s face it, there are a lot of knobs in this world.  When I add it all together, I just think something bloody awful has happened to me and no matter how much I have fought it and continue to fight it, it’s stronger than I am. Long gone is my bereavement for my lost children, old age and a picket fence. My fears now seem so much more urgent.

I don’t know why this happened to me, but for the last week, I have felt ashamed. I know that I did not bring this on to myself, even if I do love white bread too much. I do not believe that somebody’s willed for this to happen to me. And yet, I feel like I should have told my body to do more. Fight harder. Forget about being polite and smiling at everyone, I should have been a total bitch, constantly in attack mode like the scary army captain I met once in the cancer centre who made me cry when she announced it was her sheer willpower that caused her continued remission. I have willpower. I have multiple reasons to live, and yet I currently live in a world where I cannot do up my shoes.  

I should have reacted better to my medication and treatment plans. All those odds, all those odds and I was always on the wrong side. I’m angry that all of this is making me think about what this world will look like without me in it. I didn’t realise I have so much to lose. I watched my mum run around after me at the weekend, making me food and making sure my neck was adequately supported by my pillows, I listened as my nieces nervously tried to make me laugh as I tried to rewind my tears, as their Mum tried to keep us strong, and with every vibration, I could feel my friends trying to cheer me up or express their anger. I feel like I have let all of them  down. 

I made so many half promises about my treatment. This one will work. We will go on that trip. I can make it to that pub. Seeing the waves of broken promises scatter around me is my new definition of fear.

But what the hell is all of this? I cannot stop yet. I must not stop yet.

The Medically Trained People aren’t quite ready to stop and nor should I be. Last Thursday, when Big Sister’s concentration powers really kicked in, I was told of a clinical drug trial at St Bart’s involving antibodies. I could give you the medical blurb, but I think I should save that for a rainy day. All you need to know is that it is completely separate to all other treatments I have had. It might work, it might not, but the space on the trial could be mine. It took a few days, but I can now firmly say that I take back everything negative I have said against that hospital. 

A lifeline. 

It may sound foolish, given my very limited options, but the thought of leaving the comfort of UCLH once more added to my devastation. That hospital, in both my successes and failures have held me up. I have no other point to make on this subject, but it’s important. Ever the pragmatist however,  as I said last week, I think I said it anyway, if it is not clear to you yet my memory is a haze; ‘it is what it is’. I have to get on with it. 

On top of all that has come before this,  we had to discuss my need for radiotherapy. The practicalities. You can imagine how long this one clinic appointment felt. So much to take it in, so much to fathom. Ahead of last week, when I was suffering from worry filled sleepless nights, I thought the good and bad news hinged on the what was found in my MRI.  Clearly they did not, and now it seems easy to forget that I need some fairly urgent treatment. I have something in my neck that shouldn’t be there for crying out loud. And yet, the radiotherapy feels like it has become secondary to the ‘big news’ despite how quickly I have once again found myself increasingly immobile. 

I do not know if it is in the form of lesions or tumours or the generic term of bone disease, but I require treatment in my neck and my hip. The area in my neck has caused the majority of my recent problems in my upper back and my arms. Again, this may sound minor, but wondering why and how I have lost the sensation in half my hand for the last month, is a blood-curling. To even consider how the knee bone really is connected to the leg bone is mind blowing. If anybody has seen me move in the last month, you would have witnessed how much this pain has made me squirm. The pain and this is something that has not happened in a long time has been at a cry inducing level. I have cried not because I feel sorry for myself, I mean I have done that too, but because the physical discomfort has been so great.

It’s a juggling act though. As I am now due to start a new treatment at a different hospital, my doctor was reluctant to also zap (a term I have used a lot over the last week when discussing my radiotherapy, mostly because I can use an emoji) my pelvis. It may lower my blood counts and it will make me feel groggy, but even in the whatever state I was in last Thursday, I knew I needed my hip fixing. To get through my next, I have to be as fit as I can be.

I think it goes without saying, but the last week has been a whirlwind. It doesn’t feel like a week. In whatever timeframe I am now working in, and I guess it is a new timeframe now, I feel like my world has been turned upside down. I have so many things coming from so many directions, that I laugh at the meagre everyday complaints I have been able to read on social media. I used to think I was a great multi-tasker, but when it comes to affairs of my life, and the time that is left in that life; I do not have the foggiest.

I have to give myself a few passes. Firstly, I have been put on a ‘pulse’ of steroids, that is controlling my pain and will hopefully hold the myeloma whilst the Medically Trained People are doing their juggling. It is a ten day course of as much steroids as I can take. That’s right, ten days, decreasing by half every other day. It’s a well known fact that I cannot take a lot of steroids, but to put it into perspective, the first day’s dose was more steroids than I usually take during a full cycle on my old treatment and each weekly dose of that put me in bed for two or three days. I am awaiting for the inevitable crash increasing alarm and dread.

Secondly, I am currently on a lot of pain medication including sedatives. I basically rattle. 

Thirdly, I am once again struggling to look after myself more than I usually struggle to look after myself. I cannot bare weight in my left arm, my right arm is starting to go the same way and every activity, whether it is washing, eating or cooking seems impossible. In this mindset and the physical prison, I have to arrange my forthcoming radiotherapy sessions and attend the necessary testing for the clinical trial. And don’t think for one second, I have done any of that without my lipstick on. On Monday, which again is a story for another day, Mamma Jones and I spent 12 hours in London waiting, meeting new people and satisfying my steroid induced hunger. Today, I have seen a doctor, looked at some scan results, been measured and had two radiotherapy tattoos. 

Lastly, I just ask you to add everything up, consider everything I have said in this here blog and attempt to fathom where on earth I can begin. I have to begin somewhere after all. Welcome, to another volume in my possibly soon to be ended story of my life. 

To clear my head, Mamma Jones took me on an epic adventure to a National Trust property last Friday. I thought you might appreciate the evidence that I am still here. Getting out of bed.

So, there it is my current story. It’s not cohesive, it’s all over the place because I am all over the place. It’s new. It’s daunting. And my goodness, it is fucking scary. 

EJB x

P.S. Kudos, and I mean bucket loads of the stuff must go to my Medically Trained People and the NHS in general. In just seven days, they have seen me transferred to St Bart’s for (hopefully) the start of a clinical trial. UCLH somehow got my name into the mix of said clinical trial and St Bart’s seem to be moving whatever needs to be moved to accommodate me (no jinx yet though). They have also liasied with the radiotherapy department, resulting in an appointment today which included all my pre treatment measurements, ensuring that all areas requiring treatment are attended to. The treatment for which is starting tomorrow and will conclude next Thursday.  I have no more words in me to describe my gratitude.

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The Fear – Part I

I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to have  swallowed a goldfish, but even that causes less goosebumps in me than they once did. I’m not an ox, I still would not enjoy it and any trip to an aquarium equites avoidance at the tanks at all costs. Even the recent odd sighting of a mouse in the flat (mice in Spring, seriously?) has caused more of a whelper than the once or thrice shriek of years gone past. I say all of this, because I have quite a strong inkling that I now know what real fear is. It’s not an inkling in fact, I most definitely know what fear is now and it is all linked to My Myeloma. Myeloma, with it’s series of unknowns and what ifs is terrifying. My Myeloma, which seemed to have inherited the most dogmatic of personalities, so far, can do whatever it wants to me. What I want, what I will and what I need, is barely a factor. In my world, it is, what it is.

Where am I then? For the last few months, since the beginning of the year, I have been experiencing increasing pain in my left arm and in the left pelvis. The pelvis issue is a long standing issue, worsened by my holiday in November and maybe some excess (unnecessary) walking in Amsterdam. When one like me has such keep-you-up-at-night and cannot-climb-into-the-shower sort of pains, there is only really one way to find out what is causing these particular pains and that is the MRI Scan. 

Long time readers with long time memories will know that I loathe the MRI scan. My first one on 20 August 2012 was, without a hint of hyberole, the most pain I have ever experienced in my life. I loathe the procedure, but most of all, I cannot abide waiting for the results of an MRI. I’m terrified of the big reveal. And that, my dear friends is where I currently find myself. Waiting for a Big Reveal.

I can imagine what you are thinking. You are probably thinking there will be no such big reveal, and the pains are just minor things and if there is anything lurking on her bones, then they can be simply zapped away. I say that to myself. Sometimes. Inside my head, I am thinking about massive tumours, secondary cancers and death. Housemate is currently particularly fond of telling me that the pain I have is a trapped nerve. The problem my politeness fails to reveal, is that I know my body. I have known every time I have relapsed by the new pains and I know that this is what is happening to me this time. 

The problem with this time is, what do we do three transplants in and various treatments later, if I gave relapsed? Don’t think about it. Don’t think about it. DON’T think about it.

Clearly I am thinking about it? So, planning  ahead, and realising that I occasionally do need somebody to hold my hand, I asked for Mamma Jones or Big Sister to attend the clinic appointment that followed by MRI scan on Saturday 25 March. It’s mostly so they can listen and ask questions, in the event of me becoming a shelf shocked mute. We had five days to wait for this reveal and believe me when I say, it was a substantial wait. As I am a behind in the story, and to create some more suspense, I’m going to make you wait a little longer too…

In the four weeks prior to my scan, the nerve pain in my left arm had become unbearably worse. I couldn’t sleep properly nor hold a proper stance. I had taken to wearing a sling outside, not because I wanted to be on the cutting edge of fashion, but because I thought it would give my back a break from carrying around my 2 stone + of arm. Gone was the medically trained idea that it was caused by neuropathy caused by previous medications and in were words like, ‘previous disease’ and ‘tumour’. My personal favourite was ‘not to alarm you, but if anything changes, go to A&E right away’. 

And with that, I was left in a long, hot pressure cooker.

As you might have surmised, initially, if there was an alarm, the Medically Trained People did not show it. A feat in medical training. I had lost feeling in half of my hand and had constant shooting pains in my arm. But, as the pains showed no signs of abating, I was prescribed medications. Lots and lots of medication. 

I have always considered my pain relief systems rather light, but in the matter of a few weeks, I had gone from having 80mg of MST (slow release morphine) twice a day, six paracetamols and two Lorazepams which doubled up as my anti nausea tablets. To, 100mg of MST twice a day, plus breakthrough pain relief, eight paracetamols, 300g three times a day of Gabapentin, four lorazapam and then in increasing doses finalising at 50mg of Amitriptyline, to allow for something resembling sleep. Even my ever increasing nerves were unable to shit that increased intake of medication out.

So not only was I in constant pain, I was constantly exhausted, making me feel constantly irrational. A sleep however, even if it is drug induced, proved better than no sleep at all. Even if I did feel like I was on the edge of my seat the whole time.

Despite all of this, I still tried to be strong. I mean, I didn’t really sleep much in the week leading up to my appointment and I relied quite heavily on my friends to keep me distracted, but I socialised and I laughed. Thankfully, the weekend of the 25 March was not just the weekend I had an MRI scan, it was the weekend of my most dear friends’ wedding. The distraction was just the tonic, even though I had to leave early on one day because I felt like somebody was playing the banjo on my funny bone. 

This is a picture of me to prove that despite looking dead, I was still doing my damnedest to live, as Miss Havisham. It also shows I exist.

Wondering what was going on was never far away. I’m going to let you into a little secret, in November, as part of my attempts to medically retire, I received a letter saying that I had an outlook of 12-15 months. 12-15 months! Ever the pragmatist, I took this as the worst possible case for my 32 year old lifeline and hid it in a drawer somewhere in my brain. There are no finite treatments remember. 

As much as I like to pretend I’m a fighter too, I’m more inclined to think the worst when expecting test results. Katy Perry wasn’t going to hear me roar. As the days grew closer and the pain increased, I couldn’t help but be reminded of this timeline and these facts. Add to that every possible consent I have ever signed for treatment, noting severe side effects (SECONDARY CANCER) and I had become a shaking, irrational, moody pants. Afraid of upsetting myself with my almost self fulfilling prophecy, but terrified of it being the truth and constantly, on loop watching  my life slowly erase from the lives of the people I love. 

Who knew that lying down on a machine for what was nearly 2.5 hours could cause that sort of fear in me, but it did. I think I hid my hysteria well, but that’s just my personal opinion. These discussions, less than five years into My Myeloma journey seem real now.  I am afraid of dying, but I am so scared of leaving my friends and family. 

I have long discovered that this is not a subject anybody who loves me wants to entertain. It’s definitely not something, in the middle of tests one can really talk about because one is trying to be hopeful. It was all I could think about. I felt so duplicitous and defeatest. Some mornings, when Housemate left for work, I would snuggle up to the Bruce Dog and think ‘are you going to remember me?’. I would then apologise to him that I couldn’t lie on my left hand side because my pelvis just couldn’t take it and worry he was going to hate me because one day, I won’t just leave on a weekend trip to my parents’ house. On the issue of my pelvis, this is indeed a mental fight I have with the dog on a daily basis. He doesn’t understand why I have to lie on my right hand side. He’s a bloody dog.

So, then the day came. My clinic appointment at UCH on Thursday 30th March. I was so nervous, I ploughed down a  packet of Refreshers in my first 15 minutes of waiting. My need for sugar was greatly met by my Big Sister with a nice, unhealthy slam of Tablet. The best food with a medical name on the market. I don’t recall much of the waiting period. I know it was a few hours and I did my customary monthly pregnancy test. I remember Big Sister saying my favourite Medically Trained Person had a good poker face, but that was it. 

What fate was going to greet me when I was eventually got called through? Then it happened, I was called through not by a registrar, but the Head of the Clinic. Bad news. I walked in with my best smile on and my head held high, for that is all I have always done.

The MRI scan did show disease in my neck, which is causing all the pain in my arm and my arm. Blah, blah, blah. My pelvis is also in such a state that it’s impacting on my muscles and it is for that reason, I have required a step stool to get into bed these last few months. Fortunately, these little nuisances can be treated by radiotherapy. Frustrating, sure, but fixable. I exhaled. Briefly.

For what came next, could well have been the worst thing I have heard since the day I found out I had myeloma.

You have stopped responding fast enough to all traditional Myeloma treatments…’

And with that, maybe a minute or so later, I cried.

To be continued….

EJB

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The Tattoo

Have you ever woken up and wondered ‘my, what on earth does a radiotherapy tattoo looks like?’

Of course you have. We all have. For many of the fortunate masses, it is one of the great unanswered questions in life. We rarely share these thoughts with others in case they think we have some sort of fetish for untidy black blobs on human flesh. Not me, I asked to see somebody’s NHS artwork long before I can cancer. We all know, deep, deep down, when you truly think about it, that these blobs offer nothing for one to fetishise over, even if the ones you will see before you today are contained on my naked body. Sorry, I meant canvas. The marking on a person’s body is merely a permanent reminder that they have or have had cancer. Their presence is a practical one.

I have three of these tattoos. You can call them blobs if you like. I have one on each hip and another one in between the other two. It was not until I looked for one this morning that I realised how ugly they are. Thank goodness they are small and thank goodness I am round.

I am aware that your curiosity needs to be satisfied now and your wondering must come to an end…

It’s time for the reveal….

The Radiotherapy Tattoo, in my flesh.

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‘X Marks The Spot’ – this photograph was taken a day after I was inked and clearly, my body did not like this and clearly, I forgot to wash off the marker pen

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‘Blurry Eyed’ – this photograph was taken this morning, over 6 weeks since the previous photograph was taken, you can see my pyjamas in the corner of the photo

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‘To Scale With A Ranitidine’

Have a wonderful day.

EJB x

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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:

• 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.

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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 £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.

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Dog Poo Bags

I was told to expect a gippy tummy with my radiotherapy. I have mentioned this before. I interpreted the side effect to mean runny poo, maybe lots of poop, but regardless, I took gippy tummy to be bowel based activity. I was wrong. The zap lasting but a few minutes has actually resulted in the vomit. By my standards, a lot of vomit. The sound of which, scared the dog yesterday.

Bar my transplant, I have been fortunate enough in my treatment to date, to have mostly avoided the act of physical sick ness. Nausea sure, we’re old pals, but it has been something that has been manageable with a few pills here and there. Post transplant, the nausea was something that occurred more than I would have liked, but again, with the exception of a few instances, one memorable one in Mamma Jones’ car, I have been able to avoid something that I have traditionally associated with excessive drinking. Something that is preventable.

I have had five radiotherapy sessions, with my last session finishing a mere hour ago. So far, I have been sick after three of them. A quick, paranoia fuelled Google search yesterday revealed that this is a common side effect of radiotherapy of the abdomen area. As my L1-L5 are the things being targeted, I calculated that it is quite likely that my abdomen may be experiencing a little bit of the radioactive spray back.

Today, because I found yesterday rather difficult and my response to it somewhat pathetic, I came prepared. I have only eaten a pot of yogurt with linseed and a packet of Quavers. One could say the rather tasty New York Deli sandwich from Benugo was wasted on me yesterday. I only had this morning’s food because steroids require food in my stomach. Furthermore, in addition to some strong anti-sickness pills last night and more this morning, in my handbag, you would currently discover three doggie poo bags*. I figured that due to their normal function, they are designed without holes to avoid embarrassing and unpleasant instances of leakage. The bags are an additional contingency because I do not get a great deal of warning and I am currently on a train travelling slightly up the East Coast Mainline. I may have experienced projectile vomiting in the British Film Institute last week, but I do fear doing it in the first class carriage (purchased with disabled railcard discount) would be rather embarrassing and most unfortunate for those travelling on to Glasgow.

The good news is that the radiotherapy ended today. The bad news is that I was told that the side effects, the other being fatigue, could last for another fortnight. Do you know what I say to that? A means to an end my friend. A means to an end.

EJB x

* To ensure that this blog was factually accurate, I again visited the world’s favourite Internet search engine and I discovered there are multiple names given to the doggie poo bags. It would appear that it would be far too complicated to call them a ‘dog poo bag’. From what I can see, ‘doggie poo bag’, ‘dog poop bag’ and ‘bio bags’ are the most acceptable terms. I suspect that this is because the general public have a weaker stomach than I do, and need ‘poop’ presented in a sanitised way.

That was a pun by the way, because all evidence suggests that I do have an actual weak stomach. My weak stomach cannot be sugar coated.

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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. 💩

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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Thrusting

Could it be, can it be, that the radiotherapy has started to work? No pain for two days. Hip pain that is. I have pain elsewhere. Obviously.

That said, less pain has to be a good thing right?

👯👯👯

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Radiate Me!

Yesterday I had my first and currently, my only planned dose of radiotherapy. As it is my only planned treatment, I went to the department in basement of UCLH with no concerns.

I did get the impression that my loved ones were more concerned about the procedure than I was. I actually had no apprehension about it, one could say I was blasé. I was. Usually, as I understand it, cancer patients requiring radiotherapy, need multiple treatments. My radiotherapy was to relieve the pain in my right hip and fortunately, this meant a single three minute dose of radiation to the bone and thus the possible side effects are minimal. So, I saw yesterday as a sort of experiment, an experience if you will, that was bookended with tea and cake. Sure, I had memorised the possible side effects and took delight in telling the nursing staff this. What was that? What are the side effects? Well, “in the short term some patients may experience some reddening and itchiness to the targeted area and this can be treated with aqueous cream. Some patients will also experience some fatigue as their body battles the radiation. In terms of pain relief, it is not instant and will take two to three weeks to take effect and one in three patients experience increased pain before the lesion improves. In the long term, 2% of patients develop a secondary cancer. I have Multiple Myeloma, it always comes back.” I forgot to mention the permanent mark, but that’s because I was told I would not get a tattoo as it was a single procedure. Remember this for later.

It was a long day. My treatment was preceded by my usual injection and it was touch and go whether I would be able to get the treatment because of my ill health at the weekend. I say at the weekend, I am not doing cartwheels right now if you catch my drift. Anyway, I saw the doctor, had the injection, the end. At 14:00hrs, my friend Katy and I headed down for my appointment.

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Now, the doctor was very nice indeed. The radiotherapy department had already seen imaging of my hip, but he wanted to meet me first so I could explain the pain because the images did not necessarily dictate the need for the treatment. I found his honesty refreshing and he had me when he asked whether my lesions have been explained to me fully. I politely responded with a negative and we moved on. I was going to get the treatment. Given the patients they deal with on a daily basis, I was overwhelmed by the compassion from the entire staff in the department. It actually put me on edge and made me wonder whether my blasé attitude was appropriate.

After some admin, during which I confirmed that there was no chance I could be pregnant, I went along for my CT scan. Katy carried my bags. To confirm, I am now completely above my station.

WARNING – the rest of this blog is going to clearly describe me in various states of undress. Do not continue reading if the thought of this makes you want to vomit in your shoe.

I had to have the CT scan in the same position I would eventually have the procedure. Meaning, I had to lie on an uncomfortable slab, with my head and feet fixed into red foam moulds, so I did not move, whilst people touched and poked me. I had to remove my shoes and trousers, but kept my favourite black crochet jumper, knickers and jewellery on. The nurses were very keen to protect my modesty and even though my knickers were on, they were kind enough to place two blue paper towels over my private parts for extra, um, protection. In reality, I do not think the paper towels did a great deal, because the knickers had to come quite far down to access my hips and pelvis. It’s a good job I do not embarrass easily. My Myeloma has seriously taken away all my shame. I don’t think my knickers have ever been touched quite that much, accept perhaps when they are being washed. It was hard to see, but there were four or five people in the room with me, moving me a centimetre here and there, and apparently, drawing on me as I discovered when I washed myself today. I just lay there with my arms on my chest thinking of England and occasionally thrusting my right hip. Once they were done positioning me, they left me alone in the room, whilst I went into the big donut and got scanned. They then tattooed me.

20121023-214603.jpg My Hip.

After a hop, skip and three hours, I was back in for the actual treatment.

The treatment was much the same as the CT scan, accept the room was bigger and the machine looked just how laser looked in ‘Goldfinger’, just slightly more technically advanced and I imagine more expensive. This time round there were lots of numbers being banded about between the two nurses and more movement. To my left was a television screen with my name and address on it followed by a series of numbers. In short, gobbledegook. The knickers were also pulled right down, so at least the paper towel was actually needed to protect my modesty.

For the most part, I was able to blank out the whirling, rotating machine with the green lights to find the whole thing quite relaxing. They played soothing music and offered to dim the lights. If it was not for the radiation warning sign outside, it could have been a rather nice alternative treatment. There was only one point where I panicked, and that was when the slab had been risen so high and the machine had rotated so much, I thought it had decided to radiate my left hip. It had not.

And then it was done. Just like that.

I went home and got into bed and today I feel fine (ish). I am not green. There are no visible signs that yesterday I was exposed to a healthy dose of radiation. If this goes anyway to relieving some of the pain in my hip, then based on yesterday’s experience, I’ll be asking them to zap away some of the other lesions.

Thanks NHS. UCLH did good yesterday.

Oh, and whilst I am thanking the NHS, I should probably thank them for my first ever tattoo.

DOUBLE WARNING – if you are Haemo Dad, sign off my staff appraisal or I occasionally call you TOP, stop reading now.

So, the tattoo… For some reason, my right hip managed to escape the dreaded dot, as did my left hip. Another part of me did not escape the permanent inking. You’ll know by now that I am open and honest about all aspects of my life and my treatment, and it is with that continued aspiration that I say to you now that my name is Emma Janes Jones and yesterday, the NHS branded my fajita. True story.

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EJB x

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