Tag Archives: pain

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
…………………………………………………………….

This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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

It’s Supposed To Be A Marathon Not A Sprint

The month of August is the one month where I am guarenteed to feel nostalgic about my life pre and post My Myeloma. I might have such thoughts at other times of the year, but these usually occur when I am in some sort of drug and/of fear induced melancholy. August however, is different and this August has been more so.

August marks the anniversary of my diagnosis, my Cancerversary if you will. This year it was my five years Cancerversary. Not only do I get warm and bleak feelings about my once able body in the run up to my diagnosis. I am reminded of the stats. I am reminded of the stats I was told on the 21 August that I was then quickly told to forget about. ‘Survival rate is about 10 years, but this may be different for you because of your age’. I have had other stats thrown at me in the five years since, usually at the start of each treatment and with each treatment, My Body has come up wanting. 

There are several important dates in August; admittance to UCLH on the 14th,preliminary diagnosis on the 17th, formal diagnosis on 21st, kyphoplasty on the 24th and treatment commencing on 28th; each are packed full of memories.  This summer, I have found the memories on these dates amplified. Maybe it is something about five years and the fact that anniversaries are usually celebrated in fives. Maybe it is because I have felt my current treatment fail leading to the constant whirl of long forgotten stats and the big question that is , will I make it to the next big anniversary? Try as I might, I cannot forget about this. I even struggle to schedule a brain appointment for it, so I can lock it away again until the next scheduled appointment; my usual coping mechanism.

Every year since the cement was inserted into my L4, I have had to complete a survey about my health. What is that but a ticking clock counting down to… something? This year, the Medically Trained Person at the end of the phone said to me ‘don’t worry, next year is the last year we have to do this’. I responded, quite seriously with ‘good, that gives me something to aim towards. I hope I get to speak to you next year’. 

Some people may call these thoughts unhelpful and morbid, but I call them realistic. To me, not talking about my death, doesn’t make the chance of it less so. Avoiding such talk just makes me feel more isolated than my body is currently making me. I’m do not feel in anyway ready to kick that bucket, but I am realistic to the fact that in the five years I have had myeloma, I have had three failed transplants, multiple failed treatments and two, yes TWO failed trials. Yesterday, I was informed what my aching back had been telling me for weeks, that the Daratumamab trial had failed. I was taken off it immediately, and today I shall return to my home from home of UCLH, with the hope that they can pull something else out of the hat.

I think the fact that it was August has made me hypersensitive to any changes in my body, because those changes mirrored to some extent what I felt all the way back in the Summer of 2012. August 2017 is not the first time I have been made bedbound with a sore back. The difference now is that I know what is causing my sore back now, but I do not know the extent of the whys it if the damage is permanent. Nor is it the first time I have had high calcium, as I was told I had a fortnight ago. I was admitted to hospital in 2012 with high calcium. I have a constant sense of  déjà vu, mostly concentrated in my belly of worry. The difference? I no longer have the naivety and hope I had at the end of August 2012 that carried me along for years. 

Today, I feel like my chances of survival are dwindling. 
Three weeks ago, I turned on my television to find what the BBC were billing as a second Super Saturday. I had tuned into the athletics and believe it or not, a sporting even where people are at the peak of their physical fitness reminds me that I am not. As strange as it sounds, I feel like my diagnosis and thus My Myeloma by default is intertwined with the recent history of the sport. 

During the first fortnight of August 2012, I, like most of the country was glued to the London 2012 Olympics. I was sick at this point, but I did not know why. I recall Mamma Jones telling me on Day 1 of the Olympics that I looked grey and weak. I didn’t believe her, all I knew then was that I had a never experienced pain in my back before and that my GP could not diagnose it. Whilst I was waiting for an answer, I was prescribed a pain medication that made me slur, which led to me being signed off work. Well, removed against my will  from the office. So, I got to spend a fortnight, unable to move from my sofa (it wasn’t a sofa then but a really uncomfortable futon not suitable for grown ups), watching the fittest of the fittest take each other on in a myriad of activities. My memories of this time are fond ones. The irony that I was so enthralled by a sporting event pitched as the ultimate sporting event, whilst I was physically deteriorating day by day, does not escape me. The sane feelings emerged during the Paralympics, only with these games, I had the added jealousy of hearing how these athletes had managed to overcome adversity to be there. 

By the time the next Olympics and Paralympics rolled round last year, I knew that I was once again hooked. Watching as many events as possible was akin to torture but a torture I had welcomed. The athletes wept and I wept. I wept because I felt their pain. I wept because I knew that I was long past the point of ever being able to run anywhere let alone complete  a marathon. I wept because I knew I could not jump over a hurdle and I wept because I would never being able to learn to ride a bicycle around the corner let alone a Velodrome. When the games ended, I wept because I feared that I would not be alive for the next games in 2020. A feeling based on my then trajectory and not depression.

And so, with this year’s World Athletic Chanpionships being held in London, I was engulfed with myeloma based emotions once again. They have statistics too. For all the trying and all the rules I imposed on myself, this month had me thinking about my stats.

 I cannot help to being a different person now to the person I was when I was diagnosed in 2012. 

As scary as all the stats were back then, like I said earlier, I was naive to what they meant or could mean. I thought and hoped that I was told to pay no attention because I was going to be the medical marvel who could withstand every drug thrown at me and survive. I thought remission was a distinct years plus possibility. I believed I had many days ahead of living in me.  Now, in 2017, I think the stats have been long thrown out of the window and the best I can hope for is to exist day by day and try to fit some living, when my body allows, in there too.

There are moments in time when I feel tremendous guilt in how, after just five years, I could end up here. Should I not be pre-paying for my funeral? Is getting a will a sign of giving up rather than an act of mere financial sense. I know my nearest and dearest loathe me talking about the possibility of my death, and now I fear that  these once in a blue mood chats, honest chats, have tipped my hand. I hope not, and if push came to shove, I believe not, and yet I still have moments when I feel guiltily that I may have jinxed myself. Perhaps this is how a favourite athlete feels when the bomb out in the semi finals… 

I know in regard to my treatment that I  done everything I was supposed to do. More open to discussion is how I have mentally got through the last five years, but with regularly counselling sessions and honesty, I personally believe that I have done everything in my power to not be in the medical position I am in today. I renewed my latest cinema memberships by direct debit, not for the financial benefits but because I wanted to commit to being a member next year. For all years. Last week, I spent far too much money on bedding and other soft furnishings, and I spent that amount of money because I want to believe that I will need said bedding for a long time to come. A fortnight before that, I invested in a limited edition backpack, not just because I liked it, but because I needed something of good quality for all my future visits to the hospital. I have more examples, but essentially, I do things to show I am not ready to die. 

My treatment has failed. Again. As of March, I had exhausted traditional myeloma treatments. That’s a lot to take in and let’s face it, these are odds never in my favour. That was a failed attempt to  shoehorn a film quote into my blog, the odds are not in my favour. 

I was supposed to have at least ten years; the marathon. Five years might not exactly be the 100 metre sprint, but it’s no marathon. I want the marathon.

Let’s see what is offered to me today. Who knows, I might be reinstated.

EJB x

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

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

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

It’s Only Da ‘Roids

steroidnoun BIOCHEMISTRY 

Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?

The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking for nearly five years and for that whole period of time has be routinely kicking me in the guts. My quick Google search makes it sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wart I have been. 

Of Dexamethasone, the Internet describes it as a medicine this time and as ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, all I would say, is that for the moral of our current story, remember it’s use as an ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, well, that reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects, for it is those where I feel I know the drug as well as I need to. 

According to Wikipedia the side effects of taking this dreamboat can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. These are the common side effects.  If you are bored, research further but I think I have copied enough to get my point across. They do a lot and they are unpleasant. 

Steroids are hard on the body. They have always been hard on my body. In fact, such has been my response to steroids that for the last two treatments I have had, I have been allowed to take a lower than the recommended dose so that I could have something that resembles a normal human’s week at the end of it. I would rather take any other of my routine medications, even the one that gave me nightmares. 

Wikipedia’s list failed to list my biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was inevitable. I used to prefer taking my month’s steroids over four back to back days as opposed to weekly, just so I did not have to deal with them as much. I didn’t always succeed, but that was my goal. Get them out of the way as soon as humanly possible, whilst still adhering to the will of the Medically Trained People.

Why on earth are you telling us all of this, Emma? 

Patience. Something I lack in abundance, but bear with me. There is relevant, I assure you. 

Scooped up all the shock that happened 10 days ago now, I was prescribed what is medically known as a ‘pulse of steroids’; with the particular steroid being, yes you guessed it, Dexamethasone. At the time, I thought I had been on a similar pulse of steroids before,  but I soon discovered that the only thing I had to compare this pulse to from previous treatments was like walking up Parliament Hill and comparing it to Mount Snowdon.

The course started with taking 20 tablets (40mgs of Dex) for four days, reducing to 10 tablets (20mgs of Dex) on days 5 and 6. By Day 7 and 8 I was down to just five tablets ( 10mgs Dex) and for the final two days, I was prescribed a piddly two tablets per day. Just in case you were wondering, this was to be taken on top of my usual-keep-things-at-bay and not-so-usual-pile-of-pain-medication. So, I have been taking a lot of medication. The prescription for the first four days was for more steroids than I had taken in the last four complete monthly cycles of treatment. It was a LOT of steroids.

When I first heard of this mammoth dose, I thought that it was the sour cherry on top of a pretty ropey, dry cake. It didn’t take long, even in the mental state I was in that day, to be apprehensive about this course of treatment. Eyes were rolled.

How big is the inevitable crash going to be? When am I going to crash? How am I going to go to the toilet over the next week? Am I even going to be able to go to the toilet? What’s my mouth going to taste like? Will I be able to drink water? 

Sometimes, I should spend less time worry about the answers to unknown questions and just let Myeloma take me for a ride. I mean, that sounds all very nice and tranquil and a creator of less worry knots. To be clear however, I would never complain about worry knots. If worry knots exist and you were to mention your own worry knots to me, especially after 10 days on steroids, there might be problems. Or at least some solitarily mocking.

I am digressing. I am constantly digressing and that’s because I am here to tell you what it actually feels like to take 238mg of Dexamethasone.  It makes your brain feel like fuzz. My mental recall, unless it is about episodes of the West Wing, is… well… what was I saying? At this rate, I am going to wish I had different friends. They are too learned for me right now.

Digressing again… I was right to be apprehensive about it. Prior to starting, I had already discovered that the Dex offered some pain relief in the 24 hours after taking it, but this was the only benefit I saw and I did not know for certain that it was the Dex that had made it easier to get around on that particular day. My immediate thought was that I was not going to be able to move for at least 10 days. At a push, I thought I would get through the first few days and then I would be a bedbound mess for weeks after, unable to get out of bed for a drink. Thankfully, so far at least, that has not happened.

Instead, the steroids ploughed me into a period of emotional instability supported by mass uncontrollable, US reality TV level of food cravings. It’s probably best to break it down. Wikipedia needs to update it’s ‘common side effects’ information because nowhere on that list did I see fatigue, constipation, tin mouth, facial hair growing  at the speed of light and tears, lots and lots of tears.

My first few days can be easily categorised as ‘the crying days’. Without the Dex, I dare say that I had some very valid excuses to cry, but on the Dex it was uncontrollable. My usual stoicism forbids this sort of behaviour and I have managed to install a usual system where my crying is done in the privacy of my fortnightly counsellor’s sessions or alone at the darkness of night.

I returned to the safety of Mamma Jones’s nest after the latest of my Bad News Day, and it was there, where I am surround by my immediate family, where I found a lot of things to get emotional about. I could feel that a full outburst was never far away and it wasn’t far away. Somedays, I cried just because the pain was overwhelming me. Other days, and these are the ones that surprised me, I cried in gratitude and in sadness and all of it was completely out of my hands. 
Something as simple as Mamma Jones bringing me my dinner. She cooked it, carried it upstairs to my room and served it to me every day. Almost every delivery resulted in tears, whether she saw them or not. The steroids made my insides come out. 

The worst part of my behaviour was around my nieces. Aged 5 and 10 years old, I do not know if they have an idea why they  Auntie Emma constantly breaking into silent tears mid conversation over the course of a weekend. It’s not something I chose to do, it was completely out of my hands and that is a testament to the power of steroids.

For the first few days, as I acclimatised and things sunk in, I just had to look at them and I immediately began to miss them. My brain would fast forward to that point in time where I once again won’t be there and I’d worry they wouldn’t remember me. Thoughts like that could come in an instance. Would I always be their favourite auntie (if I am indeed their favourite auntie) if they cannot remember me at all?  I asked the eldest if she would miss me, I know I shouldn’t have done, but my steroids took away the filter. Her answer was a ‘maybe’. So, bathed in love and not feeling remotely vulnerable, I cried again. The eldest was supposed to spend two days with me in London, and even the guilt at having to let her down had me blubbing. 

At my most confusing, at least what I imagine was the most confusing for them anyway, was a very innocent conversation about breasts or in our case ‘boobies’, that may well be ranked in my non-existent list of worst conversations ever. At the age of 10, my eldest niece is going through the changes girls go through. Her little sister enjoys this and proceeding to tell us that ‘Lara has little boobs, Auntie Emma has BIG boobs and I have no boobies’. That was it. That’s all she said. Even recounting said story makes my ears water. I immediately started to cry, not loadly, it was more of a silent, please do not see this, sort of cry. It was so innocent, but it highlighted how much there is for me to lose and I have absolutely no control over it. I think they rallied together, but I am pretty sure they had a few days of thinking that Auntie Emma was a total wing bat.

I expected the mood altering side of steroids to manifest itself into rage. Sorry, I meant RAGE! It did not. Even when two women complained bitchily to me that I had put my luggage in the wrong place on a train carriage resulting in them dismantling my disabled friendly bag set up lovingly done by Big Sister, so they did not need to lift up their own suitcases,  even then, the rage was nowhere to be seen. Instead, I apologised, returned to me seat and cried. I should have told them why I couldn’t move my luggage, or why they had just seen my sister escort me onto the train, or why one of the bags was full of prescription medication and another contained two empty specimen bottles awaiting 24hrs worth of my urine, or why I was free to travel in the middle of a week day. I should have done all or any of these things, but I didn’t. The steroids just made me cry and I am wholeheartedly ashamed of myself. 

Maybe that will come, but if it is anywhere near as strong as the tears, stay away from me. Actually, don’t stay away from me, the steroids make me paranoid and I do not want to feel like that either. Anyway, I cannot do up my bra at the moment, so I doubt I’ll be getting into any physical fights any time some.

I suppose the tears the could be neatly boxed under Wikipedia’s ‘depression’ section. I do not think I have been able to portray the weight of the feelings I felt. Just do me a favour and trust me when I say it was ‘bad’. Thankfully, as my dose has lowered, there have been less tears. I have been feeling far more aligned with my usual self and that involves burying my true feelings until I am alone or with my counselling. A healthy approach if ever there was one. 

All other side effects, possibly with the acceception constantly thinking I have glandular fever and excess facial hair, are concentrated around bodily holes. That is how powerful steroids are. 

If there is one thing that a pulse of steroids did to me that I was expecting, was to increase my appetite. A bodily hole. I dare not total up how much I have eaten in the last ten days nor how many calories have been consumed on pretty much zero physical activity. It’s a lot. Like, a bloody lot.  As I soon discovered, the Dex did not have me searching for all foods, just the bad ones. I know asparagus is good for you and I like asparagus, but a tin of mushy peas made a far better plate fellow with a pie.  Like I really had to explain that? 

Dexamethasone when taken in isolation and mixed with my body loves nothing more than carbohydrates. If said carbohydrates happen to be served fried, with butter or with a sprinkling of cheese,served with a massive piece of chicken, comes in a packet disguised as a crisp,  or as a cake then that was Nirvana. Fulfilling each craving felt medicinal.

Thinking about food beats thinking about death, but I have never known my desire to eat to be so all consuming. I’ll be honest, and this does make me weak, no ifs or buts, I gave in to every single craving. I’m sure a nutritionist might have a view on this, or just an opinionated person who eats a lot of greens, but I do not want to hear it. I know that it was bad having a bowl of frozen mash potato as a snack one hour before dinner, but I needed the instance gratification despite the fact I had only just finished half a tub of hummus and had porridge for breakfast. The four slices of Soreen that followed that dinner were also completely necessary and, unavoidable. It was treatment.

I know that I have had steroid cravings before, but this last week has been a whole new realm. I arranged a supermarket delivery on Saturday and on top of including foods that would keep me semi-independent, I ordered Skips, Wootsits, Squares (salt and vinegar), toffee popcorn, mini popodoms, boxes of cereal and a packet of bagels.
 The shame!

On Friday, I sent my friend on a quest to my favourite bakery in London to buy slices of my two favourite cakes in our fair land. It was all to satisfy a craving that started 24 hours before. On Thursday, I found myself on Tottenham Court Road with 90 minutes to kill between appointments. In theory, the cakes could have been mine then, but in practice, they could not be. Do you know why? Because I could not walk the 0.8 miles round trip to get them. I had to settle for a Krispy Kreme instead and I do not really like a Krispy Kreme. Oh, just to maintain some level of continuity with this blog, do you know what happened when I realised I was unable of walking to Konditor and Cook for my slices of Lemon Chiffon cake and a Curly Whirly? I cried.

As with anything that goes in, it must come out. Wikipedia definitely neglected to tell us about this. The only thing I will say on this matter, is sodium docusate. Sodium docusate and lots of it. My long experience in large doses of steroids does not support any argument towards diarrhoea. Steroids mixed with the pain medication I am on, causes the opposite issue. I prepared for this eventuality and so far, so every four days. Yesterday, my experience can only be classed as sublime.

Being on so many steroids also had me searching my brain for the techniques of years gone by. Again, this relates to holes. Linseed is a lifesaver, just don’t accidentally let a puppy eat it. 

Finally, no story of mountains of steroids would be complete if I did not mention the effect it has on my mouth. I used to call it Tin Mouth. I still call it Tin Mouth. I think I have listed enough life altering side effects already, but do not underestimate the impact of having everything in your mouth, including your salvia tastes like mental. Thank goodness nobody but my dentist gets near my mouth. Every flavour is distorted. No amount of ice lollies will get rid of it. My tastebuds are tainted. The weather this weekend was lovely, but I could not quench my thirst with an ice cold glass of water because such a thing would taste of week old unbrushed teeth mixed with pond. Thankfully, though probably not for my kidneys, steroids make me less thirsty than usual, but unfortunately one still needs fluids to function. People like me need fluids to take their 20-40 pills per day. The trusty brew is strictly off the menu. The only thing that tastes remotely like something I would want in my mouth is lemon squash. That was another thing I had to think about and prepare for. Squash had to be purchased.

👅🐽😭👅🐽😭👅🐽😭

I think you get it now. A course of steroids is no walk in the park. I mean, I cannot walk around a park at the moment, but it’s hard. The Dex, even though it is there to help, above all the other medications I take it seems, mostly to hinder. Nothing seems safe from it.  I would even go as far as saying I hate them.  I hate that I have to make sure I take it by 11am, even if I am too tired to make sure my stomach is full, so I can get a good night’s sleep. I hate that even though I have taken it early everyday, there have still been nights where the power of the Dex have overpowered the strength of my sedatives.

Most of all, I hate the unknown. I finish said course of steroids today and I have no idea if I am about to have one of those, all too familiar steroid crashes.  I have been preparing myself for this for 10 days, and it looks like it may not come.  Do I let my guard down?  It’s not worth the punt.

I will never live a life completely free of steroids. I may get to be free of them for the next week, but they’ll be back. They’ll always come back.  Dexamethosone goes with Myeloma like salt in porridge. They should always be served together. It’s an acquired taste. 

In conclusion, despite everything I have written, I am a liar. Despite previously willing this pulse to end as quickly as possible and for the steroids to depart my body,  I do not want to stop taking them in the short term. In fact, first thing this morning I called the  Medically Trained People ready to beg  them to allow me to  take more.  

I do not want to prolong the mouth, waist and emotional altering torment just to give me something to talk about. I just want my pain to improve. And at the beginning of last week, for 12 hour periods at a time, my pain improved. The Dex really did act as an ‘anti-inflammatory agent’. Last week, when I was taking 20 or 40mg a day of steroids, I may have been eating non-stop and crying at the sight of the dog, but I could walk normally. I did not walk like Quasimodo. The ‘pulse’ of steroids, designed to control my pain, actually did control my pain. I’ve weighed it up in my head. I will get more from the steroids right now, crash or no crash, than I would by not taking them. The radiotherapy is going to work, it’s just not going to work right away and I need some independence. I need to be able to clean the mushy peas I dropped on the kitchen floor on Saturday.

I never thought I would say it, but I don’t think I can do it without them. 

EJBx

P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile.  It’s a thought I hold close. Through tears, shout, late night shopping and whatever else it throws at me; steroids are not my controller. 

Myeloma is.

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

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.

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

How You Doin’?

How are you? How you doing? Are you okay? How are things? What’s going on? What’s up? How you diddling? Are you alive? Whaa gwaan?

The above are all questions I have had the good fortune to receive over the last few weeks, even the last one is real. As well as being a fine example of British manners, even the one that is an assault on the English language; I have considered each question to be a subtle reminder that I am failing miserably to keep my  blog up to date. Read between my non-existant lines and you’ll may discern a lack of energy despite the will, but that will only get you so far in coming to grips with the gravity of the question; how are you? 

In my silence, I have discovered that not only are there are a number of ways in which people can ask how I am coping in my post Transplant Number 2 world, but there are a number of ways in which I bombard myself with the same questions. I badger myself. I frequently find myself pondering  how I am, wondering if I am progressing and asking if this feeling will ever end? I am yet to receive, no matter the turn of phrase, a satisfying answer to any of my questions. One sided conversations are almost always, frustratingly unsatisfying.

There are many, many variations of answers to these questions about my mind, body and soul. As if it needed to be said, My Myeloma is anything but clear cut. My answers will change depending on the day it is asked and sometimes, there will be multiple, almost contradictory answers within a single day.  I can be something quite different at 16:00hrs to something I was at 15:55hrs. With regards to this blog, I have decided to provide all the answers in the form of a waffle. Mind, body and faeces. 

To get a grasp on how long it has been since my sister’s stem cells entered my body, to assess the progression, I  referred to something called a ‘calendar’ and discovered that it is 55 whole days since my transplant was completed. It does not feel like 55 days. 55 days of sleep, the hospital, waiting, vomit and poo. It doesn’t not feel like 55 days either; I just feel like I am existing in a volatile limbo where having a concept of time is an unnessary evil. This recovery nonsense is nothing but incredibly slow, and I see it as fortunate that I cannot remember one day from the next and last.

I am still nowhere near answering the questions laid at my door. Other than the ‘I don’t know‘ option, the short answer to these questions and the official party line is that I am  “doing as well as can be expected at this time; and there is nothing to worry about.” Shortly after my discharge from hospital, my transplant was described as “uneventful”.

👏👏👏

Well, that’s great then. I can wipe my brow, exhale with relief, keep my mouth shut and just continue to watch as my body learns to accommodate it’s new DNA…

Only joking, I may now partially be made of my sister, but this blog would not be mine if I just stuck to the short answer. Grab a cup of tea and put your feet up.

The long answer, the answer I prefer to give when circumstances allow, does begin with an “I don’t really know”, then it is immediately followed by one, big, fat “but…”

Apart from the words in my short answer, medically, I do not know how I am. I do not know how the transplant is progressing and I have absolutely no idea when I will know if the treatment has been successful. I knew the transplant would be followed by months of uncertainty, and I prepared myself for that, I just did not know it would be so difficult being completely blind in the matter. It takes an awful amount of mental discipline to stop myself from cracking under the pressure of the unknown, and the silence. 

Medically, I have been told not to worry about my case. My case. I have been told that it is discussed by the Medically Trained People weekly and I know that I should be assured by that. I know that I have no other option but to put my faith completely in the process and the people coming up with my care plan. I do not know how my blood results have changed since my discharge and thus my answers to these all important questions, cannot be based on any scientific or research led evidence, which is an adjustment for me. How I feel, and how I am, is completely separate to my results. 

The official answer, although it is an important and positive one, fails to adequately describe how I feel on a day to day, and week by week basis. In the absence of any clear medical conclusion, I can merely describe what I feel is happening to me and hypothesise what it can all mean. 

I am tired. I know I am always tired, but this post transplant fatigue is different to my previous dalliances  with fatigue. It’s almost always present and there is no visible pattern to when I am going to have more or less energy. I generally, just go to bed one day hoping that the next day will be better. Sometimes it is better, and sometimes it isn’t. Today for example, I have been able to write this blog, do some chores and potter round Marks and Spencer. On Monday on the other hand, I could barely get out of bed, I most certainly could not leave the house. 

Fortunately, I am experiencing less days like Monday and more days like today than I was seven weeks ago. How do I know? People tell me so, because I sure as hell do not have the memory recall, nor the distance to see that sort of progress myself. Okay, I can see it a little bit. I’m not limited to just five minutes of activity a day anymore. I do not know what my limit is, but there definitely is one.

I have surpassed some of my Getting Better Milestones. The first meal I made myself from nothing but ingredients occurred some three weeks ago, and I am now able to prepare at least one such meal a week. I have taken myself to the cinema and I have been on a train. The last train I got did not result in me immediately having to go to bed upon reaching my desination. These things may sound small, but to me, they are fine examples of me clawing back some freedom. I am yet to ride a bus, I do not feel fully confident in sleeping alone and I panic at the thought of a crowd, but I know that these milestones too, will be past eventually.

Before my treatment started, I was told that the recovery differed from that of an autograft. I was told that my recovery would not be one of slow and steady improvement, but one of unpredictable peaks and troughs. It is a warning that haunts me. My day-to-day ability to function my vary, but I dare say that if you saw me weekly since my transplant, you would say that I have shown gradual improvement week on week. I have gone from being able to do nothing but wash myself seven days a week, to be able to hold conversations longer than an hour at least four days a week. My fear, and thus my reluctance to comment on my health and my progress, stems from me  waiting for the fall/s. The fall that everybody warned me of, but nobody can or is willing to predict.

The fatigue may be my biggest drain and the headlining side effect, but there are more and they seem to all feed into each other. Are they a result of the transplant, a side effect of the 40+ tablets I take daily, a symptom of the all important Graft vs. Host Disease or is it simply the toll of three years of constant treatment? I am left to do nothing but guess.

I have gone from having to take six laxatives a day pre transplant, to no laxatives and a requirement for a mammoth supply of wet wipes. I do not know what is happening inside my body for this change to have occurred. I take a number of pills a day that constipate, so I dread to think what would be happening if my mobility was not so dependent on MST. Believe it or not, after 55 days, I still have not got my head around such a visible change.

My nausea is just as unpredictable as my fatigue. I take the prescribed medication and yet there are still days when I see the wrong side of my breakfast and even more days when I feel like there is a chance of me regurgitating more than just my words. Annoyingly, despite all the stools and despite the occasional vomit, my weight remains static. Joy.

I have self diagnosed neuropathy. Unlike the Velcade days of yore, when I suffered from dead arm and pins and needles, I now get all of that, plus severe pain in my fingers and toes whenever I experience a rapid change in temperature. It is a pain that takes the pleasure away from getting into a hot bath. The Medically Trained People tell me this is not an expected side effect from the transplant, and yet it started after the transplant and I  endure it everyday. Have I become a hypochondriac to boot? Probably.

Mentally, I am coping. You can say that I am also coping physically, but I feel like I have no control over the latter whereas I am in charge of how I deal with these obstacles and holt myself together. My brain and my feelings belong to me, everything else belongs to another power.

So that’s the long answer sorted. I can actually exhale now… No, hang on, I think I have something profound to say.

💉💉💉

In My Myeloma experience, I have never felt so detached from my treatment as I do at present. It unnerves me. It is not a feeling I planned for, nor want. I do not know what the caused it, but when it comes to all things allogenic transplant, I feel like I am nothing but a vessel. No, it’s worse than that, I feel like a specimen that is constantly being poked, prodded and analysed; a specimen who is seen but not heard; a specimen who is no longer a human being but is a sequence of numbers and test results. 

That is not something I have said lightly; it is not something I want to think, let alone feel. I’m impatient. I’m impatient for something and I don’t know what.

💉💉💉

So, after all that, be honest. You preferred the short answer didn’t you?

EJB x

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

Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out. 

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

The Cancer Dentist

These days I rarely learn anything new about myeloma. For preservation purposes, I tend to avoid reading about occasional medication advancements. I prefer ignorance on that subject for it does not assist my day to day. Such ignorance means that there really are few days in which I can learn or experience anything new about the wonder that is myeloma. My current treatment can quite easily be described as monotonous, and thus most days, I feel I have encountered everything this stage of My Myeloma can throw at me. Even the unpredictable delays and detours no longer surprise me. It’s an old hat. A black, old, slightly smelly, definitely frayed, hat.

On Monday of this week, as you may have guessed, I did experience something new. Be warned, this does not mean it was interesting (it was not), so feel free to skip to the end. Interesting or not, new is new, and I have been talking about it ever since. It beats me describing how I felt when I had a cannula put in on the same day, which is exactly how I felt 18 months ago and how I have felt almost every time I have had one since. There are only so many times you can spin the same tale, or else one risks becoming as monotonous as the treatment.

In case you wanted to know, the cannula on Monday stung for a few seconds as the nurse inserted the tube into my right hand. I like to use the right hand for cannulas because the left veins are sucked dry more often for blood. The sting was followed by the word I utter without fail, after a successful insertion: ‘blood’. It is a word that denotes relief that further prodding is not necessary. As soon as the tube was removed the bruise appeared and it remains still, or as I view it; the unmistakable mark of illness…. That is the end of that tale of my normality. I do love digression. I do love repetition.

Monday’s appointment came about because I have been experiencing an occasional pain in my jaw, and it was decided that the first step of investigation into the cause would be a trip to a dentist. The dentist in question, would be what I have been calling, the Cancer Dentist. No normal dentist for me. Exercising caution is key.

Did you know that having cancer treatment can make a trip to the dentist a dangerous thing to do? The reasons were explained to me, but my appointment was four days ago and many of them, especially the reasons with scientific jargon, have since left my brain. In a unspecified nutshell, there is an extra risk of infection for us types due to there always being an extra risk of infection. That is pretty standard, but for those with myeloma, the administration of bone juice adds a further complication. Although bone juice helps me elsewhere, there is a chance that if I were to have a tooth removed, it would cause more damage to my jaw and prevent recovery. I recall something being said about ‘flaking bone’. Nobody wants unwanted bone in their mouth.

Drugs do so much more to the body than you think they do. Apparently, I will have to give any dentist a full list of my medication should I decide not to be lazy and I must make sure that O give specific mention to the bone juice. I was told that I would have to mention the Zometa up to ten years after I last received it. That my friends, is an optimistic thought.

The moral of the story, if you have skipped straight to the bottom, is that when you are with cancer, take extra super duper care of your teeth. In the paraphrased words of the the Cancer Dentist, fixing problems in the mouth with everything else going on is difficult, almost dangerous. Prevention is key. Heeding her advice, and I have only been too tired to brush my teeth two times since the appointment. That, is called progress.

I told you this was an exciting blog.

I should probably mention what was wrong with my mouth huh? After finally admitting a problem when I could not wrap my jaws around a bratwurst, two appointments and an x-ray of the jaw via A&E, I got the the diagnosis. Do you know what was wrong with my jaw? Absolutely nothing. By ‘absolutely nothing’, what I mean is, nothing cancer related. I did not think that was even a possibility in this day in age. In fact, my jaw ache is something many normal people suffer from; the teeth grind. How tame. I almost feel like a wuss for one day, it even prevented me from eating a cherry tomato.

Okay, there was something else said at the appointment, something far more serious, but I fear you will judge me… I have a build up of plaque around my molars. It’s not like anybody can seem them. Worse than that, at the ripe old age of 30, I was given a lesson in how to brush my teeth.

So there you have it. It may have been new, but my oh my, was it boring.

I should add, to make this blog even longer, that even though I do not know how to brush my teeth, I have never had a filling… I do still have myeloma though.

EJB x

Tagged , , , , , , , , , ,

The Gippy Tummy

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

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

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

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

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

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

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

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

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

IMG_0049.PNG

IMG_0050.PNG

I found the whole thing incredibly exhausting.

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

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

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

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

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

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

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

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

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

🙏

EJB x

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

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

Decorum

There were two events yesterday, two and a half really, which proved to me, if I needed anymore proof, that I now have absolutely no decorum whatsoever. The subject in question, was of course, my faeces or my lack there of.

Everybody requires a little bit of context and this is mine. I am currently on six tablets of docusate sodium a day plus two senna pills before I go to bed, and still, despite this hefty dose of laxatives, going to the toilet continues to be the bane of my daily existence. In case you were wondering, myeloma is the bane of my world. At least once daily, I also have a portion of linseed, which I believe gives the medicine a healthy, natural helping hand. Linseed also means I occasionally have to visit a Holland and Barrett, thus allowing me to feel superior to the unhealthy masses, that is, until I look in a mirror.

I have long been of the opinion and voiced it several times, that constipation is one of the biggest, unspoken downsides of my medical predicament. I had an appointment with a Senior Medically Trained Person recently, who I had not met before, but Mamma Jones once saw on the television and I instantly took a liking to him when he asked me about the difficulty of my bowel movements.

In that appointment, he told me that one side effect of the radiotherapy would be a slightly jippy tummy. It was a statement that solidified my positive opinion of him. I have now had three sessions of radiotherapy and that particular side effect is yet to appear. I am forgiving him of that, if in a few weeks time, I am able to sit on the toilet without a fear of snapping my spine in three when the struggle ups it’s game.

That is the unsavoury background to my daily (if I am clutching the glass half full), trials and tribulations. I will indeed talk about them to anybody who is willing to listen. The only difference is, depending on the company, I might deepen the code of the subject in which I speak.

Yesterday then, I had a particularly traumatic morning. I had to be up and dressed by 10am, ahead of the Patient Transport Service collecting me for my two hospital appointments of the day, the first of which, was at midday. The PTS can pick me up anytime between 10:00hrs and my appointment time two hours later. As such, stage fright usually kicks in and I cannot pass what needs to be passed because I need a clear 30 minutes to do it. Unfortunately for me, the biological need kicked in around 11:15hrs, shortly after I discovered my transport was not in fact, picking me up at the agreed time. In a panic, I booked a taxi and then visited the room between my kitchen and my bedroom. It was an act that was indeed a mistake for there was not enough time for me to do what needed to be done.

This brings me to my first example. Mid act, I had to give in. As I uncomfortably made my way through my flat to the waiting taxi outside, I said something to Housemate that does not need to be repeated here, such was the level of my crudeness. All that needs to be said is that it Is a term usually reserved for the delivery room in a hospital.

It was a very uncomfortable taxi ride, during which, it became apparent to me that I was going to have to be late for my counselling appointment at midday. Not wanting to be rude, I thought it necessary upon my arrival at the Cancer Centre to inform the relevant people that I may be a little late to my appointment.

Most people would probably have asked the the lady on reception to inform my counsellor that I would be late and send my apologies. Not me. In my second example, the conversation went something like this:

“Hi, I have an appointment with Sxxxx at midday, but I am going to be late…. I have a problem. Not a bad problem you understand, but the one people get with their medication that they don’t really talk about… You know… Um, I just really have to go to the toilet and I’m really uncomfortable and it might take a while. Can you let her know? I’ll go down to her office when I am done.”

It was a conversation that was greeted by a knowing smile, and off I went. Fifteen minutes later, with a large smile on my face, I returned to the reception desk to see smiles all round. I then proceeded to discuss matters in more depth for five minutes more.

Later in the day, I received a text message from a dear friend of mine, who is also experiencing similar woes, and what followed was a lengthy, open discussion about my troubles of the day and the effectiveness of linseed. It was that conversation that confirmed what I have long known… Cancer causes constipation and I absolutely love shouting it from the rooftops.

💩💩💩

EJB x

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