Tag Archives: blood

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

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Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

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Something Borrowed

I am often being told that My Myeloma is not all my own. It would be correct to say that my illness is not all about me, the people around me have suffered effects of the illness just as I have; they’ve metaphorically and actually held my hand, they have lost a drinking mate, they put up with me and fained interest in me describing in minute detail what I have cooked on any given day, they have dealt with my mood swings and there are many, many more things that are too long to list here. 

Very soon (with my fingers crossed), somebody is going to be physically affected by My Myeloma. I will be borrowing something quite exceptional from my Big Sister. It’s beyond exceptional. It’s a minor miracle.  Just as this will be a new experience for me and a potential lifeline, it is a brand new experience for her. I’m not even sure if the word ‘experience’ encompasses the enormity of what she is about to do. I really isn’t just about me anymore…

Two weeks ago, Big Sister travelled to London for her pre transplant tests. From this, among other things, we learned that it is not only me who has to wait around a hospital.
And so, without further waffle, for one time only, I give you Big Sister:

I had known for 33 months that I was a match for my sister and that I carried round her magic medicine and possible cure. Just a few days after Emma’s diagnosis, my tissue was tested to see if I was a match. There was only a 25% chance that I would be, so we were all thrilled when it was confirmed I was a 10/10 match. I can still remember everything about the call from the hospital telling me this, and my phone call to Emma to tell her.

It’s been quite a responsibility carrying the stem cells around, if I had had my way they would have been taken as soon as we knew I was a match. I even carry around an ICE card in the event of an accident which states I am a living donor and they meant let me die until my stem cells have been harvested.

A few months ago, we were told I would need a medical before I donated. After months of asking, my medical for stem cell donation was arranged for the 11 June. I was anxious to say the least. What if, after all this time, Emma’s own stem cell transplants and our hopes, I couldn’t donate?
I caught the 7:21 train to London, sat in my reserved seat and tried to revise for my upcoming exams. Instead, all I could do was listen to the moron diagonally opposite me, try desperately hard to make conversation with the barrister next to him. Among the many conversation starters he came up with was ‘we all have cancer you know?’ I sat there wondering if I should say anything about his rather random and insensitive comment; in the end I figured my thoughts would be wasted as he was a proper know all. 
I hopped out the train and grabbed a taxi to St Barts. I was there a few minutes before my appointment. I was weighed and measured and then sent to see a consultant. The consultant was nice and cheery, he told me a load of things I already knew and completed a questionnaire about my health. I signed a consent form, the same one I give women at the hospital I am training at, before they have a caesarean, except this time ‘donate stem cells’ was written in the blank space.
Next, I went to meet my CNS, my very own CNS, how about that? She talked to me about dates, and we agreed that the harvest would start on the 22 July. I assumed this meant I had passed the medical, although no one said. My CNS then sent me for an ECG, and some blood tests.
I wandered round the huge hospital to where I was told I would get my ECG, only to be told the department had recently moved and I now needed to be at the other end of the hospital….so off I went. I was called in immediately, it took about 5 minutes to stick on all the sensor thingies and then just a minute to do the trace. I was handed the trace and told to take it back to the CNS. I was a bit reluctant to hand the ECG trace over before I knew it was ok, so I quickly Googled what a good trace looked like. Mine was similar, what a relief, so I handed it over.
Next it was time to take ‘some’ blood samples. Off I went, back to the main building and up to the 6th floor. I went and sat in a bay where other people were having chemo. A nurse came and started taking out the empty sample bottles. Now I am not going to lie, I hate needles, I always have and always will. Trying desperately hard not to embarrass myself in front of these poorly people that have to under go needles frequently, I let her take my blood…..all 16 bottles.

  
Finally, I was sent to the pharmacy to get my G-CSF injections. I waited over an hour, but they never appeared. It turns out that the prescription was wrong. As a result, I couldn’t meet Emma for lunch and Emma will now need to collect my injections for me at some point.

A week or so later, I had a text from my CNS to say all my blood tests were ok. The next day, I received a letter in the post from St Barts. My heart pounded a bit as I opened it, luckily it was a confirmation to my GP that I was suitable to donate, requesting they do check up on me following the harvest.

  
So after all that, and after 33 months, on the 18 July, I will start to inject myself with G-CSF, the growth hormone to make more stem cells. I’m not entirely sure how I will do this, but I will cross that bridge at the time. On the 21 July, I will go to St Barts for my pre-op tests. On the 22 July, I will have my stem cells harvested. They will be cleaned up and given straight to Emma. 
It all sounds quite simple. If simple means needles, stem cells and giving your little sister a lifeline. 

Can it really, finally, be happening?

EJB x




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Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

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Belated Anniversary

I woke up on Monday morning to send my friend a text message to acknowledge that the 18 August was her birthday and that I had remembered that fact, and in doing so, I realised that I had forgotten that the day before marked the two year anniversary of me being told that I had multiple myeloma.

Everything about that Friday, two years and four days ago, is burned into my brain, for as overdramatic as it sounds, it is the day in which my life as I knew it, changed. Knowing what I know now about My Myeloma, very little about it surprises me. It surprised me on the 17 August 2012 and forgetting the anniversary of that Friday two years and four days ago did surprise me. It surprises me because it is indeed the date in which everything changed. It might not be something worthy of celebration, but it is something I thought I would always remember, stop and think about when the clock rolls over to 00:00hrs on the 17 August.

In my defence since that day, there are other days in which I feel My Myeloma more than others, and thus at these times I pretend I am a mirror and reflect. Such days tend to feature a ‘small’ amount of wallowing and they include my birthday, Christmas Day and the anniversary of my transplant. I also spent much of Sunday on motorways travelling back to London Town after a weekend away and most of my energy was spent willing myself not to be tired. The reality on Sunday was that after a lovely weekend away in North Devon, I was extremely tired.

Such was my fatigue on Sunday, that I fell asleep for the first time in a long time, wishing that I did not know what myeloma was, let alone have it. I wallowed, even though it was not for the reason I imagined. It’s not a thought I have very often, because it is one that wastes my energy and only succeeds in making me feel sorry for myself and jealous of everybody else in my life. That is something I have had to learn over the last two years. I have also learned the hard way that I cannot go away for a weekend and not suffer the consequences for a few days afterwards. Feeling uncontrollably tired has been the overwhelming theme of my week thus far; something too that I have become all to familiar with in the last two years.

In my two years, I have relapsed twice, I have had an operation, a stem cell transplant, radiotherapy, had two full rounds of treatment and started a third. Today I start another round of radiotherapy. And that is just the medicine. Two years is a long time in Myelomaville. In this time I feel like I have aged considerably, I know I am wiser, the list of what I care about and the weight I give to the things on that list has changed dramatically. The list is far longer and I feel and care far more than I did BC. I have lost and gained weight and all over body hair, and there is a small chance that I have lost an inch off of my height. In short, there are times when I feel like the person I was 735 days ago, is nothing like the person I am today.

Myeloma has forced me to grow up, despite it’s constant and sometimes successful attempts to infantise me. So many things in my life have stalled, and yet in the two years so many things have happened. The things that have happened, in fact, the majority of things that have happened l, are not what I wanted for myself. They have happened however and the only option I have is to learn how best to deal with them when they jump up and slap me in the face whilst kicking me in my stomach. I frequently get my methods for dealing with the lows wrong. As old and wise as I think I have become, there are still days when I royally mess things up. Crucially though, I still get up and try everyday and when things do go array, I am likely to admit that it has, in an undisclosed time in the future. I then try not to do it again.

I suspect the real reason I forgot about this anniversary is because the current battle is garnering all my attention and focus. I do not have the time to reflect on what could have been. I do, however occasionally need to remind myself of what I have achieved in the last two years. I may not need to know how many Velcade injections I have had, but I do need to know that I have the strength to battle what is coming next. And do you know what? I know I have the strength because on this anniversary, I can look back at what I have achieved so far and say without any shadow of a doubt, that I do have the strength. Myeloma is hard, it is all so very hard, another thing I have learnt in two years, but my stoicism is proving to be tougher. It is tough even when I am inexplicably tired and moping around my flat for days on end, experiencing the occasional bout if projectile vomiting.

I attempt to take the difficult days in my stride. In the two years, I think I have almost successfully done that. Everyday for me is a battle of varying proportions. There was a while there where I had the pleasure of a temporary ceasefire and the challenges changed, but right now, I am right back in the fight. This time around, as I fight, I have a huge advantage on my side. It is an advantage that is a far more worthy way of acknowledging this anniversary in question. I have the knowledge of two years on my side and I use that knowledge everyday and it is that, that helps me get out of bed. It is that, that makes me strong. In case you were wondering, I know I am strong because a good friend told me so last week.

The 17 August – I salute you.

EJB x

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Trace

45, 36, 26, 29, 24, 23, 21, 20, 19, 18, 26, 21, 21, 20, 19, 8, 7, 5…

Since the 15 August 2012, when a junior Medically Trained Person told me I had an inaudible rare sort of paraprotein in blood, I have been plagued by it’s volume. For the first 12 months, it ruled my life and the monthly test result would determine my mood and resolve for the rest of the month. I lived and breathed that paraprotein level because so much of my life depended on it.

“We must get a partial response of 50% reduction.”

“It has to be below 20.”

“A complete response is 0, and it is unlikely you will get that on PADIMAC.”

“We think it has plateaued.”

“It’s 18, you can go to transplant.”

“I am afraid your paraprotein has increased and you will not be having your transplant. You will have another four months of treatment and then we will see”

“You are unlikely to have a level below 10 after your transplant.”

And so it went… I monitored it and everybody monitored it with me, using a plethora of emojis when it was good news and kisses when it was bad.

To preserve my stoicism, after so many dashed hopes, at some point last year, I told myself that I did not care what it was because I was tired of feeling like I was getting my A Level results every month. In the autumn, for the first time, my paraprotein level reached single figures and then I realised that I did care. The ability to live my life revolves around a figure I have no control over Once upon an infancy, I thought that reaching single figures would be easy, a piece of piss if you will, but for me, it quickly became evident that it would not be a piece of piss. It became out of my reach and the thought of not having a paraprotein level was not even a dream. It was a disappointment.

In recent months, I avoided asking what my paraprotein level was because I did not want to know that the life myeloma has carved out for me was over before I could take off the training wheels. I chose ignorance. Ignorance however, in case you wanted to try it, does come with an unhealthy amount of paranoia and self doubt; and that is how I have lived.

I had a doctor’s appointment recently. It was one of those situations where I had worked myself into silent hysterics prior, mostly because I was informed three days before it that I had to come in for an appointment and then as I waited, I saw The Senior Medically Trained Person and my palms started to sweat. At that moment, all I could think about was my paraprotein level. It had increased to be sure and I would be back to the drawing board.

That is not what happened.

In a matter of fact way, I was told that my current treatment was working because my bloods looked “very good”. Very good, I thought, I must be maintaining my status quo, and I satisfied with that despite struggling through my velcade injections every fortnight. Velcade and all it entails is the payoff. That said, a general comment was not sufficient for me, and seeing as I had made the effort to be half an hour late for my appointment, I used the opportunity to ask what my paraprotein level was and what do you know? I did not have one.

It did not and does not feel how I imagined it would. There are no fireworks in my head. Everyday continues to be an indescribable struggle full of sacrifices and walls, which yesterday’s day in bed would attest to. The overriding feeling I have and this latest development is relief, I feel like it buys me more time. More time to get used to the life myeloma has carved out for me.

Naturally, the Support Network were more enthusiastic about it than I. Emojis and kisses. They do not see that it changes nothing in terms of my daily routine, treatment and ability to see them. My favourite celebration was a fist bump accompanied by the acknowledgement that everyday will still be difficult.

That said, I did let myself smile. A few times.

🎉🎊🎉🎈🎁🎉🎊🎆
xxxxxxxxxxxxxxxxxxxx

EJB x

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The Big Poke

Last week, I had me a little bone marrow biopsy for a laugh. Not a laugh as such, more like a painful necessity, that I feel like I have become accustomed to.

The procedure was my fourth biopsy and I can confirm that it was very painful indeed. At one point, I am sure I screwed up my face so tightly, that it looked like I had it firmly clamped in a vice whilst constipated. Having done two of these bad boys by myself and two with another non Medially Trained Person, willing to chat utter nonsense to me whilst somebody is drilling into my hip, I can honestly say that giving in and saying that I needed help, makes the whole thing much much easier. Much easier. Friends huh, aren’t they just the best?

A few things distinguished this biopsy from previous ones. The first, and most embarrassing involves the Hot Flush. I know, I am still having them, for which my bedsheets are thankful. After the big poke, I went for some tea and cake and I got my sweat on. I got my sweat on real good. It was to such an extent that I sweated off the dressing on my hip. I did not even know hips could sweat, but evidently they do. I only realised that they do, when I went to pull my knickers down for fun and pulled that plaster clean off. As a consequence, I had to go back to the hospital, admit the unfortunate truth and get in cleaned and redressed.

The second issue that distinguishes this biopsy is the pain. It certainly hurt during it, but it’s the pain after that has me ouching. By the end of the first day, I was walking with a limp, something I would have previously saved for the drunken injury. And then the pain did not go away. It hasn’t gone away. I am no longer limping, but there is a funky feeling from the bottom of my spine round to my hip. My brain works in funny ways and I cannot recall whether the pain started before or after my biopsy, and this I find most frustrating. I am awash with paranoia. Paranoia and pain; everybody’s favourite duo. Will said pain subside? Is said pain real? Is my kyphoplasty reversing? And so on and so on and so forth.

The final point that makes this biopsy an episode of Fun House is the result. I suppose the result of the last one was important too, but that has been done and dusted. This is now.This biopsy determines what is going to happen to me going forward and that my friends, is all so very important. It’s serious stuff and I know that. I know that everyday, and I will continue to do that until I get the result. Just 10 days to go. Woo hoo.

Now, when you close your eyes to sleep tonight, just imagine me and my sweaty hip. Phhoaarr.

EJB x

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Give Me A Seven

It is rare for me to get excited about anything myeloma related these days. Gone is the time when I had targets, hopes and dreams. I still have a diluted version of the last two I suppose, I just liked the sentence structure. My dry wit, however, does, if one is reaching, offer some evidence towards the statement above that I really do not get excited about anything myeloma related. I have been there, done that and got the stem cell.

So, imagine my surprise this morning when I did get excited. I did jump up and down in my bedroom and I did</em scream out loud. As a result I did procrastinate so much that I had to get a taxi into town; that is my excuse and I am sticking to it.

In this morning’s post I was pleased to receive the note of my last doctor’s appointment informing me that my paraprotein level is no longer 8. My paraprotein is now 7. Seven. It didn’t go up.

I know there is not much in a point. It doesn’t change my circumstances. I have previously talked myself into thinking that a point up or a point down in the world of paraprotein means very little.

That said, for today, I’m going to let myself have a little bit more hope than I did yesterday, because recently, not even in my dreams was I hitting a seven.

A seven.

EJB x

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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