Category Archives: Emotional

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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The Fear – Part II

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

Fuck. 

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

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

 Am I dying? 

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

I haven’t had long enough.

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

Am I a failure?

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

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

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

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

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

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

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

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

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

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

A lifeline. 

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

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

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

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

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

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

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

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

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

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

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

EJB x

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

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The Fear – Part I

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued….

EJB

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My Finest Hour

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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

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The Monologue

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

Hello there, if you wondered what the above was in reference to, I can confirm that that is my constant internal monologue, and it has been all week. It started on Monday. The countdown to my transplant started when I was given the provisional date, but what I would call the real countdown, full of irrationality, interrupted sleep and attempts to open a Spotify Premium account only really started this week. 

This morning, I woke up ridiculously early after a dream about having to do a last minute piece of work, a piece of work I managed very well FYI, at the place I worked as a bright eyed and eager teenager. The dream  also featured a lot of drinking , which meant I was thirsty, but that has no bearing on this particular tale. Although vivid, it is one of the better dreams I have had this week. The one that kept me awake on Sunday night was my classic anxiety dream. I was at school and I had not studied for my GCSE’s. The difference from the usual set up for this specific dream, was that I had myeloma in it and on top of managing that and my panic at having not studied, my fellow pupils were being inconceivably mean to me. The dream ended and thus my sleep with it, by me entering the Reception crying, telling the Receptionist that I could not go on, and then I turned my head to see Bruce’s bat ears and his walking mate coming to take me home. Monday and Tuesday just featured forgettable, but sleep depriving nightmares. I do recall me falling quite a distance in one of them, I might have been pushed… On Wednesday night I slept, but I wager that was because I had had an 11 hour day.

The point of this blog is not to tell you about my dreams, but it is to tell you that this week, I am feeling what I  imagined I would  feel this week and that is a barrel of various things that all amount to anxious. I am scared, quite scared actually, paranoid, preoccupied, sleep deprived, irrational and emotional. How is that for a toxic mix of feelings? My company is the best.

To be fair to myself, I think outwardly at least, I am managing it all slightly better than my list above implies. Well, as long as nothing else rocks the balance like running out of Bran Flakes. That however, is only because today is Friday and not Tuesday when my internal monologue was at it’s loudest and most booming. Plus, when I feel this way, I am more likely to be quiet around others than sob whilst bashing my fists against the floor.

By Tuesday, after a long weekend, I was convinced, in part due to an unresponded email, that my transplant was going to be postponed. I had convinced myself that the appointment I had the next day was not going to tell me that the tests I had the previous week were fine and I was transplant ready, but something quite the opposite. Something quite bad. My appointment on Wednesday did not tell me that, it told me what my rational side was telling me all along, and it is a truth just as frightening to me as my not so illogical, fictional journies of anxiety. Do not forget, I did have one previous transplant postponed at a time when I believed it to be a dead cert, and that leaves a deep scar that even Bio Oil couldn’t irradiate.

Although I have calmed down somewhat, I am still sleep deprived and faced with the fact that bar me getting a bug of some sort, I will be going in for a transplant in five days. FIVE DAYS! Do you know painful one of those is? I do, at least I think I do, for I do not trust my memory. I have either overestimated or underestimated the various pains I am going to feel, I just do not know which. I could, of course, have remembered it all exactly how it was and it is not a pleasant experience to remember. All I know is that it is coming… Hypothesising about how the SCT is going to go this time, what day I will leave ambulatory care, how long I will be in hospital, just makes my head hurt and my tear ducts open.

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

It is true that I do know roughly what to expect from the autograft, I do not know what is going to happen with the allograft. Some might, quite reasonably say to me that it is at least three months away and I should not be concerned with it, but this week I am not rational. As the monologue and countdown continues, I know that I have five days and five nights of (reasonable) health left. Thereafter, as long as there are no delays, an event of which I am in constant fear of by the way, my life is going to be all about the transplants indefinitately. Actually, they’ll be all over me and I cannot estimate when the time will come again, when I am going to feel fit enough to venture anywhere alone. I have a countdown to losing my freedom. A Twin yesterday likened it to a prison sentence, one of the indeterminate sort.

Next m Wednesday marks the start of something that is going to be long and arduous, which has an unknown ending. When I see that written down, I can see why this week is proving to be such a hard slog for me. 

Take the emotional tasks aside and I am also a person who has five days left to ensure that she has a fully stocked entertainment unit for the hospital, which includes somehow restoring her accidentally lost iTunes collection. On top of that mammoth task, I have to get photographs printed for the notice board, finish making birthday cards, tidy my room, rewash all my pyjamas, find Doggie, fix and clean EMan, pack, go to the British Museum, have planned fun, clean soft furnishings in the lounge (added to the list yesterday), make sure the delivery yet to arrive due to insufficient postage is in fact the 2metre Apple approved phone charging cable I think I ordered and finally, buy some cheap black pants. You have no idea how huge these tasks seem to me. It’s an epic mountain of completely essential tasks, similar to the one I made before my last transplant about defrosting the freezer and sorting the cupboard of crap, only, way more important and less optional. Let us not forget that these are all things to do on less sleep, with heightened feeling and an air of mania. 

On Wednesday, I was asked quite seriously and enthusiastically if I was looking forward to my transplant. To which I responded “yes and no”. One couldn’t really ask for more than that response to such a huge question right now, but I will try…. A few hours earlier than that silly question fell at my feet, I cried to my counsellor and expressed my fear that all this impending illness could be for nothing. I then, reasoned that if I did not do it, noy go through with it, the failure I fear so greatly, would definitely happen. At the time, I thought my revelation was inspired. Inspired maybe, but I still have an uphill climb followed by another uphill climb and I am sure I’ll lose that path along the way.

Over the long and incredibly short, next five days and I am going to try to hold on to some of the inspiration I found on Wednesday afternoon. It is inevitable however, that I will struggle with it as I have done since I woke up in the early hours of Monday morning.  There is melancholy around every corner. Everything, even Housemate waking me up this morning is a reminder of what I am going to miss.

In conclusion, I am terrified and conflicted about my treatment starting and I wish I did not have to go through it all again, knowing that this time the experience and pain is going to be multiplied by at least 2.5. I know I have no other option. I know it is the best course of action for me, but this week, I feel really sad and angry about that.  I am grieving the things I am going to miss whilst I am doing it. 

Come Wednesday… well, I have to be ready, don’t I?

EJB x

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The Urine Sample

Every month, I have the humiliation of doing a pregnancy test before I can be prescribed my Revlimid. The humiliation is on two counts. The first and hardest is because we all know that I, in all probability will not be able to have the babies the natural way, if any way at all. I am all too aware of this. The second count as also on a personal level, and that is as time goes on with my treatment with it’s stupid side effects and expanding jelly belly, the physical act required to get pregnant falls further and further away from my grasp.

Every 28 days, when I attempt to pee into a cup, I am reminded of these things. No matter how many smiles I am greeted by when the form is signed to confirm that I am not pregnant, I cannot help but feel hard done by. I was so much prettier in 2011 and I’m pretty sure I would make an awesome mother. Just ask the dog.

Given the emotions it stirs inside me? I have to mentally prepare myself for the question I get once a month, because apparently the negative urine sample is not enough. ‘Is there any chance you can be pregnant?‘ No there bloody is not. I am a essentially a barren leper who cannot tie up her shoelaces. The one time there was a remote chance of a ‘no’, Mamma Jones was with me, so I lost the satisfaction of the truth and still said ‘no’ to save us all the embarrassment.

The thing with a myeloma clinic, granted I have only experienced the one, but I am sure it is an issue that all childbearing age myeloma sufferers on Revlimid or Thalidomide experience in all the clinics across the land, is that due to the age of your average sufferer, the act of doing the pregnancy test is never seamless.

The test itself can often be overlooked until after the appointment, and even if it is not overlooked, I still have to get the jar, do my business and chase down a Medical Trained Person in front of other patients to give my sample to. To me, it just highlights my pain. And the question I ask you is this, who really wants to see my pee? Probably not the five or six people waiting impatiently for their appointment.

To cope with, or dare I say, to avoid the harder thoughts associated with doing the pregnancy test, I have decided to make something of an entertainment from it. The entertainment generally requires me being proactive, when it comes to serving up my pee. Even if I am in private with a Medically Trained Person, I will make a joke out of having to do it. Humour as a defence mechanism? No way. Not me.

Two months ago, I had to interrupt a Medically Trained Person talking to another patient to ask for the pregnancy test, and for some unknown reason, the look on the fellow patient’s face was a picture. I wanted to shout at him, that yes, young females can get myeloma and yes, we also have a less than 5% chance of getting pregnant and yes, I am painfully reminded of this every month. I did not shout at him however, I just took great pleasure in seeing the embarrassment on the Medically Trained Person’s face. She does not know yet that I do not embarrass easily. I did not get any humour from this month’s test, so I am using this to remiss about the good times.

Completing the sample is a challenge in itself. Like the Crystal Maze or darts. I am not one who can pee on command, so I have to make sure I drink a sufficient amount of fluids well before my arrival at the hospital (for your information, I discovered recently that being well hydrated helps people to enter my veins also), and then, I have to hold in the liquids until the appropriate time. I have started to blame this act for my weight, something that is also captured every 28 days (the nursing assistant felt the need 15 minutes ago to point at my weight last month after I was weighed today so I was aware of the further gain). You may not be aware of this, but the menopause can weaken one’s bladder, so there was one occasional three months ago where I had to find somebody quick snappish to release the pressure.

And now for the biggest challenge, something that has become a game, successfully and neatly, peeing into the jar. I have never been able to do this. Not myeloma never, but in life never. I got close to it last month, but all I way say about this month’s attempt is thank goodness they have bucket loads of antibacterial hand wash.

This week is special, because not only do I get to confront my fertility demons today, on a Thursday, I also had to do it on Tuesday morning prior to a MRI scan. Well, I did not have to do a sample, I was just asked the question.

I do understand that it is a legal requirement, but sometimes, I would like people to realise that it is not just a tick box exercise to me. And, let’s face up, there are so many other things to wind myself up over on clinic day. So much.

On a lighter note, here is my pee. I can confirm that I am not pregnant.

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EJB x

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Volume II: Déjà Vu

As much as it may have appeared to you that my last blog was intentionally brief and not proof read, thus expressing my raw emotion and anger at my current situation, I can confirm that that was not my plan. As much as I like dramatic emphasis, I also like a beginning, a middle and an end, more than that however, I enjoy something that resembles a point. Let this be a lesson to all you bloggers, do not put your mobile phone into the pocket of your jeans, when you cannot walk straight, mid blog post. Intentional or not, it proved to be one of my most popular blog posts to date. Alas, maybe all my blog posts should be as punchy; I just have too many words in my head.

The initial intention when I started to write ‘Volume II’, was to provide an informative overview of the new treatment plan with a rousing, motivational ending full of cliches, about how I was going to fight and not flight. The ending of course, would have you applauding me for my never ending resolve, whilst saying to anybody you encounter that I am an incredibly brave, independent, woman worthy of an OBE. I suppose I have cut to the chase a bit, but at 05:00hrs in the morning, let me see what I can do.

And so, it starts all over again.

Yesterday [we are now talking about last Thursday], the plan, if you can call it a plan for me, was laid out before my eyes. It is with great pride that I was able to make it through the appointment, where it was confirmed to me that my life would once again be fatigue fuelled, without crying. I may have swallowed more than usual, but I did not cry. I saved the crying for Mamma Jones over our laksa soups, by myself on the bus and pretty much any other place I went last week.

So, after 60+ Velcade injections over my 22 month myeloma lifespan, we are no more. After two relapses and a transplant, it has been decided that my stomach can be spared of further marking and my limbs can hopefully, be spared of the pin and the needle. It’s going to be all about the tablets. Unlike my recent Velcade injections, there is nothing about the new treatment that can be considered maintenance; it is a big fat, steroid supported course of treatment.

For those of you in the myeloma-know, my treatment will not be that surprising. It consists of a four week cycle, with three weeks on and one week off of Revlimid and a pulse of steroids. The first cycle has not one, but two pulses of steroids. I will remind you all, because it is a fact burnt onto my worst nightmares, I do not get on well with the ‘roids. At it’s most pleasurable, dexamethasone gave me a beard. I do not like having a beard. The two drugs are supported by a whole host of other drugs, but I will share those with you when I collect them tomorrow. As a preview, I think I am returning to the territory of 30+ pills a day. Chalky.

I start the treatment on Wednesday. Tomorrow, I get to have my seventh bone marrow biopsy. I am looking forward to the cake I get to have after that deed is done. Although I know the start date, I have no idea how long I will be on the treatment for. I know that I have been given permission by the Medically Trained People to go on my booked holiday on 1 October, so one can assume that I will still be in treatment then. It’s a big black indefinite hole.

The treatment I will be on does not come with the hope of a prolonged remission. Thus, there will need to be a decision made in my months to come about me having an allograft. Two months after my autograft last year, I made that particular decision about the donor transplant and that decision was a go. All or nothing. When I made that decision, I did not know that I would have to think about playing my trump card so soon. It is a terrifying prospect.

There are going to be many a side effect coming my way, not least the return of the fuller beard. I am not kidding myself, there will be fatigue, so much frigging fatigue that looking at me will have my guests yawning. As a result of the fatigue and the chemical imbalance in my body, I imagine that I am going to have the odd moment of feeling overwhelmingly sad. I am preparing for these inevitabilities. The latter side effect will not be helped by the fact the treatment is all home based. I need daily interaction and the lack of it, was the hardest thing I found with VDT/VTD and my post transplant recovery. Without interaction, which intravenous meds afford, though nowhere near as much as living does, I fear myeloma will take over.

Having been through all this before, my sense of déjà vu tells me that I need to have sufficient home based activities to prevent the madness. That is just one part of my sanity preserving strategy. I know that I need to get better at asking people for help, even if that help is just company. Flip that coin however, and I also need to be able to say ‘no’. The above three things are far easier than me being able to eradicate the current guilt I have over my relapse. My relapse has let people down; it’s let me down. I am yet to start my treatment, but in the last three days, I have had to forgo two important events because of My Relapse. I hate that my will is not currently strong enough to fight my myeloma. I have never considered myself unreliable, unless the topic is defrosting the freezer or clearing the end cupboard, before. I hate it. In fact, hate does not even begin to cover it.

It has been a week since my world once again imploded. There have been too many emotions to list them, and too many tears to count them. I turned a corner on Thursday, but it would be naive of me to think that my negative thoughts have been banished from my week, let alone forever. It’s a journey and there are going to be highs and there are going to be several lows. I may lose all my money, I will lose my hair and I am going to fight to not lose any more of myself. It’s going to be shit. Monumentally, shit.

I know I am not ready to give up yet. My relapse puts me between a rock and a hard place, and the only option for me at this moment in time is to fight. I will fight for myself and I will fight for everybody in my support network. I cannot give up yet, I am only thirty years old. I still want to see me at forty, even now there is absolutely no chance of children. It’s an uphill battle and I am not ready to lose it yet. I cannot lose it yet.

And so, Dexamethasone and Revlimid, bring it on.

Bring it on, again.

EJB x

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The Vacation

And so there it was. A holiday, a vacation, a trip to somewhere that was not the hospital, Mamma Jones’ or a basic hotel in Wakefield located off the M1. My first holiday post diagnosis and post transplant is complete, it is done, it is over. Finito. As I type this, I am sitting in a bar surrounded by my hand luggage, EMan and Mamma Jones waiting to disembark from this tiny boat from where we will begin our journey back to London Town. I am using this waiting time most productively and I am reflecting. I will probably still be reflecting when I return to London.

I love reflecting. I seem to reflect all the time. My permanent state of reflection was, as the title suggests, present throughout the last seven days. If anything, being in different surroundings and different circumstances, outside of my protective myeloma bubble, made me reflect more than usual. I know what you are thinking and yes, ‘crikey’ would be appropriate right now or indeed so would ‘shit, here she goes again’.

I can honestly say that this holiday has been the most delightful seven days I have experienced in a long time. I may have been a lazy, cruising and thus slightly unimaginative Brit abroad, but in being that, I have been able to safely see beauty in things that one would not find in my 21 month long Bermuda Triangle. That is all I wanted. I have sailed into various pretty ports, enjoyed the luxury of using my credit card for multiple massages and acupuncture, sat and ate and expanded and took so many photographs that only I will ever be interested in them. I have been to Venice, Kotor, Corsica, Corfu, Genoa and Rome, and rediscovered my love of a sunset. Tasty.

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Of course, things are never that straightforward. Everyone, accept the self entitled elderly folk on this boat, knows that I have been delivered quite a curve ball in life, limiting my enjoyment of it. I can say with a tongue most bittersweet that going on holiday, whilst wonderful, highlights a number of the the bad things myeloma loves to dish up at the all you can eat buffet. My current state of reflection may exaggerate it, but I knew on Day 2 that myeloma makes the act of a holiday hard. I knew this when I was forced by my body into going for an afternoon nap, whilst simultaneously feeling I had just been kicked in the back by an ass as his buddy, the wild boar attempted to remove my armpit. Everyday since has featured a similar period or periods of sheer exhaustion, zombie-dom and an uncontrollable desire for Oramorph. Evidentially, these periods have been at odds with my overall excitement and determination.

A holiday by definition is a period of leisure and recreation, and will usually experience an interruption to one’s schedule. For me, my daily life is structured far more than I wish it and this is done to allow me the chance to feel like I am living it. In going on holiday, I naively assumed that I would not need to factor in as many break times and that my sheer will and excitement at being on holiday would overpower My Myeloma. I was incorrect. Myeloma makes holidaying hard. It makes it hard because I had to wait so long to have one skewing my expectations, a change in routine impacts on both my pain levels and the productively of my bowel, I could not swim not sunbathe, and most of all, I felt like my need to lie down or go to bed at 22:00hrs every night was wasted time. It was like resetting my understanding of a holiday.

And this is the bitter part. I knew my holiday reality, I think I did anyway otherwise I would not have agreed to a cruise or planned the excursions I did, but I think I really hoped that My Myeloma would not impact on my ability to do whatever I wanted to do. The only limitations on a holiday should be monetary and I have always found ways around this. There is no way round the fatigue.

Fortunately, I am well versed in managing the disappointment myeloma produces and thus, the sweetness far overpowered the bitterness. There may have been frustration, but I managed to find the fun in every good hour my body was awarded. I even have a few achievements in physical capability, which has made me think that in a few years, maybe my body will let me walk up Monument. Who knows? It’s a nice feeling to hope for something that feels remotely within the realms of possibility again.

It was silly of me to think that a holiday would be any different to any other part of my life when it comes to my relationship with myeloma. There are limits and concessions to be made everywhere.

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And so there it was. A holiday, a vacation, a trip to somewhere that was not the hospital, Mamma Jones’ or a basic hotel in Wakefield located off the M1. It is complete, it is done, it is over. As suspected, this holiday meant so much more to me than simply a holiday. It was a huge milestone and one that I gained more from than what it showed me I had lost, and my
my my, is that a wonder.

EJB x

P.S. In 10 days, I am off to Berlin. There, I will no doubt learn more concessions whilst pretending to be like any other 30 year old. One is excited.

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My Most Emotive Subject

I am as good at meeting deadlines with my blog as I am currently in my work. With that in mind, let me tell you about my Valentines Day. For those unromantic types out there, the date in question was 14 February.

In stark contrast to previous years in which I have been a single only marginally dreading the day when couples show off their lust disguised as love in a sea of red because of my own traditions, I wholeheartedly dreaded the 14 February 2014. I did not want it to happen. There was no tradition, but that was not getting me down. The 14 February was the day I had to see the Person Medically Trained in Women’s Bits. To you, this means that the 14 February was the day I got to sit down six months after my transplant to find out just what it did to my lady bits. My most emotive subject.

I know, and have known for a long time, what My Myeloma has done to my fairytale dream of living to be a granny with a house full of bric-a-brac with photos of my children and their families scattered about for all my guests to see. That is a sentence that I cannot say out loud. And thus, as the day drew closer to the appointment, my dread grew along with a fear of the words I know to be true, but did not want to be confirmed. You. Are. Infertile.

The scariest part of the appointment anxiety, as this is my most emotive subject, is that I did not know what my reaction to the news would be. I had already poorly attempted not to cry in front of the Person Medically Trained in Women’s Bits on two previous occasions, so for this appointment, I thought that mass hysteria was an inevitability. Also, the doctor is something of a cold fish, which does not assist in her delivery of bad news. So, I lined up a Maurice to attend my appointment with me, which eliminated some of my concerns in the lead up to Valentine’s Day. I also strategically arranged a counselling session on the Monday after the Friday before in order to help me deal with the aftermath.

I should be honest, the appointment was mostly arranged by the lovely haematology people because of the side effects I was experiencing as a result of my menopause and infertility, which in turn, are a result of the chemotherapy I had on 17 July. For those who are not preoccupied with my life, the side effects included horrible hot flushes, a lack of flow and other things connected to moisture. Mostly the hot flushes. Hot flushes are vile. They are also embarrassing, particularly if you are obese and trying not to adhere to a stereotype.

It took four months for the department to process my referral, despite me having already seen them twice. That is a lot of sweat. I had a month after I received the appointment date to dwell and image various scenarios in which the result was the same. A fortnight or so prior to my appointment, given the efficient administrative process, I phoned the department to ask whether they required me to have any blood tests to look at my hormone levels or whatever else they look at when they are looking at what I wanted them to look at. A nurse, I presume she was a nurse, called me back and vaguely said that if they were required, they would have been requested. I objected to this, but hey ho, I just wanted to make the most of the appointment and rip off the rather large plaster that constantly itched.

The appointment arrived and, unsurprisingly, it was no where near as bad as I had imagined. Maurice was there to hold my hand of course, which was invaluable. I described my symptoms and the Person Trained in Women’s Bits confirmed that I was going through the menopause. Some symptoms I had been suffering from that I had attributed to myeloma, were apparently, also menopausal, including a weaker bladder and aching joints in the morning. I thought these things were connected to age more generally, but no, in women, it is menopause. I am sure there must be other reasons.

For this so called menopause, I was prescribed HRT in the form of patches, which I wear everyday on my buttocks. Said patches slowly release oestrogen, which will then do a whole host of things to my body, including reintroduce a period. This news came five days after I cleared out my tampon drawer, so I was annoyed.

Then there was the hard stuff. I have less than a 5% chance of conceiving. I believe this is said to protect a Medically Trained Person’s reputation in the event of a miracle, but really it means, you are not producing any eggs. I heard her words and I did not cry. My strength during the appointment astounded me, and I suspect that that came from having somebody with me who did not mind me talking about my vaginal dryness. I even summoned the strength to ask a question Big Sister had armed me with. Can I carry a child?

The short answer is yes. I can carry somebody else’s bun in my oven. There is currently no damage to my womb. A slight flicker of hope.

The long answer is more complex. It goes something like this. Yes, I can theoretically carry a child, although I am not sure what consideration would need to be given to my lesions and whether they would veto any plans to knock me up. I would also have to lose about a third of my body weight in order to get any form of IVF; this is probably no bad thing in general and would help me in one of the points below. My womb is fine now and has not been damaged by my treatment, but if I require an allograft before I can do the above, the radiotherapy would most likely destroy any hope I have of breeding. On a more practical level, I am single and I am not getting any younger. I would have to find a man who accepts my standing and decides that he would like to spend the rest of my life with me and I have had no luck so far before the hurdle of myeloma. How would we pay for it? And then, the question that terrifies me the most, if the medicine is available to me, would it even be fair to bring a child into this world when Wikipedia tells me that the probability of me living to it’s tenth birthday is slim?

And thus my dreams hover over a flushing toilet.

For this, for all of this, I hate myeloma. I may have held myself together in that appointment, but I grieve for what I have lost, I cry for knowing at some point, I may have to make a moral judgement and for the possibility that I may never be afforded the opportunity to make that judgement.

The appointment itself was anticlimactic. Like I said at the start, I knew what was going to be said, whether I wanted to hear it or not, and I think I had managed to shed my tears in private.

It has been five weeks since my appointment and in that time, I have gone through a pack of my patches. I also got frustrated when I asked for a re-prescription from my General Practitioner and they insisted that I visit them to be thoroughly assessed because the person who specialises in all things womb, had been remiss, according to them, to have not fondled my breasts. Needless to say, I found this a ridiculous waste of time and a drain on valuable NHS resources. Of course, I failed to say this to the GP. In the six weeks, my hot flushes have lessened, my nausea has increased, 50% of the time I can sleep through the night without nature calling and yesterday, I was reacquainted with my flow. It was rather novel.

As for the other stuff, I try not to think about it at all, but living in the world, one sees babies, if they do not see them, they hear about them and on these occasions, all I can do is swallow.

EJB x

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The Littlest Things

Yesterday, I decided it was high time for me to tidy my drawers, because I Housemate did his, and I felt like even more of a sloth than usual. I would like to confirm that I am lying in my bed as I type and I can confirm that
I am glad that I took the time and energy to do this. As I was doing the deed however, my emotions were mixed.

My drawers are a set of six, which sit to the lefthand side of my bed and house the things that do not need to be on show. Catch my drift? There is a jewellery drawer, a make up drawer, one and a half drawers of mementos, a draw of toiletries and other things one can purchase from a chemist and the remaining drawers are (were) drawers of crap. The whole clean up accounted for one dustbin bag full of crap.

As, I opened the third drawer down yesterday evening, I found something, or should I say, somethings, that I have not required for a long time and consequently forgotten were in existence despite them coming in a range of sizes and brands occupying the majority of the drawer. It then dawned on me, that I would not require them ever again, and as I thought about what not needing them ever again meant, a teeny tiny tear fell down my face. And then a few more followed.

In this strange remission world, especially in the one where I try and remain positive, I avoid thinking about the things that have changed since I was diagnosed and the things I have lost since I was diagnosed. Sometimes unfortunately, even when you are doing the most practical of things, they just creep up on you, at least they do on me anyway, and when that happens to me, all I can do is give myself a minute or five (ten).

I gave myself five minutes to think that I will never again be caught short when out and have to ask a female friend or worse, a female colleague,
an embarrassing question. I gave myself five minutes to remember what it was like for my body to act like clockwork every 29 days. I gave myself five minutes to curse the hot flushes. And I gave myself five minutes, because all of the above means that I cannot have babies.

I then cursed myeloma.

Once composed, I stared into the drawer some more before I scooped up the contents, which included two half full boxes of the same thing, and put them in my black bag. I then left my room and was told about some of the benefits of not having to stock up in Boots every month.

Other things in the drawers that also contributed to a wee bit of insomnia and yearning for a simpler time last night, included;
• Hair bobbles (I thought I had dispossessed of them all)
• 2 x paddle hair brushes containing long brown hairs, which I felt the need to finger
• Prophylactics
• Old photographs

On the plus side, I was reminded that myeloma has significantly increased the quality my remaining toiletries and thus, I am unlikely to need to purchase any moisturiser any time soon (shower gel and bubble bath on the other hand…).

EJB

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