Tag Archives: failure

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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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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