Tag Archives: revlimid

I Don’t Like Mondays

Tell me why?

Mondays were once upon a time reserved for me not wanting my weekend to end and my working week to begin. In my current treatment cycle, mondays represent something else entirely more negative and I have to admit that I am no longer a fan of them. Gone are the days full of possibilities of the week ahead and in, well, you’ll see…. There may have been a time in my past when I relished a Monday morning. I liked doning a new outfit for my working week that said ‘I’m coming to get you’. Now, that outfit I find myself in is usually my baggiest pair of pyjamas that I will wear for two to three days straight that says something more akin to ‘I’ll let you take me’.

To explain things more fully, I should probably explain that I was not prepared for the start of my new treatment. As something of a veteran now, I was cocky. I thought that I would start my treatment on a Thursday evening and anything to be experienced over the proceeding three weeks would be something I have experienced before. I strongly believed that I would find the treatment to be m easy, simply because I had done it before and lived to tell the tale.  

Unfortunately, my memory is selective. I had forgotten that in the lead up to taking a mountain of Dexamethasone and daily Revlimid tablets, treating my bowel is crucial. I forgot just how horrible it is not knowing when I am going to be unwell, and the frustration I feel when I cannot get out of bed , or successfully count up to 20 and have to watch from the sidelines as my friends live their lives and I lose my independence. During my first cycle, all of this came at me with aplomb. 

Much, much quicker than I had anticipated or hopes, the drugs took over and I could not get out of bed for two weeks. In these darkest of moments, when all I was was my medication,  confidence zapped, I could not see any longevity to my treatment and my life. All I could see was the promise that I would be taking medication indefinitely, unable to earn a living, both outcomes fail to offer me any reasonable quality of life. I’m not asking for parties every night and a warm bodied lover to keep me company, I just want some consistency and a life I can compare with my peers. Sod waiting for a monday to roll round, Cycle 1 made all the days simple merge into each other and made me feel like bother more than a thin veined puppet trapped in the walls of my flat, losing whatever looks I had left, becoming the charity case people contact out of duty. 

I know. I can feel your eyes rolling. 

As my current treatment is fairly similar to previous treatments, in my first cycle, I opted to take my steroids in one go over four days. My previous experience told me this would give me the most free time in the long run. Due to various factors, I ended up doing this after a week of feeling run down rolling into one long period of ineptitude, as well as m swallowing up my week off medication. That first cycle, was without a doubt the worst cycle I have ever experienced since diagnosis and I haven’t even mentioned some of the, erm, smellier side effects.

With the benefit of hindsight, everything about Cycle 1 was a mistake. From my laissez faire approach to it, to the lack of food in the house that could be cooked in the microwave or with a kettle, to my lack of forethought, to my belief that employment was possible, to failing to realise that three stem cell transplants would not have taken their toll on my already delicate body, to me dwelling on the long term impact and disrespecting the now, and mostly, my belief that nothing had changed. Despite all my inner talk about giving up, I believed I was strong and I could manage it with poise, skill and a smile. 

I was wrong.

I needed Cycle 1 to give me multiple slaps in the face. It made me slow down. It made me fill my freezer. It led to multiple trials of laxatives and antiemetics and I think on that front, we could nearly be there. Wherever there is… 

By Cycle 2, the funding for my Ixazomib had come through, that’s oral Cilit Bang between you and me, which once again meant some tweaking to my schedule was in order. When one takes 22-43 tablets a day, that means some tweaking. Firstly, and most crucially, the Medically Trained Person told me that I was no longer allowed to take my steroids in one go. A development that did not please me at all because I like to get the pain out of the way even if it does mean my mouth will taste like tin for a fortnight, my glands will be swollen for a week and washing my crevices becomes a luxury. The lovely doctor, who is not in the least bit scary, softened the blow by halving my monthly dose of Dexathasone. In case you were in any doubt, I live for these small mercies. 

Unfortunately, for the Cilit Bang to work at its optimum, apparently, it needs to be taken weekly, on the same day as the Dexamethasone. Can you see where I am going with this? I have chosen Monday as that lucky day. 

Monday is now known to me and my family, as Heavy Drug Day. My cleaner, who speaks very little English who comes every other Tuesday must call it something else, which probably includes the Russian words for ‘fat’ and ‘lazy’ as I move from one room to the other to carry on sleeping whilst she cleans around me.

In the last few weeks the perverse nature of my treatment has dawned on me. I wake up on a Monday, I could be in a brilliant, jovial mood on that said Monday, but ultimately, I know that at some point that day I will take a cocktail of medicine that will result in me seeing my insides. If he is in the right place and I am too slow, it will also result in the dog seeing my insides. One day, he ate it up as a healthy snack. And that is what my day becalmed. No matter how I feel when I wake up on a Monday, not matter what time I take the medication, I know how the day is going to end.

Such is the doom I feel, my apprehension now creeps up on a Sunday night. The knowledge that come what may, I am going to make yourself incredibly ill, hardly puts me in the party spirit. Most Mondays, I feel like a fool. I feel like I have been tricked in to taking part in some sort of top-secret military physiological experiment to see how guilible people can be fooled into delivering their own torture. It will make you better they said. It will. Now take all the drugs and every single supporting medication you have to go with it. Let it sit in your stomach and churn. Churn. Churn. Then you will see your family again.

The most brilliant part of all of this, is that it isn’t even the Monday when the worst of the side effects hit. It’s the Tuesday. I could have called this blog ‘I don’t like Tuesdays’ but the truth is I find the anticipation of what is to come and the knowledge that I do it willingly by myself, far more ghastly than what actually happens to me on a Tuesday. 

In case you are wondering, in the early hours of Tuesday morning, I will be awoken from my uncomfortable slumber covered in a light layer of sweat, and I will have to quickly get out of my bed and run to the toilet where I will be sick. That is called Vomit Number 1. I am then likely to be vomit up to four times more by lunch. The nausea will last all day. I will feel so weak that I crawl back into my bed and half sleep, half will the day to be over for the entire day.  

Housemate informed me yesterday, that  I do not help myself in this circumstance. I avoid liquids to rehydrate myself because it usually just ends up coming back up again. Not drinking adds to the overall feeling of lethargy and I do not eat. Not eating tends to make me feel even more nauseated and thus the cycle goes on. By nightfall, because I have spent most of the day in and out of consciousness and smelling like a rotting corpse, I struggle to sleep. My body is in all sorts of pain, from a sore throat brought on by my multiple trips to the toilet bowl, a suffering spine from having to run and crouch at said toilet bowl, all mixed with an indescribably horrid steroid comedown. 

It goes without saying that this means Wednesdays, well the Wednesdays I once knew, no longer exist either. I might not be sick on a Wednesday, but I will be weak. It will be unpredictable. I might be able to go to the corner shop for some fizzy water, I might even be able to drink the fizzy  water and follow the plot of a movie, but there is no way of knowing just what my capabilities are going to be on that day or indeed, on the the day after that. With any luck, I will get three reasonable days before it has to start all over again on the following Monday. 

From what I have managed to understand, the level of sickness I get from one tablet is the normal side effect. According to the leaflet that comes with the heavily controlled Ixazomib, I may experience some nausea after taking the pill, but I am definitely at the higher end of the vomiting spectrum. 

I have tried to change the time I take the pill, I have used five different antiemetics, in various combinations and yet the vomit is just as ferocious. The Medically Trained People tell me it is something I have to deal with. Do not be alarmed, I am paraphrasing, it was put to me in a nicer way than that, with understanding and empathy, but it does not change my circumstance of disliking Mondays. For the foreseeable future. 

EJB x

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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 Drug Regime

I have been on my new treatment for 12 days now. Considering I have been through it all before, twice before, it is taking some getting used to. They come with endless side effects. It is a list that is long and is literally a pain in my bum. Practically however, taking the drugs, sorting through the drugs, swallowing them and remembering to take them is a chore. It’s a regime, it’s a 24 hour drug taking regime. If I were lighter, I would rattle. I am not light, so I do not rattle. My overflowing drugs drawer does that for me. It is overflowing into my make up drawer and that drawer is already full. The stuff in the drawers isn’t even the drugs I have to take for the next week, for they are in my handy dosette box. It would be impossible to remember to take everything without the handy organiser. That’s a tip from me to you. Invest.

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I have yet to work out how many drugs I take every day. I am doing that as I type. I keep throwing numbers around, 15, 20, 30. You get the gist. It is a lot. This blog, will act as a useful exercise, if only so I can accurately boast about how many pills I have to take, when most people opt to take vitamins. Anybody who has myeloma, or any form of cancer for that matter, will not be surprised by the volume of drugs. Correction, free drugs. I know I must be used to the number of pills, by the volume I can fit into my mouth and swallow in one go. You have to give it to myeloma, it has given me one hell of a gag reflex.

As My Myeloma has given me some delightful feelings in my spine, I do not only take drugs to combat the disease. I also get to take a daily cocktail to manage my pain. Unfortunately, we are not quite at the point where that pain is managed. That will come. In the meantime, I am on four different types of medication, excluding the bone juice, which allow me to get out of bed. Currently, because I have decided to up my MST dose, I am taking more pills as the pharmacy decided to give me 10mg tablets instead of 30mg. They will receive a request the next time they dispense to be certain.

My four week treatment cycle involves three weeks on Revlimid, and four days (bar cycle one when it goes up to eight) days of steroids. So I can take these, I then have to take six other types of medication to protect my body from bugs and other fun things.

The Sharps Box is also back. It’s still yellow.

Oh, and as I still experience the side effects from the menopause, I continue to have HRT seep into my skin from a semi permanent patch on my bottom.

The contents of daily dosette box then, is currently like this (italics equals pain):

MORNING
1 x Aciclovir 200mg
1 x Ranitidine 150mg
1 x Allopurinol 300mg
2 x Docusate Sodium 10mg 💩💩💩
2 x Paracetamol
4 x MST 10 mg
1 x Diazepam 2mg

AFTERNOON
1 x Co- Trimoxazole 960mg (three times a week)
1 x Aciclovir
2 x Parcetamol

EVENING
1 x Revlimid 25mg
1 x Aciclovir
1 x Ranitidine
2 x Docusate Sodium 💩💩💩
2 x Paracetamol
3 x MST 10 mg
1 x Diazepam 2mg

1 x Fragmin injection

On Days 1-4, after breakfast, you can also add;

20 x Dexamethasone tablets

On my week off, I get to skip the Revlimid.

So, if my maths is correct, I take between 26 and 48 pills a day and an injection. If I am having a particularly bad day, I may also take 10mg or two of Oramorph and another Diazepam…. And I wonder why I cannot poo.

I’ll tell you something for nothing, it’s a lot of packaging.

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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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