Car drama:(

I wonder why things happen all at once sometimes. Is it the stars aligning or just WTF?

 

My daughter has a nice CRV Honda 2007.  When she drove in the other evening I thought I heard something from her engine. Then the next morning when she started it I said Whoaaaa….you can’t drive that.

So she took the Santa FE.  B and I drove into the Honda dealer and the news was grim.

Back a month ago when she took it to see what was up with the A/C, they said the whole system was shot. $5000 to fix. So she said no thank you. The guy said she could still drive the car no problem.

Well, Big problem as the pulley and belt are ready to come off and that would ruin the engine. So we were at a stand still because she still owes $5000.  So now this fix was what???

So when I went in this morning, he explained that the pulley and the air compressor ( not a Honda part) will be @ 1000. And then they would disconnect the electrical to the A/C.  I’m actually not sure why they didn’t do that before. Hummmm , maybe a mistake on their part. Anyway…..

We thought to bring it to another garage and have them do the whole AC for $3000, but now that he’s offered this, I think that’s the best way to go so I said go ahead.

At least this way she can still use the car , pay it off, and then next year trade in for something newer.   GEEez what an ordeal and so stressful.

I went to Grocery Outlet for some vitamins and a few items and now home. I think I can finally relax.

Well, she will still have to figure out driving Tuesday as B needs his car to go to San Francisco for work.

Yikes, what we do for our ADULT children…..

 

 

 

Midweek…..

Monday ended up very traumatic but at least it ended on an up note. Ollie our 15-year-old cat has thyroid cancer and a large tumor. He is my daughters first love. 🙂

So Monday morning he had a breathing attack and we thought he was a goner. He wasn’t able to really breathe in as he had saliva in his throat.  It looked like he was going to kitty heaven. We called the mobile vet and said it was an emergency and we needed him euthanized.  She arrived in about 30 minutes. Ollie was breathing better and up an moving a little bit.  We then were unsure what to do. He seemed ok. Should we still put him down?? We just couldn’t decide. In the meanwhile the dogs needed their heartworm tests, so she did that. By that point, Ollie came outside although he was still wobbly.  so in the end, we decided NOT to do it.

I’m glad as it seems he’s back to eating and so forth. We know it’s going to happen at some point again but for now, it just wasn’t the right moment.

It was very traumatic though and we were crying. But for now, it’s good.

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This is Ollie and Rocky( the rescue Border Collie)!!!

Ollie came from the rescue place too. He was maybe 8 weeks old and a snotty little thing. He grew up to be almost 20 pounds. He’s part Maine coon. Now he’s pretty skinny but he’s still a love boy!!

Over the years, we have had many pets and have had to put down many pets. I have learned about love, healing, death, the circle of life and much more from our pets and I’m grateful to them for that.

I’m not sure I want any more pets at this point. But they do bring joy. I’m just not sure I want the heartache when they’re gone. I’ve been thru it so many times.  I still miss Tucker, Blackie, Princess, Jason, Papillion( my first true love), Coyote( who in fact was part coyote and we found in New Mexico out in the desert abandoned), and so many more.

So Tuesday was a better day and we went to the gym. B is off to Eureka for the week. I wanted to go but someone needs to be on pet sitting so I guess that’s me. That’s okay. Last night we had a yummy zoodle dinner with one of the yellow zucchini from the garden.

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Then I topped it with some organic beef sauce basil from the garden. Pretty yummy. I’m enjoying the zoodles.

Today is another hot one so I’m heading into Auburn to drop off a thrift store load and then back home. Not sure what I’m doing for dinner. Something easy.

 

Darzalex as a single agent

I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much.  It’s not like it was in the beginning.  I used to wake up every day, and that was the first thing I’d think about. That was 2003.  It’s just a part […]

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, whilst holding somebody else up, on 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 by 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 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 not 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. 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 two or three days. I am awaiting 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.

2 Days left of JKWP, lesson: everyone has a story!

Life is about learning and living. Each day is new. The past is gone ,tomorrow, who knows. But we have today.

In the same way of thinking, each of us has a story. Some are happy, some sad, some traumatic some rich, some poor. You get the idea. the point is we all have a story. It is what makes who we are in this moment. Its not for us to judge that story. We can’t be inside someones mind to know what their story is. So, when you meet someone grumpy or depressed or even happy, remember we all have a story.

At this point in my life I am not religious(been there, done that), or even that philosophical (been there, done that), But I try and practice kindness and be aware of just being nice to those I meet. Sometimes it works, other times I fall short. Its all about the journey.

Sunny Fall Day

This is my cat, Peeps, taking a snooze on the back porch on a sunny October day. Peeps has been with me for a few years now.  She showed up at my house one winter.  I called her Peeps because she used to stand up at the door and peep into the house through the …

30

I am thirty years old. I have just turned thirty years old. It is no coincidence. Today, the 24 May, happens to be my birthday.

Great Stuff. Super. Cool..

I would prefer if it were not my birthday today. I would have said the same thing last year, but I will say it again, I no longer feel like celebrating my birth. Sure I like the cards, attention and presents but I have cancer to fill that void.* My birthday to me, represents not that I am getting older but that I am getting closer to my death. You might say that this is the same for everybody, for that is what ageing is. I think, the difference is that myeloma odds tell me, I have had more birthdays than I am still to experience and that is not something my peers can say. I do not feel like celebrating that.

. Don’t believe the stats, don’t believe the stats. Hypothetically, if I were to allow myself a brief period to fully embrace the stats, the birthday would be the time to do so. Along that line then, I have eight birthdays left. Eight whole birthdays. Add in a milestone birthday into this mix of negative thinking and what do you get?

I have experienced over three quarters of my life and I have a mere quarter of it left.

This of course, then begs the question about whether I wasted my first 30 years. I am sure it is normal to go through some sort of reflection, even if it is only to consider the cause of non-existent wrinkles when one turns 30. I have tried to go through the usual, getting older type of reflection, but the problem with reflection is that it leads to planning or some sort of hope, and I cannot do that long term.

I cannot buy a house, have a family, maintain a garden if I had a house and I am perpetually single. There are so many aspects of my life that on the face of it, makes me look like I have not grown up at all. Some of these things are not caused by My Myeloma, but they are not helped by it. Going forward, they will prove much harder or even impossible to get and that is because of myeloma. When I reflect, like I am today because I am forced into it by the date, I would say that I should have got myself these things when I was ‘healthy’. It is all one big cycle that I do not need to bore you with. Needless to say, it does not make me feel good about myself. It usually ends with me being jobless, single and living with my mother supported by the State, before I die prematurely because that is what myeloma does. It kills people as well as ruining their birthdays.

I have received many nice cards and in some, the sender has asked whether I can believe I am thirty in the way I put it in theirs. The answer to the question is a yes, I do believe I am 30 but I do not believe I will make it to 45.

And that is the 24 May.

Anticipating these fine thoughts, I decided the best thing to do was to invite myself to Berlin today. I can almost trick myself into thinking that that is what my day is about.

Happy Trip to Berlin Day. I’m going to the airport!

EJB x

* I think I need to be absolutely clear on this point. I may not enjoy the act of my birthday nor the reminder that it hammers to my forehead about my life being different now, but, the attention and messages one receives on their birthday are welcome.

It’s complicated and I am needy.

Not normal

Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to dinner and concerts, speeding around the country, planning a house extension, doing courses, buying clothes and treats. It looks like fun.

Some may even feel envious, resentful. Yes, I have seen it. And I’ve experienced some pretty bad behaviour. What??? Yes, I know!

Don’t get me wrong. It IS fun. A LOT of fun. I’m having a blast. At the moment, a lot of how I’m feeling is down to the euphoric effect of the steroids I’m taking. But even without the steroids, life is good at present.

Good, but definitely NOT normal. Or not the normal-for-me that I used to know.

I don’t feel sorry or sad about it. I don’t mourn for my old life. I am lucky that my character has allowed me to accept how things are relatively easily. Everyone deals with the initial shock and horror of a cancer diagnosis in their own way, but there is usually anger, disbelief, grief, fear, etc. However as time passes, that can change and it has for me. I don’t claim any great enlightenment skills. I pretty much surrendered to it all from the beginning and that has worked well for me.

This is not the case for everyone though. I have met people, even at a similar way down the cancer road to me, who are not at ease, who rail against it all, angry, heartbreakingly sad and resentful that this is not the life they want, that they’re not getting what they think life promised them. I can’t say I don’t judge them for it, but I certainly do not judge them harshly. I wish them ease and acceptance. But each of us has our own journey, so they will hopefully find something they need along their path, a much harder path it seems to me.

I cannot say that I’ve enjoyed the journey, and there have definitely been times that have been really tough, that I can’t explain to someone who hasn’t been through something similar, at least not in a way that they can really ‘get it’.

I am fortunate that I have good care, good loving people around me, access to free-to-me medication from the wonderful National Health Service [NHS], access to both government benefits and financial support from my family that allow me to do all those things above. And that allow me not to live in fear of extreme poverty that I know others face.

BUT it is NOT normal.

I am writing this at 5:45am on a Wednesday morning, in a fresh, modern, very comfortable, hotel-style bedroom at the Penny Brohn Cancer Care Centre, where I’m participating on a Living Well with Cancer 2-day residential course. All free!

I’m wide awake and have been for over an hour. I look to my right, to the bedside table and see the medicinal accoutrements of my life.

This is a list of all the medication I take currently:
Penicillin (antibiotic) as prophylactic
Aciclovir (antiviral) as prophylactic
Fluoxetine (antidepressant)
Imatinib (protein tyrosine kinase inhibitor) for lung GvHD, although usually prescribed for Chronic myeloid leukaemia [CML]
Prednisolone (steroid) for lung and sclerodermatous GvHD
Montelukast (Leukotriene antagonist) for lung GvHD/asthma
Lansoprazole (proton pump inhibitor) to protect my stomach/guts against the other meds
Azithromycin (antibiotic) for lung GvHD
Alendronic acid for bone protection due to osteoporosis
Seretide inhaler (steroid) for lung GvHD, complete with an AeroChamber Plus for administering the drug
Posaconazole (antifungal) to protect against oral thrush
Nystatin (antifungal) to treat oral thrush
Vagifem (oestrogen pessary) for vaginal GvHD
Lacrilube ointment for dry eyes
Systane Ultra eye drops for dry eyes
Omega 7 for dry eyes (not prescribed – food supplement)
Menopace Plus for post-menopausal well-being (not prescribed – food supplement)
Eyebag (a heat pad for the eyes) for dry eyes

In my handbag I always have a supply of the Systane eye drops, Paracetamol and Codeine tablets and boiled sweets or mints (nothing too strong) for my mouth. Yes, I know sugar isn’t good for thrush, but that’s my choice. I can live with the thrush. It won’t kill me and it will go once I’m no longer on the steroids. This conversation is NOT normal. But it is for me these days.

I’m aware of a tightness in my torso and lungs, tingling in my feet and legs, stiffness in my legs and vague aches at my knees and elbows. I know when I get out of bed in an hour or two, that I shall not be nimble, despite the steroids. I huff and puff and cannot bend well to put on underwear, pants, socks, bras. None of this stops me, but it is NOT normal.

I know that later in the day my eyes will become blurry due to the steroids and neither the eye drops nor the eye bag really make much impact, or not for long. This has affected my day-to-day existence. My friend, concerned for me, insisted on driving me to/from Bristol. It was relaxing being chauffeur-driven, but it’s NOT normal.

I have a whole new vocabulary of medical terminology. I have become an expert patient. My immune system may be compromised but my scientific curiosity has been energised. I enjoy learning all about this disease and it’s treatment. This is NOT normal. I was never a scientist.

Many cancer patients and probably others who develop diseases/conditions that are life-shortening, who had a ‘normal’ life previously, talk about “the new normal”. And this is how my life is now.

Disbelief

For the last fourteen days, I have wandered around the corridors of my flat in a state of disbelief, doubting my ears and those belonging to the head of Mamma Jones. When I was bored of that, my brain waited for the other shoe to fall, because in my world, it almost always does. The shoe drops to the ground, damp and covered in holes, and myeloma wins some more in this game we call My Life.

Let’s face it, since the 17 August 2012, my life has hardly been the warehouse party I would have liked it to be. There have been ups and there have been downs. There have been good cylinders and bad cylinders. There has been treatment and after treatment and setback after setback. I feel like my stoicism, made way to a pessimistic realism disguised with a smile and nifty wordplay.

The last 15 months have not been easy, just in case you were in any doubt. Anybody who wants to know that can know that, because I have recorded them for all the world to see, accompanied by a plethora of grammatical errors and melancholy. The fault there belongs to the drugs and not to me, I assure you. I was once as hard as nails.

The last 15 months has changed me irrevocably. Sure, much of the old me is still about, but to be dramatic, I am not what I once was and nor will I ever be. My Myeloma and me will be forever entwined; the blood sucking, life zapping, filthy bastard that it is. We’re together now and that is how it has got to be.

Two weeks ago, I heard something, four times, that defied my expectations. Unlike many people, who I wanted to greet in a dark alleyway with a pair of nunchucks when they opened their mouths or touched a keyboard prior toy transplant, I did not believe that my transplant would give me a remission. At some point, I was told that in all likelihood, this would not happen. To protect myself, that is what I had to expect. After the dogged stubbornness of my disease, the chances of my transplant failing right off the bat, were high. And still, I went in fighting, backed up by my Support Network, waiting there like a fleet of Lancaster Bombers, with teddy bears on board to protect and comfort me.

And here we now are, back to that pesky disbelief. I did not want to write it down for fear of jinxing it, thinking that I would force the gods that be, the Medically Trained People that is, to shout “CORRECTION, it’s not over, we’re giving you another round of treatment because we have to, and thus, you cannot resume your life.” I definitely did not want that to happen. I do not want it to happen.

I may have uttered the words to one or forty people close to me, but I have not believed them. At a time when I imagined I would be singing and dancing and prancing, I walked around like I was suffering from concussion. I cried. Even Mamma Jones drew a tear and that just plain freaked me out. I have made practical steps that somebody in my position might do, like plan a return to work, spend a few nights pretending I am 21 again and slept, but it did not sink in. I would not let it sink in until I received it in writing. Until I had the proof I needed to know that for however long I have, that I am in remission. There I said it. I am in remission. I don’t think I am in remission. I am. It’s not how I imagined it, nor did it come as quickly as I had wished, but it is here. I now have evidence that there is no evidence of myeloma, and that made my day yesterday.

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I am in remission. I might just say it again, because even with the proof, I still don’t quite believe it.

That damp, dirty shoe is going to fall at some point in my future, but for now I am going to exhale like I have never exhaled before and relish in this feeling that after 15 months of illness, sickness, treatment and limbo, I am free. Well, as free as I am ever going to be from this. And that fact makes me do something I had yet to experience and that is to cry rivers of joy. Joy and relief.

Those of us unfortunate enough to have myeloma know that the magic word of which I speak does not mean a reversal of fortune and a physical rewind to a pre myeloma life. Everything that poisoned my innards, has left a mark, and now the challenge is to learn to live with that. I still experience pain, I am still in recovery following the Big T and I am still required to attend the hospital and receive the fortnightly injection of Velcade. This is why we are intertwined. The story goes on, and hopefully, on and on and on.

In time, I will learn that this first all consuming 15 months were only part of my story. I have to learn to live with My Myeloma now, I have to properly enter the big wide world and discover my limitations and exceed its expectations, and I hope that I will continue to be surrounded by the people I love for the ride.

Right now, however, and I mean right now, at this instance, I can officially say that after so much, so much time, so much pain, so many needles, so many stem cells, so many drugs, that this chapter, this volume, this tomb, and whatever else I have called it, is over. It’s done. It’s closed.

The only thing left to say is, my name is Emma Jane Jones and I am in remission.

EJB x

To be continued… For sure.