Monthly Archives: May 2014

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.

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Regrowth V

Since I last provided an update on the subject, I can confirm that my head is still producing coils. Many, many coils. Several coils of brown hair. Said coils, continue to grow outwards instead of downwards. As I am talking about myself, I do not need to be polite, but if I was being polite, I would say that my current ‘do has ‘volume’. If I was not being polite, I would say that it is a bushy mess that is nice to touch. One might be mistaken for thinking I have a perm. People have mistaken what is going on on top of my head as a perm. It is no perm. It is all natural, if you can say that something caused by chemotherapy, is natural.

I am still adopting the hair growth policy of Leave It Be. It will fall out at some point again, so I might as well use this time to experiment for the next time. All I know is that these curls cannot be styled, they cannot be blow dried. All they want is conditioner and liberal amounts of oil.

The coily curls are like Marmite, you either love it or you hate it. People give unsolicited opinions about it. They do it over lunch, having a drink, on the 7s and on the street.

Wow.

It’s cool.

Perhaps you should go to a hairdressers.

Gosh it is curly.

Can I touch it?

You might need to trim the back.

Clearly, I prefer one type of comment over the other, but the world does not only smell of roses, just look at myeloma.

It needs no more introduction. Birds could live in it.

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After spending an afternoon honouring the late, great Harold Ramis, I think personally think my hair is reminiscent of this;

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I am yet to decide whether this is a good or bad thing.

EJB x

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The Vacation – In Pictures

I have had a week of being home and basking in the glory of being able to say I have been on my first holiday since 2011. I have returned to my Bermuda Triangle, which I think Wakefield can now consider to be the most northerly point. Maybe it is a Bermuda Parallelogram. I still fill like my week in shores not British, was the treat of treats for my eyes.

I have long said, embarrassingly so, that since my diagnosis I see beauty in most things that I have not seen before and even in some things I have, as my Instagram profile would testify. Being able to see six distinct places that I have not seen before nearly made my eyes explode with glee. I could not live in the moment. I wanted to record everything for the time in my future when I will once again be strapped to a bed longing to see something not contained within four walls. Negative maybe, but I feel like it would be nice to say when that time comes that “I did that once, maybe I could do it again.”

It is of course somewhat surprising that my velcade damaged hands managed to keep hold of my iPhone long enough to take over 300 photographs, but they did. It is because they did, that I am now able to share some of the highlights. Do not fear, there will not be 300, but there will be sunsets.

Venice

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Kotor

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Corfu

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Rome

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Corsica

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Sunsets

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And the rest

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Cilit Bang – User Survey Spring 2014

Today is a Friday and thus there is 50/50 chance of today being a Velcade Day. Velcade Day always promises to be eventful and by eventful, what I actually mean is a day that features waiting, a short sharp scratch or three and fatigue. The following fortnight between the next Velcade Day will feature fatigue, pins and needles, dead limbs and an attempt at living.

Today was a Velcade Day. I awoke with great enthusiasm at receiving what will now be my 51st injection of the magic bleach. Alas, that did not happen. My Velcade has been postponed due to an increase in the side effects from it, which as I have said before feels like I have rubbed my hands and fingers in fibreglass. Occasionally, it feels like I am shooting lighting bolts from my toes whilst something simultaneously attempts to remove my toe nails. More often, my limbs will go dead after a short period of rest. Since my last injection, I have also noticed an increase in me dropping things. I need little assistance in being clumsy. Last week, whilst reaching for some toilet roll for reasons that are obvious, I dropped the roll and recreated an advert for Andrex minus the Labrador puppy.

So, yes, no Velcade for me today. Instead, I get to wait a fortnight to see if things improve and the Medically Trained People will then decide what to do next. I suspect, I will continue on the disinfectant, but it will be more like a dose of Detol kitchen cleaner than the full Cilit Bang.

Recent events create a mass of questions in my head about the future and length of my remission. It is further complicated by the fact that I was told a fortnight ago that my treatment would come to an end in five more injections. The week before that I was told my treatment was indefinite and today I was told the same thing. In my life, I value consistency and people not getting my hopes up.

On the subject of consistency, as much as I appreciate everything the Medically Trained People do in the wonder of 60 Huntley Street, the timely administration of my Velcade is an annoyance. In the last 10 weeks, only one of the six appointments have gone ahead without some sort of glitch. The most popular cause of delay is due to the Pharmacy not making the big juice in advance of my arrival. The same thing happened today, it was then made by the people in white jackets, to then find out that I would not have it. Ever the cautious tax payer, I hope it now does not go to waste. Maybe that is their argument for not making it before I get there, but I am a busy woman. I do not want a two and a half hour appointment for something that can take thirty. I value my employment.

Right, I think that just about covers where we are with my treatment. But before you jump out of your socks, ecstatic that I will no longer get my Velcade fatigue on Sunday and Monday, I did still have the bone juice today. The bone juice, as much as they say it should not, has sent me to bed. And thus, the normal Velcade Day feeling resumes.

I have got that Friday feeling. I think it feels different to yours.

EJB x

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The Bookworm

πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“š

I find it difficult to concentrate; this is not new. My concentration level or lack of it, is not something that is within my control and I am never sure whether this is a fact that reassures me or not. It is the fault of the drugs. If in doubt always blame the drugs. Drugs R Bad. Since the first day I was given Oramorph, I have never looked back and to varying degrees, I have been zoning out ever since.

Not being able to concentrate is debilitating. I find it incredibly embarrassing. At it’s worst, at the start of my treatment and around my transplant, holding a conversation was a challenge and would usually be proceeded by a lengthy snooze. Films would not be watched unless I had seen them before and even if I had seen them before, they would have to be watched in batches. Even the season 3 finale of The Killing had to be viewed in four 15 minute sessions. Sarah Lund would not be pleased. It’s also the reason why I cannot follow Game of Thrones.

The present, with just 60mg of MST a day and the fortnightly injection of velcade, my concentration is the best it has been since somebody said myeloma. I have a memory and at least two days per week, I can follow a film I have not previously seen from start to finish, in one go. Unfortunately, I have limited control over what day this will fall on. Needless to say, this issue has led to me watching a lot of bad, formulaic television.

Books have been the real victim of My Myeloma. Forget the ebook, myeloma is the death to hardbacks. Upon hearing I was unwell, many people purchased books for me to read, to kill time. I even received two copies of Fifty Shades of Grey. I have not read them, which is probably for the best as myeloma has made me a sexual pariah and I do not need any additional stimulation. I have attempted many times to read a book. I open the front page, I read it. I might even read four pages, but then I have to read the pages again because I am unable to recall what I have read. It jumps all over the page as I think about what I am having for dinner and become infuriated that I cannot follow the plot, even in a Jilly Cooper novel.

I joined a book club and that died a death, though I believe the failure of that was not purely my fault. I tried audiobooks and I became enthralled by the Candy Crush Saga and stopped listening. At least I can now read articles in a magazine or the occasional newspaper. I can fully recommend the Guardian’s recipes and the film reviews in Sight and Sound read whilst in the bath.

As my concentration has improved, I have become certain that my ability to read something with a beginning, middle and end, will return. Let us be clear, I am no ignoramus, but I was not what one would have called a great reader before. I find reading all consuming, so I usually reserved reading to periods of annual leave when it would be acceptable to stay up until 4am promising myself that the chapter I was reading would be the last for the night. That said, I have a reasonable knowledge and book shelf. Last year, I was outraged when somebody had the audacity to tell me who Hanif Kureishi was. Fool.

I find the lack of an ability to read still, embarrassing and it ranks high in the things that suck about myeloma. It would make my journeys to Wakefield far more productive.

On my recent travels, I had long decided that I was going to read a book. I took four. As I said yesterday, I did suffer from the fatigue on holiday and it quickly became apparent that four was but a pipe dream. I am pleased to say that I did read one book. One whole book. I have been planning and hoping for this celebratory blog for a long time, so I will repeat the fact that I read one whole book. Sure, it was no War and Peace. It was not even a novel, but it had a beginning, a middle and a sleep, so I can say that I have read a whole book.

The book in question, The Old Man and the Sea was loaned to me an age ago as an ‘easy read’. At it’s 97 pages, it took until Day 5 to finish said book. I am sure I read the same pages again and again, but that is not the point. The point is, I read it. I am capable of reading a wholebook.

It may not sound like much, but to me, it is another example of how I am slowly, very slowly, rebuilding some sort of life. It is a gain.

I was told a few weeks ago that I am to join another book club. It’s a challenge that I almost have the confidence to endure.

πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“šπŸ“–πŸ“š

“Do you know who Hanef Kureishi is? He’s a writer.” Pwah. You have no idea how this comment annoyed me. I’m a culture vulture don’t you know.

EJB x

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The Vacation

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

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

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

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

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

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

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

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

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

EJB x

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

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Holiday Celebrate. Holiday Celebrate.

August 20th, T13, University College Hospital

“But we are going on holiday in November, she will still be able come on holiday won’t she?”

“No. No, she will not be well enough to go.”

βœˆοΈβš“οΈβ˜€οΈβœˆοΈβš“οΈβ˜€οΈβœˆοΈβš“οΈβ˜€οΈβœˆοΈβš“οΈ

When those words were spoken 21 months ago, I had absolutely no idea what they meant. I did not realise what not being well enough to go on holiday meant, nor did I have absolutely any idea how long I was going to have to wait to feel well enough to go on holiday. I most certainly had no idea how difficult I would find dealing with the fact that I could not go on holiday. I was definitely shipwrecked upon these fair shores.

We all know that myeloma is like a lifelong prison sentence; it is one big fat miscarriage of justice. For the last 21 months, I, unfortunately have been held in maximum security. Not a maximum security on the UK scale of prison decency, I am talking about American style, 23 hours a day lock down that would feature in a sensational Louis Theroux type-documentary about how barbaric imprisonment can be. That is how I have seen parts of My Myeloma life.

In my mind, nothing exemplifies the hardship that myeloma represents more than the inability for me to go on holiday. A desire that grew and grew after I was told that I could not do it and I grieved when it became evident that I was not physically capable of doing it and I would not be for a very long time. My freedom had been taken away. I was trapped in a triangle of the flat, Mamma Jones’ and the hospital and they were the only places I packed for.

In those dark times, when crying myself awake was a normal occurrence, I dreamed and I planned of so many holidays. I was promised some too. When there is no chance of one going away, one’s imagination really can be inventive. The idea of a holiday, to be more specific, going abroad on a holiday was my hope. My hope and my pain. It was a target and one that I could not help but set my sights on. It became a symbol of my health improving and thus if I discussed going away, my response would have been as emotional as if I had been talking about my potential recovery. Going away means freedom from my daily myeloma toil. It’s a break from it.

My last trip abroad was in June 2011 and the last time I travelled by air a volcano in Iceland decided to be a dick. Needless to say, my mind has been short on new discoveries of late; the East Coast Mainline and Tottenham Court Road, whilst special can become tiresome.

No more though. No more. I am at Gatwick Airport and my bags are nowhere to be seen (I like to think they are also on the plane I am sitting in). Any minute now, I will be forced to turn off my mobile phone, a small sacrifice to make for in a few hours I’ll be in Venice. After all those months lying in a bed, building up my energy and hoping, I am actually on a plane en route to a land that is not ours. I am on annual leave. Not special or sick leave, actual annual leave.

It has been so long coming.

You could say I am free. I would not, for I am not that cheesy.

I am going on holiday!

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And myeloma only cost me Β£154 extra for insurance. A bargain. I will tell you about all the other planning some other time. Right now, I am celebrating.

οΈβš“οΈβ˜€οΈβœˆοΈβš“οΈβ˜€οΈβœˆοΈβš“οΈβ˜€οΈβœˆοΈβš“οΈ

EJB x

P.S. Mamma Jones is pleased because she was just hanging out with Simon Callow in the club lounge. Swish. To be sure.

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Touch Wood

There are many days, and days which role into weeks, where the overriding thought in my large head, is about how much I hate myeloma. The level of hatred has two main determining factors, the first is pain and the second is fear. Pain is self explanatory, fear is not. My fear of myeloma is made up of so many parts, including fear for my future and fear of what obstacle myeloma is going to throw at me when I least expect it, thus disrupting my best laid plans. Myeloma has a habit of doing that, it pulls one down when they least expect it.

I hate myeloma this week for one reason and one reason only. I fear it will disrupt my plans. Not just any plans, the best plans. Next week, next Wednesday to be precise, I get to go on an actual holiday. There will be an airport, an aeroplane and holiday insurance. Ten days after my return, I get to go on another aeroplane, because I believe My Myeloma is letting his hair down.

For me, the act of a ‘holiday’ is far beyond the act of a holiday. I think that is all the best description I can muster for now, for musings about freedom, progress and life is not what this blog is about. This blog is about anxiety. I am so close to actually being able to go on a holiday that I do not, under any circumstances, want it to be taken away from me. As we all know, myeloma has a sneaky habit of zapping all the joy out of a situation, so my concern is legitimate. My counsellor suspects that this is the reason why I have been experiencing a number of anxiety dreams of late. The downside of which, is that for the last fortnight I have been in a permanent state of fatigue.

To mitigate the risk posed by myeloma, I have implemented an EJJ Preservation Project Plan, which for this means that between Monday and my departure date, I have allocated all my waking hours. It is a plan on top of my usual daily plan to exist in spite of myeloma. In reality, it means that I am without a social life this week and I can excuse my usual laziness. If I am not working, I am at home resting, not dusting. My energy expenditure this weekend is going to reduce so significantly, I may not get dressed. It’s not just me telling myself I have to do these things. By now, for those in the know, it is common sense. The more energy I use, the more likely I am to pick up a bug *please do not let me pick up a bug*. The more energy I use, the more likely I am to not be able to get out of bed next Wednesday morning and subsequently spend the rest of my holiday lying in a bed and missing what I assume, will be marvellous scenery. I contemplated living in a protective bubble, but that would not work well with my employment. I genuinely may avoid all forms of seafood between now and Wednesday, just in case it irritates my bowel. I definitely will not be licking a raw chicken breast. For this, I am taking no chances. That’s the myeloma payoff. Yesterday, I stopped myself from walking along a curb, just in case my body decided to fall over resulting in a fractured femur.

Everywhere and everything is dangerous to me this week. Vigilance is key.

Myeloma did this to me and I also hate that about myeloma. It has me always waiting for the other shoe to drop and kick me in the nose as it falls. That cannot happen this week. It will not happen. I have waited too long.

I will be going on holiday. I will be going on holiday. I will be going on holiday. Fingers crossed whilst touching wood.

EJB x

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