Category Archives: EJBones

It’s Supposed To Be A Marathon Not A Sprint

The month of August is the one month where I am guarenteed to feel nostalgic about my life pre and post My Myeloma. I might have such thoughts at other times of the year, but these usually occur when I am in some sort of drug and/of fear induced melancholy. August however, is different and this August has been more so.

August marks the anniversary of my diagnosis, my Cancerversary if you will. This year it was my five years Cancerversary. Not only do I get warm and bleak feelings about my once able body in the run up to my diagnosis. I am reminded of the stats. I am reminded of the stats I was told on the 21 August that I was then quickly told to forget about. ‘Survival rate is about 10 years, but this may be different for you because of your age’. I have had other stats thrown at me in the five years since, usually at the start of each treatment and with each treatment, My Body has come up wanting. 

There are several important dates in August; admittance to UCLH on the 14th,preliminary diagnosis on the 17th, formal diagnosis on 21st, kyphoplasty on the 24th and treatment commencing on 28th; each are packed full of memories.  This summer, I have found the memories on these dates amplified. Maybe it is something about five years and the fact that anniversaries are usually celebrated in fives. Maybe it is because I have felt my current treatment fail leading to the constant whirl of long forgotten stats and the big question that is , will I make it to the next big anniversary? Try as I might, I cannot forget about this. I even struggle to schedule a brain appointment for it, so I can lock it away again until the next scheduled appointment; my usual coping mechanism.

Every year since the cement was inserted into my L4, I have had to complete a survey about my health. What is that but a ticking clock counting down to… something? This year, the Medically Trained Person at the end of the phone said to me ‘don’t worry, next year is the last year we have to do this’. I responded, quite seriously with ‘good, that gives me something to aim towards. I hope I get to speak to you next year’. 

Some people may call these thoughts unhelpful and morbid, but I call them realistic. To me, not talking about my death, doesn’t make the chance of it less so. Avoiding such talk just makes me feel more isolated than my body is currently making me. I’m do not feel in anyway ready to kick that bucket, but I am realistic to the fact that in the five years I have had myeloma, I have had three failed transplants, multiple failed treatments and two, yes TWO failed trials. Yesterday, I was informed what my aching back had been telling me for weeks, that the Daratumamab trial had failed. I was taken off it immediately, and today I shall return to my home from home of UCLH, with the hope that they can pull something else out of the hat.

I think the fact that it was August has made me hypersensitive to any changes in my body, because those changes mirrored to some extent what I felt all the way back in the Summer of 2012. August 2017 is not the first time I have been made bedbound with a sore back. The difference now is that I know what is causing my sore back now, but I do not know the extent of the whys it if the damage is permanent. Nor is it the first time I have had high calcium, as I was told I had a fortnight ago. I was admitted to hospital in 2012 with high calcium. I have a constant sense of  dΓ©jΓ  vu, mostly concentrated in my belly of worry. The difference? I no longer have the naivety and hope I had at the end of August 2012 that carried me along for years. 

Today, I feel like my chances of survival are dwindling. 
Three weeks ago, I turned on my television to find what the BBC were billing as a second Super Saturday. I had tuned into the athletics and believe it or not, a sporting even where people are at the peak of their physical fitness reminds me that I am not. As strange as it sounds, I feel like my diagnosis and thus My Myeloma by default is intertwined with the recent history of the sport. 

During the first fortnight of August 2012, I, like most of the country was glued to the London 2012 Olympics. I was sick at this point, but I did not know why. I recall Mamma Jones telling me on Day 1 of the Olympics that I looked grey and weak. I didn’t believe her, all I knew then was that I had a never experienced pain in my back before and that my GP could not diagnose it. Whilst I was waiting for an answer, I was prescribed a pain medication that made me slur, which led to me being signed off work. Well, removed against my will  from the office. So, I got to spend a fortnight, unable to move from my sofa (it wasn’t a sofa then but a really uncomfortable futon not suitable for grown ups), watching the fittest of the fittest take each other on in a myriad of activities. My memories of this time are fond ones. The irony that I was so enthralled by a sporting event pitched as the ultimate sporting event, whilst I was physically deteriorating day by day, does not escape me. The sane feelings emerged during the Paralympics, only with these games, I had the added jealousy of hearing how these athletes had managed to overcome adversity to be there. 

By the time the next Olympics and Paralympics rolled round last year, I knew that I was once again hooked. Watching as many events as possible was akin to torture but a torture I had welcomed. The athletes wept and I wept. I wept because I felt their pain. I wept because I knew that I was long past the point of ever being able to run anywhere let alone complete  a marathon. I wept because I knew I could not jump over a hurdle and I wept because I would never being able to learn to ride a bicycle around the corner let alone a Velodrome. When the games ended, I wept because I feared that I would not be alive for the next games in 2020. A feeling based on my then trajectory and not depression.

And so, with this year’s World Athletic Chanpionships being held in London, I was engulfed with myeloma based emotions once again. They have statistics too. For all the trying and all the rules I imposed on myself, this month had me thinking about my stats.

 I cannot help to being a different person now to the person I was when I was diagnosed in 2012. 

As scary as all the stats were back then, like I said earlier, I was naive to what they meant or could mean. I thought and hoped that I was told to pay no attention because I was going to be the medical marvel who could withstand every drug thrown at me and survive. I thought remission was a distinct years plus possibility. I believed I had many days ahead of living in me.  Now, in 2017, I think the stats have been long thrown out of the window and the best I can hope for is to exist day by day and try to fit some living, when my body allows, in there too.

There are moments in time when I feel tremendous guilt in how, after just five years, I could end up here. Should I not be pre-paying for my funeral? Is getting a will a sign of giving up rather than an act of mere financial sense. I know my nearest and dearest loathe me talking about the possibility of my death, and now I fear that  these once in a blue mood chats, honest chats, have tipped my hand. I hope not, and if push came to shove, I believe not, and yet I still have moments when I feel guiltily that I may have jinxed myself. Perhaps this is how a favourite athlete feels when the bomb out in the semi finals… 

I know in regard to my treatment that I  done everything I was supposed to do. More open to discussion is how I have mentally got through the last five years, but with regularly counselling sessions and honesty, I personally believe that I have done everything in my power to not be in the medical position I am in today. I renewed my latest cinema memberships by direct debit, not for the financial benefits but because I wanted to commit to being a member next year. For all years. Last week, I spent far too much money on bedding and other soft furnishings, and I spent that amount of money because I want to believe that I will need said bedding for a long time to come. A fortnight before that, I invested in a limited edition backpack, not just because I liked it, but because I needed something of good quality for all my future visits to the hospital. I have more examples, but essentially, I do things to show I am not ready to die. 

My treatment has failed. Again. As of March, I had exhausted traditional myeloma treatments. That’s a lot to take in and let’s face it, these are odds never in my favour. That was a failed attempt to  shoehorn a film quote into my blog, the odds are not in my favour. 

I was supposed to have at least ten years; the marathon. Five years might not exactly be the 100 metre sprint, but it’s no marathon. I want the marathon.

Let’s see what is offered to me today. Who knows, I might be reinstated.

EJB x

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The (Almost) European VacationΒ 

If I have said it once, it is worth repeating, going on holiday when one has Myeloma is an expensive, administrative nightmare. 

My recent holiday, was booked before I relapsed. In it’s origins, it was meant to be a holiday of relief. Relief for me that I had made it through two stem cell transplants in 2015 and lived to tell the tale. Relief to my parents that they were able to use their annual leave for something that did not involve staying with me in two different hospitals and then caring for me when I was discharged. It was exciting and it gave us all something to look forward to. There was promise too,  promise that I would be healthy enough to enjoy it without threat, and promise that I would be in the position where I would be able to financially contribute towards my own holiday. I am a 32 year old adult after all. 

Two months after we booked said holiday, I relapsed, thus evaporating all that promise and relief we had when Mamma Jones made the booking. This left five months of frought waiting, full of what ifs, maybes and fear that for whatever reason, I would not be able to go. Underlying all of this was the very real question that if the worst did happen, the Β£250+ travel insurance policy I had taken out would be sufficient to get my parents their money back. 

As the five months went on, I found myself not simply needing a holiday because I had not been on one since 2014, but needing one because my life had become dominated by my treatment. I had had no time to come to terms with my diagnosis and my prognosis, and unknown fully to me, I had fallen into the   the worst period of My Myeloma journey thus far. That’s not hyperbole, I’ve been metaphorically stuck in a mental well for half of 2016. Five months of constant treatment, looming unemployment, living in the triangle of my flat, my parents’ house and my hospital, had become nothing if not mundane, uncertain and depressing. To put it very simply, I needed the break. An escape.

Remember that I mentioned the holiday being an administrative nightmare? Well, two weeks before departure, in response to a form I filled out declaring my disability, which I completed to make sure I had the necessary assistance whilst we were away, I was told that I had to get written medical approval before I would be allowed on the ship. Drama. That’s right, I was going cruising. AND, there was drama. In the end, after an anxious wait, it turned out to be a fairly straightforward process, but I ask you, how many 32 year olds would have to jump through so many hoops before being allowed to go on a holiday? 

Logistically, I had to make sure I had enough medication for the 12 night cruise, which creates much checking, double checking and a healthy supply of dosette boxes. Mamma Jones and I had to barter with each other over what would be reasonable activities for us to do ashore at each port. I am prone to thinking (wishing) that I can do more than I am physically able, like an eight hour day, and she is prone to being a super protective mummy, worried that her ill daughter is going to push herself too hard and collapse in a ball on a nicely tiled Mediterranean ground. The bartering took some time. I like to think I was the winner here.

The biggest pre holiday issue? Chemotherapy. From the start, I was adamant that I did not want to be on my chemotherapy medication when I was holiday. It took four months to get the answer I wanted, with various options touted along the way. Three days before we departed I was told that I was allowed to have two weeks off from the Ixazomib, Dexamethasone and Revlimid. Trust me when I say, this was a holiday in itself.  

Some may think that this was an unwise decision on my part, but I weighed it up. I didn’t have much else to think about, so overthinking is now pretty common. Any physical setback I experienced would be far outweighed by the mental strength I would gain from really being able to experience something new. I think I was right. My pain has increased significantly over the last three weeks, I don’t know if was because I delayed my treatment by a fortnight, a result of doing too much, something worse or any combination of the above; but I have been reminded what it feels like to live. 

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Ask yourself, have the expectations for one of your holidays ever been so great? 

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I do hate to harp on about my age yet again, but on a cruise, especially a P&O cruise in November, age is most definitely an important number. I acknowledge that cruises are not particularly cool nor are they fashionable holidays for somebody born in 1984. For somebody like me however, who misses seasons in a blink of an eye, who struggles to walk a few metres and carry her handbag, a cruise is the ideal holiday. The Ideal Holiday. I boarded at Southampton, unpacked once and I was taken to Gibraltar, Valencia, Cartegena, Tangier, Seville and Lisbon, before returning to Southampton, where Mamma Jones’ car was waiting for us. Excluding the pre holiday admistration, the doing part of the holiday was so easy. Evidentially, the ease of a cruise has a lot to do with the demographic of the ship’s holiday makers. This has nothing to do with me, but on one relaxed sea day, Mamma Jones’s foot was the victim of a mobility scooter drive by in which the perpetrator not only failed to stop at the scene of the accident, but was completely oblivious to it. The perpetrator then proceeded to bring down a clothing rail in her wake.

There was just one not so small snag… One lingering question that I could not get out of my head that constantly threatened turning our holiday into something bittersweet. Would this holiday be my last holiday? Every time I thought about it, and I would catch myself doing it multiple times a day, I had to swallow quickly and push that morbid thought as far away from my mind as possible. I could feel how much fun I was having and then see how much fun Mamma Jones was having, and I could not help but think, would the two of us ever enjoy something like this together again? Would I ever be able to go on holiday with my sister again? And each time, like just now, I had to swallow quite ferociously and not speak, because the thought of my Mum having to find a new travel buddy or my family going somewhere without me breaks my metaphorical heart just a little bit. 

I might have cancer, I definitely have one with no cure and an unknown prognosis, but that is not the only issue when it comes to the prospect of my future holidays. Some life might grow on trees, but money does not and future holidays accompanied by astronomical travel insurance premiums do not come for free, even if I do feel like I deserve it.

As horrible as all of that is to consider, it spurred me on to have the best darn time possible on the ship I decided to call, the Floating Coccoon. 

My body knew what it had to do and boy oh boy, my body did not fail me. Gone were the much needed lie ins and the penchant for afternoon naps. There were concessions sure, I was in bed by 10pm every night at the very latest, and by 7pm of every day I struggled to sit in a seat because I had failed to lie down enough during the day. I was back to sleeping on six pillows. I am still on 6 pillows. There was just one evening where I stayed in with exhaustion, getting into my pjs at 6pm. These are groundbreaking statistics for me. 

It really is like my body knew, for on the last night of our holiday, after one almighty click in my neck, I could no longer walk with my walking stick because I did not have the upper body strength to hold. I have been suffering since. It’s a small, somewhat painful concession that was completely worth it.
I could go on and on and on, but I think you now have the idea. I enjoyed myself.

In the 12 days we were away, I witnessed 12 spectacular sunrises, 12 sunsets, one mega moon, two rainbows, violent seas, six different ports in three different countries and history. So, so much history. And colour. New colours everywhere for my eyes to feast on. My NOW TV box does not begin to compare.  For 12 days, my eyes were spoilt. For 12 days, my Instagram feed contained images that were not of dogs. For 12 days, I allowed myself the occasional alcoholic beverage and I ran the germ infested gauntlet that is a hydro pool. For 12 days, I felt free from my shackles. 

To my beloved Mamma Jones and Haemo Dad, thank you. 


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EJB x

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18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

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Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

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In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

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Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

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For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

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Just Giving

Charities are great. 

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Personally, or should that read, ‘selfishly’, I am particularly fond of the cancer ones. Macmillan, Cancer Research, Myeloma UK and the rebooted Bloodwise (once known as Leukaemia and Lymphoma Research), have all contributed in some way to my treatment and all round, general well-being. You should all love them and donate your disposable income to them for that reason alone. I am, however, pretty sure that as special as I think I am, I am not an isolated case when it comes to the positive impact these charities can have. I  regularly find myself torn as to which one deserves the most EJ love… Bring  other charities into the giving equation and I am stumped.

A charity, by definition is an organisation designed to help and raise money for those in need. Walk down any high street, sit on any mode of public transport, watch television the old fashioned way or simply look at any type of social media, and you will see that there are a lot of people out there in need. A lot of people. I don’t want to shock you, but there are many bad things in this world. ‘Bad Things’ is the official term, I have spent weeks work shopping, to cover all the horrific, life changing and slightly irritating things that could ever possibly happen to a living thing. 

If all the shopping centres, buses,  adverts featuring music by Kate Bush and a phone number, door knockers and status updates are true, there exists a charity for almost all the Bad Things that can and do happen everyday. Illness, death, poverty, war, famine, the environment, dogs, cats, dogs and cats. 

The list is endless and can appear, relentless or at the very least, saturated.

It’s a common scene, when a person cannot make it down a street without being pestered by a person donning a brightly coloured anorak and a fake smile, rattling a money box or dangly a clipboard in your face. As it is now a mere 80 days until Christmas, we are in peak charity (over)drive. It’s the blitz. Everybody, everything, even those dogs and cats, need more money.

On the other hand in my pocket, the fact that so many charities do exist, is moving. It is reassuring to know that there are many people in this fair land, unlike me, who care about other beings enough to invest their  time and money to the betterment of others. The Bad Things are being tackled by Good Things. I tried to find out how many charities there are in the UK, and I stopped when I read there were over 16,000. 16,000? Many, many Bad Things. This is an aside, but I  was surprised to learn that cancer charities only accounted for two of the top ten highest earning charities in the UK.

I have reasoned, whilst starting this new paragraph, that it is not as simple as Good (the charities) verses Bad (the bad things). Charities must have to compete with each other. If charity really goes begin at home people, then how on earth do people decide which individual charities to donate their hard earned, and limited cash to? Maybe people don’t think, and they donate as and when they feel backed into a corner; I know that is what I used to do.

It’s not just a question of cash either, charities need investment in time, knowledge and understanding. It could be a result of my constant drugged out haze, but I cannot begin to fathom how charities find a voice loud enough to be able to endure, when there are so many charities to choose from, who are equally and unequally vying for your attention. 

My charitable attention is selfishly directed to illness, and a certain illness at that. I would think you a fool if you could not deduce the illness of which I speak. I do not know how able bodied and able minded people decide. In my pre cancer world, I would donate out of guilt, empathy, a good advertising campaign, office related sponsorship or various combinations of the above.  With 16,00 charities in the UK alone, it makes for an extremely competitive in the Third Sector. Sorry, I meant cutthroat. 

In the last few years, maybe because I am more sensitive to campaigns, I have seen charities become more inventive when it comes to fundraising. The Ice Bucket challenge, Coffee mornings, make up free selfies, awareness days, Movember, girls’ nights in; it seems charities have to think outside of the box to garner attention and take in the big bucks. Charities are a business and just as in business, despite the noble origins, it appears to me, a dog-eat-dog world. 

Last year, when people were scrambling to poor ice over their heads for ALS, I remember reading various comments online that said it was unfair that the charity was getting so much attention and money, when there were so many other, needier charities to donate to. To clarify, I am paraphrasing other people’s thoughts and these are not my own (Mamma Jones asked me to do that, in case people misconstrue my intentions). Anyway, at the time, when I read these commentaries, I did not see why it had to be an ‘either/or’ situation. Those comments felt like cause shaming, or playground antics, squabbling over what is the worst (and thus the best) ailment.

Yesterday, I saw an example of this (at least that is how my sensitive soul read it) on the book they call Face. I read a status update, the kind of copy and paste job that people are challenged to post in the hope that it goes viral. The cause may be worthy, but I deemed the technique they used to spread their message as insensitive, flawed and ignorant. The update read:

October is Infant/Pregnancy Loss and SIDS awareness month! Let’s take some time to remember….[I have edited the middle]… Make this your status if you or somebody you know has lost a baby. The majority of you won’t do it, because unlike cancer, baby loss is still a taboo subject. Break the silence. In memory of all lost.’

Unlike cancer

Call me opinionated, but I think it is unacceptable to pit one horrific and life changing thing against another, wholly unconnected, horrific and life changing thing in order to gain awareness. I cannot begin to comprehend what it is like for a person to lose their baby. It is indeed something in need of discussion and awareness, especially when it comes to how the NHS cares for the parents who have had to endure such a loss. But, whoever originated the above campaign, in my mind at least, lost their credibility, the moment they typed ‘cancer’. The two are not comparable. End of discussion.*

Do people perceive cancer to hog too much of the public sympathy, and thus too much of the limelight? Cancer may well recieve more publicity and support in comparison to other ‘Bad Things’, but it does not mean it is incorrect to publicise or care about it. Cancer charities only accounted for two of the ten highest earning charities in the UK last year, and yet I understand that it can at times, seem like it is prioritised or sits on an indescribable pedestal. But, I wake up everyday and think ‘cancer’, so I am biased. A friend once argued with me because they believed cancer gained more sympathy than mental illness. It’s the sort of attitude that creates some sort of artificial hierarchy, where there does not need to be one. Nay, there should not be one. 

Causes should be judged on their own and stand alone. Charity should be about giving not chastising, and yet the latter will always exist. Of course, we cannot individually give to all charities, but they should be able to exist side by side… Charities are about helping people after all.

And so, in the run up to the festive season when you can see nothing but a rainbow of coloured anoraks and you are bombarded with donation requests, please don’t get angry. The answer is easy, just give to who you want to give to and say ‘no’ to the others. It’s simple maths. 

πŸ’°πŸ’ΈπŸ’³

As for the statement that cancer is no longer a ‘taboo’ subject; that is another, lengthy, blog entirely…. Until then, I will simply say that my personal experience would contradict this. Strongly contradict it.

EJB x

P.S. This is not foray into the complex world of giving, I was opinionated in 2013 too. https://ejbones.wordpress.com/2013/03/19/the-charity-drives/

* I am aware of the irony that, that was not the end of my discussion.

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It’s Time

How does one spend their last 30 minutes of comfort in their flat before walking out and starting what is going to be one hell of a double stem cell transplant of an ordeal? Writing a self indulgent blog of course and eating a bowl of multi grain porridge. I can multi task. 

And so, after months and months and quadruple that of treatment and mental preparation, I am finally here, at the point of no return. Well, unless I get there and they decide I have a bug, but I am not really thinking about that. Unless typing it is thinking about it, but I only have 28 minutes, so it is best to not delve any deeper into my paranoid fear.

I do not feel ready to leave my warm and cosy flat, but I never really anticipated to. I am ready for things to progress, as horrible as that progression is going to be. The last week, in particular had been quite difficult. Yesterday, I could no stand the warm and heartfelt reminders that it was my last day of freedom, that were coming through my phone, so I turned it off. I didn’t actually turn it off, I just switched it to aeroplane mode so I could still play games.

Filling up my good cylinder in readiness for today has been a task. A fun task, but also one fraught with emotion as I fought fatigue and melancholy. A lot of melancholy. Until last Monday, my social activity had destracted me so much, that I had almost forgotten that April Fool’s was looming.

I will not least everything I have done this past month, for it may sound churlish. It’s included the theatre, the seaside, food, film and Harry Potter. All rather grand and highly medicinal. Last night, at my request, I stayed in, made roast chicken with rice and sweetcorn and watched ‘batteries not included’. That’s not a grammatical error, that’s how they write it. I know I will not be able to do all that for a long wee while and that is where my melancholy takes hold, but I must be strong. I have to be strong when I know that it’ll be a while before I see this in the morning time again;

  

But that is my life and I have to be a grown up about that don’t I?

I now have 11 minutes, so I should probably wrap this up because I expect I am going to need all my energy and focus to stop me from crying in front of Housemate.

I’ll see you in a bit. In the meantime, why don’t you look at some fun?

   

         

BRING IT ON.

EJB x

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Cover Girl

Many moons ago I thought the only chance of me ever being a cover girl, would be if I won a regional competition for being the prettiest larger lady and my prize would be to don the cover of a mail order catalogue for affordable plus sized clothing. Little did I know that at the tender age of 30, I would end up on the cover of the edgiest quarterly publication out there. If you are not familiar with the latest pop up restaurant, think a beard worn with tartan is the epitome of cool and your favourite day of the year is Black Friday, you probably have never heard of Myeloma Matters, let alone know where you can find yourself a copy. The charity Myeloma UK is a good starting point in case you were interested.

Myeloma Matters tells you everything you need to know about myeloma. Essentially, it tells you what matters and it tells you every quarter. This quarter, what matters is my patient experience.

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Regarding my patient experience, I put the bass in my walk and metaphorically, let my whole body talk to the original tune of 2888 words. My word limit was 1200-1500. It turned out that I have a lot to say about what has happened to me since I was diagnosed. I have so much to say in fact, that two months after I finished writing ‘my experience’, I still want to add things to it. I want to go into more detail about how lonely myeloma can make me feel. I also want to talk about important it is for me to have people around me that understand my mood swings and how difficult it has been for me to understand that my Support Network do not always understand that. If I did that, Lord knows how much would have had to have been edited out by the kind people at Myeloma UK; they had their work cut out for them as it was.

So, if you want to know what this blog could sound like with the benefit of editing, please visit http://www.myeloma.org.uk/information/myeloma-matters/.

This is a useful exercise if you need a refresher in all things Bones. Some people get a degree in two and a bit years, I have experienced something else entirely.

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If you really wanted to indulge me, you could read the original, unedited version, which I have kindly added to the bottom of this blog. It will come as no surprise to many of you, that I prefer the longer version. I imagine you’ll prefer the shorter one for the reasons most obvious.

I thank Myeloma UK for giving me the opportunity to exhibit. I definitely gave them face.

EJB x

Once upon a time, I like to think that I was a rather typical, if overweight, 28 year old single lady living and working in London. I say ‘typical’, my life was what I wanted it to be, featuring lovely friends, a loving family, a job I enjoyed and an active social life. I enjoyed these moments, my moments and my experiences, and I never considered that I should have been doing something more constructive with my time, because I was 28. I had loads of time to experience the many things society associates with true adulthood. Babies, promotions, becoming a homeowner and starting my own family were to be my future, at some undisclosed point in time.

Instead, in the June of 2012, I got a sore shoulder…

At least, the GP told me that the pain was coming from my shoulder; the reality, as you can guess, was quite different. My first visit to my GP on 20 June came about because I thought I had a chest infection. I self diagnosed it as a chest infection because there was a pain in my torso unlike anything I had ever experienced that hurt whenever I coughed, talked or breathed. The fact that I went to the doctors in the first place, is a testament to the pain that I was in. I was very much not a doctor person. Fortunately, I am now very much a doctor person , or Medically Trained Person person, I’d be in dire straits if I was not.

To say during this appointment that the GP was dismissive of my pain would be an understatement. In short, avoiding the points I would later complain about, I was told that I had torn my rotator cuff and that by the time a referral had been made to see a physiotherapist, the pain would be gone and I would be better off looking up exercises on YouTube. As for pain management? Paracetamol. Just Paracetamol. Of course, the pain did not go away. Over the following month, the pain got considerably worse, and it was not until 30 July that I worked up the courage to not be discouraged and visit the GP again. It was a more productive visit and I was sent for a blood test and a chest X-ray. For some unknown reason, out of the four hospitals I could choose from to have my tests, I chose to have my tests done at University College Hospital. It was a small decision, that I have congratulated myself for making nearly everyday since.

My next GP appointment was on 14 August, and in the short amount of time between appointments, the deterioration of my body was something to behold. I could barely walk. I somewhat ironically spent all of London 2012 on my back; some legacy. Having never experienced ‘back pain’ before, I thought the sharp shooting pain from my lower back that made my legs give way on the middle of Shaftesbury Avenue to be a normal symptom of ‘back pain’. During my appointment, the GP told me that there was an anomaly in my bloods and I should go home until she had spoken to a specialist at the hospital. Twenty minutes after getting home I received a call telling me to go to A&E, where I would likely be admitted because my calcium was too high. The doctor told me that I must have felt very unwell. My response was, and still is, what is unwell, what does it look like? I felt tired, sure and felt like I had the flu, but I just assumed that this was normal when one lived a lifestyle where the candle burned at both ends.

Three days later, having been poked and prodded and had my first adult experience of a hospital, I was told that I had multiple myeloma. In that one moment, everything changed. My life changed. Out went the parties and being awake for more than 12 hours at a time, and in came blood tests, a new vocabulary, scans, medication and Cancer. Not the sort of cancer with tumours, treatments and cures that everybody understands, a blood cancer that nearly nobody understands unless it effects them and thus requires constant educating of the misunderstandings.

Of course, at the time, I did not know by how much my life had changed with the words ‘multiple myeloma’, nor could I truly understand what myeloma meant for me. I say me, because if there is one thing I know for certain, it is that myeloma is different for each person unfortunate enough to have it. The disease may follow a similar and predictable pattern (and it may not – hello, I am 30), but how I feel about that and how I manage that is unique to me, just as it is unique to everybody else who has it and nobody can tell me otherwise.

I get through each day by believing that my myeloma is my own. It’s my mantra, quickly followed by the ‘myeloma does not define me’. When you are 30, have a cancer with only a very slight chance of a cure that has all but postponed the life plan, with that horrible statistic of 10 years hanging over your head, making sure it does not define you, is a mean feat. Myeloma is a part of me, it would be unrealistic to think that it does not impact on my waking day, but it does not define my personality despite the limitations it puts upon it. I can be selfish at times, but my way is the right way for me. There have been many times when people have told me how I should be feeling, what I should not be feeling and what I should be doing, and the truth is, only I have the choice to decide how I feel and what I should do. Most of the time I am winging it, and occasionally, I need need people to tell me it is okay to feel unwell and that I need rest, because I do have a tendency to fight the fatigue.

I need support, sure. I need and have ton of it to get me out of bed everyday, but I need support and understanding, not support in the guise of somebody pointing out the error of my ways and telling me how they would manage a life changing diagnosis better than I do.

Let’s not beat around the bush here, myeloma is life changing. I’m not being melodramatic.

In the 26 months I have known what myeloma is, I have been through three rounds of treatment (PADIMAC, VDT and Revlimid), had a autograft stem cell transplant, experienced the ecstasy and agony of remission and I have relapsed. That is just the cancer treatment. My initial treatment started 11 days after I was diagnosed, and lasted for six cycles, by the end of which my paraprotein level had plateaued at 16 from a starting point of 36. By the time my stem cells had been harvested, my paraprotein had crept back up to 26 and in March 2013 instead of having my stem cell transplant, I was starting another round of treatment. That setback was the hardest thing I have ever had to manage, it taught me so much about the unpredictability of the disease. I eventually had my transplant in July 2013 and with that came 11 months worth of remission. By the time the transplant was over, I felt like a seasoned veteran. In fact, I am a seasoned veteran. I know most the side effects, I can predict them, I understand the limbo and I can give one hell of a medical history on one of the five occasions since 14 August 2012 that I have had to go to A&E.

All that treatment coincided with the treatment for my pain and the damage myeloma had caused to my bones. The majority of my lesions are in my spine, which has meant that in addition to learning first hand the effects of chemotherapy, I had to adapt many of the daily tasks I used to take for granted. In my mind, I have to separate the treatment for the cancer and the treatment for the bone disease, because I see them as two very different things. One makes me very tired, reduces my ability to concentrate and made me lose my hair. The other has made me a disabled 30 year old who can no longer go on roller coasters, struggles to pick up her bath mat and is afraid of public transport. The pain I experienced on Shaftsbury Avenue was me fracturing my L4; this was discovered with my first MRI scan. Four days later I was transferred to the National Hospital of Neurology and Neuroscience for a Kyphoplasty. In that October I had a single dose of radiotherapy on my right hip, and this August, following my relapse, I had five sessions on my L1-L5.

Shortly after my diagnosis a doctor told me that my pain was going to be chronic, something that I strongly fought against, but something that I now see to be true. It is chronic! I am given treatment and drugs to ease said pain but save for a miracle, and I do not believe in those, the damage will never be completely reversible. It took me a long time to admit that to myself. I may now understand pain management, the stupid scale from 1-10 and maintain a strong aversion to Oramorph, but I know that I will always have a minimum daily pain threshold and I will always struggle to look at my blind spot. I am disabled. I call it the ‘invisible disability’, because when I am in public people do not see brittle bones, sore bones and neck spasms. If they see anything, and that is a big if, they see a young, obese person with a walking stick.

I imagined remission to be something it was not. For all the months before my transplant I imagined remission to be the end of the twilight my diagnosis had put me in. Getting there was my focus. I thought remission would be a return my old life, or a return to the ‘new normal’, that factored in my walking stick and fortnightly Velcade injections. Remission was not like that. My remission, at first at least, showed me everything I had lost with myeloma and it was only with my remission, when I stopped working towards it, did I actually come to terms with the grief and loss that my diagnosis caused.

I cannot sugarcoat it, myeloma is a terrible disease. I am 30 years old and it has taken many of the things I loved about my life away from me. I acknowledge that I absolutely and completely hate myeloma for what it has done to me, my family and to my friends.

Myeloma is a constant state of limbo, metaphorically looking over your shoulder (because I cannot actually look over my shoulder) willing for the good to come, whilst being constantly being weary of the bad.

The truth is, it took me a long time to be able to properly admit to myself that having myeloma was a negative. I became so wrapped up in telling people that I was ‘fine’, that I did not see that it was okay to admit I was not. That is a big sentence and one that I am not ashamed of.

I now have several rules that I have to adhere to that keep me strong and that keep me smiling, and most importantly keep me sane. I always confront the negative thoughts. I might not confront them in public, but if I am having a bad day, and I feel sorry for myself because I am hot flushing so much because my transplant drove me to an early menopause, or I am upset because the law says I have to be reminded that I cannot have my own children by having to do a pregnancy test every month so I can be prescribed my Revlimid, or that some ‘friends’ have gotten bored with my myeloma and no longer wish to see me or I start to worry about whether I will be able to continue in my employment, I confront it. I have to let these thoughts enter my brain, in order for me to move on. I throw them away until the next time they appear and there will always be a next time. When I have taken so many steroids that I cannot get out of bed for three days, or when I am in so much pain that my sleep is broken when I attempt to turn, pretending it does not happen upsets me, it makes me feel more upset. I tried putting on a fake smile, but it was exhausting. In order for that smile to be genuine, I have to admit that sometimes, myeloma is a big pile of rotting rubbish. My blog has been an amazing outlet for that, it allows me to throw out the trash as well as keep people informed of my progress. The benefit of the latter point is that it reduces the number of times I have to do the Cancer Roadshow…

In addition, even if I have no intention of leaving my flat, I make sure I get dressed everyday. There can also be no duvet in the day, a blanket on the bed is fine, but no duvet. I set myself mini tasks to make sure that my brain does not turn to a drug induced mush. When I am not working, making sure that my brain is actively engaged is crucial, especially because my medication is no friend of my concentration span. One of the hardest things I have had to learn is to allow people to help me. I was not built in to cry on somebody’s shoulder or to ask somebody to cut my toenails. I have to do that now. Luckily for me, bar the odd person who has fallen by the wayside because the disease is never ending, I have a wonderful support network around me. My family is unstoppable in their support and my London family, my friends, are always around to help me and have adapted how they socialise with me, so that I can socialise. I am a strong advocate of the power of counselling too, as much as my friends and family support me, it is absolutely imperative that I have somebody I can say things too who is independent from my life. The next point I stole on the day I was diagnosed, but it is one that I hold close, and that is, do not believe the stats for the stats said I would not get the disease in the first place.

I can go on, and on about the things I do to hold my head high. I am acutely aware that much of what I have written here appears negative, but I do not see myself as negative, I see myself as anything but negative. I pride myself on how I manage My Myeloma. I see myself as strong and, despite my numerous setbacks, I am still willing to get up everyday and battle with my constant companion, Myeloma.

I said that my myeloma does not define me, but it has made me a better, more rounded and more loving person, if, unsympathetic to those suffering from the common cold, and I think, right now, as I wait for my paraprotein to fall low enough to have an allograft, that really, is all I can ask for.

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A Little Less Superstition

I have known all about the statistics of myeloma ever since somebody first removed a piece of bone from my body. They are statistics that I thought I had come to terms with and understood. As with everything else I can interpret as ‘bad’, I acknowledge it, and move on and then when I need to acknowledge it again, I do so and move on and that is how it goes. The issue at the moment is that I do not have a great deal to move on to. Myeloma wise, I am on a one way trip to an allograft stem cell transplant and this, my dear friends, I find absolutely terrifying.

I can pretend to not be scared by the 40 percent mortality rate and the various complications that can come with the procedure, but that pretence does me no favours whatsoever. I know this, because I spent much of the last fortnight of October bursting into tears as I spontaneously contemplated my own mortality, pretending that I was not worried by it. I believe I confused admitting that I have these thoughts were in someway admitting that I was not brave, which of course is not true. I am the bravest. I did attempt to talk about my fears, but it does really help members of my Support Network to think of my early demise either. The stock response tends to contain the words, ‘silly’ and ‘fine’ and then the conversation is shut down. I cannot shut down my own fears that statistically, it is far more likely that this could be my last Christmas than it would be for anybody else I know.

I have not lost complete control of my senses. Chill. It would be wrong to say that the forthcoming, on a date to be confirmed at some undisclosed time in my future, transplant occupies all my thoughts, but it is never far from my mind. It would also be wrong to say that I view the transplant as a negative experience, for I do not see it as such. Indeed, thinking of failure before the deed is done, could be seen as a jinx, if I was that way inclined. And to confirm;

I am that way inclined.

I did not know it, but my fear and the management of that fear, which I am told is completely normal, has manifested itself in superstition. Not just any old superstition, but overt, occasionally ridiculously, but almost always laughable and definitely without any scientific merit, superstition. Stevie Wonder might say that this ain’t the way, but what does he know? I am pretty sure that I am just being pragmatic and ensuring that I have covered all the necessary bases.

It’s just like taking my drugs…

It all started innocently enough. A few months ago, I was asked to consider doing something that I thought that if I were to agree to it, I would be saying that my treatment would fail and that, in a nutshell, I would die. If I wasn’t signing to confirm my early death, at a minimum, I was committing myself to a lifetime of complications much worse than those I experience now. The word ‘jinx’ was bandied around. A lot.

Since then, these thoughts have developed into something I could not have foreseen. I now see many things as potential omens. It is a logic that led me to purchasing a pair of shoes on my credit card, because they were too much of an investment for pre-transplant wear alone and my morals say that I need to be around long enough to pay of the debt. So you see? It was fine for me to visit the Russell and Bromley website. With that sort of mentality, I could really screw things up for myself.

It goes on…

This Christmas is nothing special. It’s just the same as another other Christmas. To say anything else would be, punch me in the face, pinch my nipple, condemning me to failure, sacrilege. In fact, I decided last week that it has to be called Just Another Christmas. No muss, no fuss. The only issue is, I am yet to decide whether this means I fight my Brother-in-Law for a Christmas dinner, because that is what I would normally do. Or, do I let him and Big Sister decide on how we spend Boxing Day, because I’ll of course, get to decide next year and for several years after . Just Another Christmas, remember? On the scale of jinxing, I’m not sure which route is the best one to take? It makes me feel quite uneasy.

I recently started keeping a log of all the films I see in a little notepad. The record started because I could not remember seeing a film I saw a year ago, but when I saw the size of the book, I realised that my transplant would have to be a success, because I had to be given the opportunity to fill the whole notebook. It’s a lovely little Moleskin in red by the way. For the first week or two, I felt quite confident about my new task. It was a confidence that started to fall away when I realised that there was a chance that I could fill the book before my transplant, and then, instead of it being a good omen, it became a bad one. I started the book on 9 October, and to date, I have seen 36 films I have not seen before. I am just under halfway through the book because I made the foolish decision to devote two pages per film. Foolish oversight.

A few nights ago, I found myself lying in bed fretting over what I had brought upon my house and I realised that I needed to introduce a contingency plan. Basically, I need safeguard after safeguard to ensure that everything goes to plan. Makes total sense right?

I decided that what I needed was a list of films to see that I had never seen before, or, as I am calling it, ‘Films to See in Life’. Notice my language here, there is an alternative name that would roll far more easily off the tongue, but my superstition will not allow it. I stayed awake, deep into the night compiling the list of Films to See in Life. As the list has been formalised in a word processing app, it means that I now have to complete it and I am fairly certain that it will take longer than two years to do so, for my list criteria does not include forthcoming cinema releases or random things I come across on one of the three streaming services found in my flat. The added beauty, inner beauty if you will, of the list is that I can always add to it, thus creating an inbuilt contingency should I find myself able to watch multiple serious films back to back, for days on end. I should add here that this scenario is highly unlikely given my current and future medication. If you do not believe me, try and follow the plot of Robert Altman’s Nashville after you have been awake for 24 hours and you are suffering from a hangover and then you’ll sort of understand what it is like to be on the Revlimid, Dexamethasone, Cyclophosphamide, MST and Diazapam cocktail.

I was once somebody whose beliefs were very much grounded in reality, but fear does funny things to a person. At least to me anyway. You all know that now and you can be mindful of it. Housemate is on board too for yesterday he bought me an early Christmas present (I actually think it was a late 30th birthday present) in the form of a Moleskin 240 page Film Journal for us once my little red book is full. Guess what?

I think it bodes well…

In case you were wondering whether this makes me mentally unstable, mind your own business. Sure, as an aside, I was slightly worried about it as a long term management tool, but I have been told that it is completely normal behaviour when one is in quite extraordinary circumstances that they have absolutely no control over.

Just do not tell me that everything will be ‘fine’. Make it ‘fine’.

EJB x

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Woe is Me

And so my thirtieth birthday has passed by, and with the beauty of hindsight, I can tell you that it really was not that bad. It is important for me to keep you updated on the fact that I had a whole week of feeling special and loved, because my last blog on the subject was rather negative. Also, everybody just loves a boaster. I am a boaster.

After I expressed my distaste for my birthday and said how it reminded me that I was going to die and miss out on a future, I received a comment on my blog telling me that I should stop with the ‘woe is me’ comments.That was not the opening comment, oh no, I was profoundly told that my life is what I choose it to be and in order to fight myeloma, I had to ‘start with a decision to do something’. The gifts just kept on coming, and I was advised to not feel sorry for myself, and to achieve this, I should live my life by being active. By ‘active’, the suggestion was that I could ‘walk, run or bike’. It concluded, inspiring creators of memes everywhere, by saying a ‘death sentence’ means that I have time to ‘live before X day’. And so, I was ordered to ‘live it’. Exclamation mark.

Inspired, enlightened and motivated by the kind guidance a lesser person would consider a sales pitch, I decided to avoid my blog for a few weeks to allow myself the chance to ‘live’. I mean really live. I have after all, spent every day of the last two years in a self indulgent, wallowing pit of despair, not affording myself the opportunity to really live. The advice, both insightful and medically responsible, came with a slogan of ‘Nutrition + Fitness = Health’. POW and WOW.

I acknowledge that my last blog about turning 30, was not something one would read to a four year old as a bedtime story. It was angry and pessimistic. It was also needed. They were the thoughts I had in the lead up to my birthday, and I needed to voice them by writing them down and then dumping them into the internet ether. It is how I manage all my negative thoughts and it then allows me to see the positive. After I pressed publish on the morning of the 24 May, do you know how many other times I have entertained thoughts about my premature death and never born children? Not once. Not at all. Not even. Those thoughts are hopefully not to be seen again until the 17 May 2015. With the thoughts banished, I was able to just enjoy the things I used to love about my birthday. Enjoy it I did, and it lasted for 9 whole days.

‘Living’ is grand. I spent the afternoon of 24th May until the afternoon of 27th in Berlin. There, in lands all so foreign, I was able to do my best impression of a middle aged American tourist whilst the people I travelled with did their best impression of something else entirely. My eyes, once again, were able to see things they have never seen before. I relish that, more than jogging. As much as my innate pessimism loathes me to say it, I had fun. Boy, did I walk straight into ‘living’.

Inevitably, in the immediate days after my return, I required rest. I rested because I felt sorry for myself and not because it is an essential part of my ability to function. I was tempted to go on a bike ride, but I have been limited to four five minutes walks a day by the people who are medically trained, so I chose sleep instead. The rest days also involved some working, because I am hell bent on giving up and I only need money to fund my Netflix account.

Sandwiched in between the birthday fun times, was a doctor’s appointment and a dose of Velcade. Velcade as you all know, has such positive side effects, that any one intent on giving up on life, will benefit from intense neuropathy, fatigue and nausea. I do not go every other Friday to have a dose of Velcade and feel this way, because it will buy more more time until X day.

In the days after my rest time, I was treated to a myriad of gifts and fun and love. I had a good turn out for my birthday drinks, which was probably just the way in which my friends decided to tell me that I needed to ‘live’ more. I felt spoilt and put it simply, I loved it because I love me. There is nothing better at making one feel wanted in the world, than positive attention. Lots and lots of positive attention. πŸ’–πŸ’–

It has been two weeks since I said goodbye to my birthday for another year, and in the time since then, I have once again fallen into the pit of self pity that is my myeloma consumed life. My self pity looks like me working, the occasional act of socialising, a Q&A at the BFI and Mum Love. I have been incredibly hard on myself.

To be clear, there is absolutely no way in which I feel like I have not been ‘living’ or trying to live, nor do I feel like there is any decision for me to make. I will say this once, I am incredibly proud of the way in which I have conducted myself since I was diagnosed. I have managed every change, every hurdle, every bunch of fives, in a way that works for me and I hold my head up high as a result. The hurdles, by the way, includes when it has become apparent that I can no longer ‘live’ like I used to. Occasionally, I will have a bad day, or if last autumn is an example, a bad few months. When the bad mood wafts over me, it is not about me being melodramatic, it is me being truthful. I have bad thoughts and the worst thing to do is to pretend that they are not there. I might, for example, have some really bad thoughts about the fact that I cannot, for medical reasons, walk, jog or cycle or even worse, have thoughts about being told that doing these things would improve my ‘life’. I might have to voice this anger, but once I have, I will move on until the next thing happens that tries to pull me down. I will manage that in turn.

Maybe it is a flaw in my personality, but I will not accept any criticism on how I behave or how I act on the subject of myeloma. It is life and I will deal with the daily reminders however I see fit. I made my decision a long time ago, and that decision was to do exactly what I am doing. I have made concessions, I cried in my bed and contemplated my death. I have also loved and have been loved, I have laughed and smiled, I have found fun in the mess and recently, I have seen places not in my Bermuda triangle. One could describe the above, both the good and the bad as ‘living’, but if I were to do that, I’d probably vomit all over EMan.

All in? I do not think I have done that badly. Also, I cannot ride a bike.

EJB x

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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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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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