Monthly Archives: December 2016

Thumbs Down πŸ‘ŽΒ 

WARNING!

The following blog does not contain any references to feelings or death (bar a brief discussion about my hatred of something). Therefore, to break out of my current cycle, this blog is not depressing. My usual content will resume at some point, so in the meantime, sit back and enjoy reading something mundane. 

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After living with Myeloma for 1589 days, I thought I had experienced every possible side effect, bowel issue, general irritant and injury possible that relates to this wretched disease. Yesterday, I discovered that I was wrong. Things can still happen as a direct result of having Myeloma that I can not foresee. Yesterday, my unforeseen injury was paper cuts. Those small things. That’s right, for nearly 48 hours, in spite of my current inability to walk up or down any stairs without clutching on to both banisters and leaving the sound of what some would consider to be very odd sex noises in the air, whenever and wherever I do something remotely ‘strenuous’; I have been moaning about paper cuts. * For the past 48 hours, all of the above pales in insignificance to the paper cuts, the bleeding paper cuts I received all in the name of Myeloma.


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How could this possibly happen I hear you cry? How could I, Emma Jane Bones make such a Living-with-Cancer -rookie-error, that resulted in the breakage of two thumb nails and cuts to the skin between the nail and thumb, on both thumbs at the same time? 

The answer lies with tablets. Lots and lots of tablets, technique and a dash of poor post application of gel polish nail care.

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I dread to think how many tablets I have taken over the 1589 days, I wouldn’t even know how to calculate it. As a rule of thumb, I work on a fortnightly basis instead because sorting my medication is the most depressing thing I have to do on the regular. I do not want to be reminded of my shackles on any basis, but having to do it twice a month beats having that feeling it evokes four times a month. On a far more practical level, sorting my drugs in bulk creates space. Yesterday was Drug Delivery Day, so I was in desperate need to make the packaging of two bags full of drugs, disappear. I live in a room in a two bedroom flat in London;  the space is too limited to include cancer medication and the unnecessary packaging that comes with it. I ” have two dossette boxes, should I live the dream and get four?

I currently take at least 33 pills a day. My weekly pill total has 245 pills destined for my gullet, which takes into account the extras medication requires for Mondays. That’s 492 pills per fortnight; that is 492 individual pills removed from a box and then pushed out of its packaging into the relevant divided section in my waiting dosette boxes. 492. 492 times I pushed one of my thumbs against the slab a pill willing it to come out of it’s packaging before the top of my thumb hit the empty casing of the plastic. I probably failed 491 times. With each push, I  added further injury to my already injured thumbnails. I should have known better. 

Yesterday, I also receieved over 300 of my prescribed laxatives spread across at least six different boxes. It’s been a while since I mentioned it, but know that this is medication js still extremely cruicial to my wellbeing. Being the Myeloma Pro I once was, I decided to decant these into an old empty, correctly labelled,  medicine jar I had kept for such an occasion. That’s one of my Top Myeloma Tips by the way (in modern times, it could also be referred to as a ‘hack’ but I am not modern nor am I a Buzzfeed article). Who needs boxes when you can have a clean and empty medicine bottle with a safety cap? As usual, I’m digressing, back to the story at hand; it simply meant there was approximately 300 pills on top of the 492 pills to be popped.

It becomes grey. At some point during my  hour of drug dispensing, I broke both my thumb nails. As my legendary stoicism lives on, I  too, soldiered on in spite of the pain. I kept going, despite my thumbs turning more red with every push. I endured. I thought it couldn’t break me. Then I saw the blood to accompany the stinging feeling that had been going on for a good thirty minutes and I saw my surrender. I turned to Housemate and asked him to sort out the remaining laxatives.

Quick sidebar, can you see why I hate the job in question? Obviously you can. I have developed a coping mechanism to get through it all. There is only one pleasant thing about filling my boxes and believe it or not, it’s the colour combinations of my medication.  Stick with me. At nighttime, I take a blue pill, one bright orange , two pale yellows, two bright yellow, two grey, one pale orange and several white pills of varying shape or size. Once safely tucked into their relevant sections, I look at them through cross eyes. It’s hashtag satisfying. 

EJB x
* This really just means any movement greater than holding my mobile phone with rested elbows and tap, tap, tapping away. Anything else, results in a noise and a grimace.

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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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Pleasure

I have been pondering in recent months the following question, it’s a question that goes round and around my head until I am down the well worn A road wondering about the point of my existence. It is a question that comes without innuendo despite the way I have decided to word it. It’s a question where to answer in the negative terrifies me.  The question, my friends is ‘can I experience pleasure, anymore?’

I suppose I could have substituted the word ‘happiness’ for ‘pleasure’, but I feel happiness is something that can be temporarily achieved in a 22 minutes episode of Modern Family. Pleasure, to me anyway, is something else. It’s prolonged and it involves satisfaction. Something meaningful that isn’t transmitted through my television. 

It has been a long dark autumn where I have felt that all pleasure and all opportunity to feel pleasure; that the function for which has been removed from my brain. I don’t laugh anymore. Long gone are the days when the innuendo sort of pleasure was met; melphalan and menopause put paid to that years ago. I’m not worried about that. To the all encompassing sort of pleasure of which I yearn, I don’t know what it should feel like anymore. How much did I really laugh before?

There are many days when I find myself waking up, knowing that the day ahead is going to be much the same as my previous day, and as with the day before, I will spend it going through the motions. Not emotions you understand, just motions. 

I don’t have a job, I get tired washing myself, there is not a higher purpose to my life most days then just taking my drugs, patting the dog and making sure I am out of the bed before Housemate gets home. I don’t have the functionality to do anything else.

I suppose, I do the absolute minimum to survive, especially on the days of steroid crashing and Ixazomib spewing. I wake, I sit, I eat and all to the soundtrack of my television. 75 percent of the time, I could not tell you what I have watched from one day to the next. I probably could not tell you everything I have watched today. 

On the days I can move further afield, I do the things I used to do that entertained me. Except now, they have to be done within a very tight social security allowance budget,  pass the necessary  considerations (constraints) like walking distance, seating and distance from home, before I can even leave the house. Evidentially, there are a lot of things I would wish to do that I cannot. Despite these obstacles, I do, somehow, manage to pass the time.  The most common feeling I get on return from any of these jaunts is, exhaustion. 

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Is it the Larozapam my brain asks? Is this indifference I have allowed to develop towards my life due to the multi-use drug I take to prevent nausea but others take for sedation and anti anxiety?  Or, is it one of the other 12 different medications that I swallow on a daily basis that has stopped me being able to feel? Have they brought this shield down that I cannot penetrate, and the weight of which leaves me all so very fatigued? Internal feeling of apathy, anyone? 

Of course, there is another theory. This one might be my favourite. I wonder if I no longer feel pleasure because I do not want to feel pain. Have I, since my relapse put myself in to an ultimate self preservation mode? Should I patent it? If I cannot laugh and feel happy, then surely that’s a decent payoff to not feel constantly scared and alone? For four years with My Myeloma, I was waiting for something positive to happen, it didn’t.  The sad truth is, I am now waiting for the ultimate bad thing to happen and I am praying that that does not come too soon.

Bar one week in October, I have not had a midweek outside of my bed  since I started my current drug regime five cycles ago. It’s an enslaught. Any strength I build up in the days pre drug crash, is depleted on the first day post my Dexamethasone and Ixazomib dose. Then with each day that passes, my reserves run lower and lower. Concurrently, for every time a loved one forgets that I cannot do anything on a Tuesday or Wednesday (and possibly Thursday) and then they invite me to do something on a Tuesday or a Wednesday, I go into the red due to my frustration, anger and plain old green jealousy. My life is lousy enough without having to repeat it five times a week.

In my last blog, I spoke about death. Not because I want to die, but because I fear that is what is left for me now. I hope it is not imminent, but all that depends on a variety of factors I have no control over.  It’s not the place or time to discuss these things in this blog, but I saw a figure a few weeks ago. A potential timeframe, and I really don’t have the capacity to think about what that means for me or for those in my Support Network, and if it is possible to balance that with the quality of life I have now. There are days when I would feel better off. 

It’s becoming incredibly hard for me to consider myself as anything other than an expensive perishable with a limited shelf life. Sure, I am Emma, I am EJ, I am me; but what does that mean now when so much of my identity has been erased? Most the time, I feel like a stranger to myself. 

Am I lacking pleasure because I am still the pre Myeloma version of me, just significantly shorter with less limbs, whilst everybody around me has managed to grow, some have even gone as far as to grow whole new humans in the four years that I have had this wretched disease?  

I was once told that my situation was too depressioning to be around frequently, so the easiest thing for somebody to do was to cease all communication and live their lives independently of mine. Understandably, I  worry about this becoming my legacy because I will not mprove now. Everybody wants to be around you in the first year of Myeloma; the numbers dwindle somewhat thereafter. 

The insecurities this has left me with are profound. I  try to avoid talking about myself (she says in a rather lengthy blog about herself and rolls her eyes) as much as possible. But then, what else do I have to talk about? I’ve already said I don’t have a job and I don’t remember what I did yesterday. Has my monotony made your pleasure disappear? Have I made you runaway yet? 

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There you are! 

Did you know I had a point at the start of this blog? It wasn’t that I am a bad editor,  because I think I have proven that point with what I have written above. No, my point was that my pleasure has not been lost in self pity. I have recently returned from a much needed two week break away from my medication. I currently have no idea what that two weeks away from medication has done to my body, but I know what it has done to my mind. It’s called perspective my friends and a dark cloud has been lifted. Not eradicated mind, lifted. 

It’s harder to see and it’s harder to earn, but believe it or not, I do still experience pleasure. Not the innuendo kind unfortunately, which makes my four weekly pregnancy tests quite the waste in resource. 

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I lost sight of my pleasure for a little bit; for five months in fact. I lost it all to fatigue. Fatigue has literally been ruling my life and I cannot emphasise this enough that fatigue is not just restricted to feeling sleeping. For me, everything slows down, everything becomes harder and everything whether it is an email or an existential crisis, seems a  much larger issue than it actually is.

Looking back, there were hidden and frequent pockets of pleasure throughout the last five months. The windows to enjoy myself are smaller and further apart but pleasure can be found and it has been experienced. By me. 

To emphasise my point, here are a few examples: any conversations with my nieces, being a party to Treat Yourself Sunday, talking Christmas wrapping with Big Sister, watching a movie at a friend’s house or maybe, just maybe bending the rules a little bit and staying out past midnight once in a blue moon. Or, it could be something as simple as saying goodbye to somebody and walking away with a smile on my face and a spring in my step. It’s in knowing that a friend cares enough about me to swim a mile a day for 26 consecutive days to raise money for Myeloma UK (https://www.justgiving.com/fundraising/Emma-Boucher-Matthews). It’s going to the cinema whenever my body allows it, not falling asleep and writing about it in my little black book. 

In October, my some miracle and a little bit of understanding from the Medically Trained People, I was able to once again attend the London Film Festival 15 times in spite of my treatment. I got dressed and put makeup on everyday. I felt learned and alive until I got tired and had to spend a week in bed once it was over. I did not end up celebrating the 10 days I spent enjoying the festival, I wallowed at how quickly my body went downhill.

Most recently, I went on a holiday. An actual holiday. With a lot of help from Mamma Jones, I used my passport and I opened my eyes. From the minute we left these fair shores I experienced pure pleasure.  The holiday gave me a swift kick up my derriΓ¨re, and reminded me there is pleasure to be found everywhere. Even when the prognosis might not be what I want it to be. I need to find a way to remember this the next time the tough gets going.

Above everything else, I need to remember that my life is not a foregone conclusion yet, and I should not be treating as if it is. And,  in the words of Uncle Albert I also need to remember that  ‘I love to laugh. Loud and long and clear’. I really do want to be a merrier me.

EJB x 
P.S. There is still time to sponsor my friend’s marathon swim, which she completed yesterday. Just use the link above. 

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