An Almost Quarterly Update

You may be wondering, ‘what the hell has Emma been up to?’ I wouldn’t blame you if you are, my life is an unpredictable rollercoaster of super fun times that many people would wish to emulate. It is for that reason that I don’t keep my blogs up to date and not because I am too tired, stuck in my bed and unable to follow the plot of Pretty Woman… Sure, I can always dream. The closest my life could come to a rollercoaster would be the teacups, where one goes safely round and around  finding the occasional thrill within the monotony, let’s say, like waving to somebody you know each time you pass them as the teacup swirls.

I’m being  a little harsh. I had a jam packed February, one that has left me feeling exhausted, sick, frustrated, happy and satisfied in equal measure. It was jam packed for me, jam packed for somebody who spends at least two full days a week in bed and has 4 good hours a day on a good day. Looking forward to it, way back when in January, I thought my plans impossible. 

Before I explain my month of (relative) excess, I should tell you what is happening with my body. Spending so much time in bed, measuring time by cycles, I struggle to fathom actual time now, but for the sake of this story, let’s go back to November. I realised that my paraprotein level was no longer falling as quickly as I would have liked. The dastardly thing had started to plateau, which by January meant the Medically Trained People took as a sign that I should be on a different treatment regime. It had stopped working after all. It was a decision that made sense to me, but worried me at the same time. It may have plateaued but on the other hand, it was not going up, could a new treatment offer more?  

In all of this, I am unable to forget that myeloma treatments are not infinite. There are only so many treatments that exist and if I work through all the possibilities available at a 6 monthly pace, what does that mean for my longevity? 

I’ll let you think about that for a while, because I have been thinking about it for a long old while. Three failed transplants and another failed treatment; I do not think it is pessimistic to put two and two together and work out the obvious. Though, I imagine my nearest and dearest do find my arithmetic something gloomy.

On the other hand, I do not think it is healthy to dwell, so let’s move on. 

My new treatment was introduced at the beginning of January. Unfortunately, I caught Influenza A, which is a bog standard flu to the masses, but in me, it meant everything had to stop. It meant isolation and face masks. Points must be awarded to my CNS who decided to swab me after I fell asleep in the waiting area, despite my protestation that it was only a slight cough and I was fine. Catching it early meant that the anti flu medication worked, meaning it only took me a fortnight to get over the flu instead of the six weeks it took last year. I was also able to suffer from my own bed instead of a hospital bed, for which I am most grateful. 
As an aside, following this experience, I will inform the Medically Trained People of any new ailment as soon as I experience it. Well, within 24 hours later. Maybe 48 hours. What I am trying to say is that I will not try and manage it alone now, the consequences of a slight bug are not the same as they once were. I must use my common sense and being a martyr does not equal common sense as much as I think it makes me look like a badass.

So, I got over the flu and once my throat and nose had been swabbed once more, I commenced my new treatment. I am sure scientifically there is a difference, but practically there is not a great deal to distinguish between a regimen of Revlimid, Dexamethasone and Ixazomib and a regimen of Pomalidomide and Dexamethasone. I still take one of the drugs nightly for three weeks, with one week off. I still have to take steroids weekly and I still feel rotten as a result. On the plus side, I do not have to deal with the sickness caused by the Ixazomib. The downside is that I have not had a paraprotein result from the new treatment yet and thus, I do not know if it is working. 

The last month has made me pause to consider whether said drugs are working and that is not just because I am plagued by pragmatic pessimism. I am in more pain than I was in December. I hope this is a result of over exertion in February. The jury is out on that one.

I am not the sort of cancer patient who reads up on new treatments and overly questions the Medically Trained People. I have chosen to trust them, rather than invest my energy trying to find a better solution. Some may disagree with this approach, but that is how I manage. I only mention this because Pomalidomide has only recently been made available as a regular treatment in the UK and I did not know this. It makes me hope that there will be new drugs and combinations of drugs, that will broaden that scary finite list that I (and so many others) am a hostage to.

Prior to last week, I had been on constant treatment for five weeks instead of the usual three weeks and I could certainly feel the difference. It felt like everything about me from my brain to my toes had slowed down. I don’t think my recent fatigue was helped by starting my new treatment straight after the flu either. Just trust me when I say, it has been exhausting. 

Despite the dense fog of exhaustion where I found myself for almost the entire month, I have had an exceptionally time of it. My compromised body handled February pretty much the way I expected it to handle it. With difficulty.

I was honoured to be invited on a Stag Do, taking place in Amsterdam. Yes, a Stag Do. That’s positively normal behaviour for humans of my age. I thought long and hard about all the issues I would have to face, weighed up the pros and cons. Limited walking, early nights and limited energy compared with the 21 able bodied thirty somethings also going we’re definitely high on the ‘con’ list. All of it pointed to not attending, but where’s the fun in that? Giving in to it, no way Jose!

Inevitably I scrimped, scraped, borrowed and I went. That act alone felt rebellious. I also travelled without medical insurance cover for the simple reason that I could not afford  a £260 minimum spend for a three night trip. That wasn’t rebellious, it was reckless and it won’t be something I would dare repeat, especially to a location covered in snow and ice. I usually live in a world where I would not step out of my front door if there is a mild frost. It meant as great a release as my trip was, I could never fully relax because I feared something would go wrong. I had even planned a contingency of Mamma Jones driving over to Amsterdam to rescue you me, were something to have happened to me.

Prior to the trip, I decided that I would loom knit a hat for each attendee. If you were still wondering what I did for January and the first 10 days of February; the answer is hats, lots and lots of hats. Sitting on my sofa making hats. Dreaming about hats.  I think it was a project that whilst garnering a great deal of personal satisfaction for being able to complete such a task, it put me on the back foot energy wise before my busy February even began. I gave myself no time to relax because I was proving a point that did not need to be made. 

I won’t go through everything I did in Amsterdam. Just know that it was a tonic. A very large tonic. I never once had to lift my suitcase and whenever I left our accommodation I felt protected by a group of bodies who were almost as worried about me slipping on the ice and breaking a bone as I was. It is quite different going away with a group of friends then going away with one’s mother. If there was a secret test, my friends certainly passed it. In a nutshell, the only person to make me feel like there was something wrong with me, was me.


This computer in Amsterdam said I was Happy. It was correct.

Leaving Amsterdam, walking through the airport, I realised that my body had done all it could. I feel for the person walking with me to the gate as he was met with a constant whiny chorus of ‘I can’t walk anymore, I can’t walk anymore’. On returning to London on a Tuesday evening, I got straight into bed, took my nightly dose of chemo and my weekly dose of steroids and stayed in bed until the Friday. I had to leave temporarily on the Thursday to go to a meeting, but that required Marvel Studio-like strength and resulted in the most horrible feeling of weakness that had me yearning for my bed.

On that Friday, the one where it took me until 15.30hrs to have the energy to get out of bed despite my cleaner trying to change it, I was due to travel out of London for a wedding. For somebody that has four hours of energy a day, on a good day, this was a mammoth task. Gargantuan. I was not going to miss the wedding however, it was too important and I too stubborn for that to have been a possibility. Somehow, and I really do mean somehow, because I have no idea how I achieved this, I managed to pack, shave my legs and meet my friends at our car rental for 17.30hrs.

Once again, like in Amsterdam, I felt fully protected by the people I was travelling with. They were so considerate of my limitations, I felt like I was getting my energy through them. They drove me to my hotel, financed said hotel and just made the whole thing possible. It made it possible for me to watch a dear friend get married, with my body only giving up two hours before the wedding was due to end. Give up it did. With all the excitement, drugs and post Amsterdam fatigue, by 22:00hrs, talking was proving to be impossible. Walking, from an afternoon of standing and not putting my feet up, had slowed to a shuffle accompanied by constant pain from my pelvis to my neck. Unavoidably, having lost my ability to speak and most of my leg function, I had to leave.
This is me posing next to, I do not know what, at said wedding. 

Leaving early made me so angry. There are times when I tolerate my body, but crawling onto my hotel bed trying to make a nest of pillows large enough to ease my pain, I hated my body. I was embarrassed by it. I was annoyed that I could not speak to the friends who where there as much as I would have liked because my body had automatically switched to battery saving mode. Whilst in that mood, I also became irritated that the same rules applied in Amsterdam. I may well have got the most I was capable to get from it, but I did not get to experience everything on offer. Myeloma always makes me feel, even temporarily, that no matter how much I participate, that I am on the outside looking in. 

Fortunately in this instance, I took 10mg of Amitriptaline and I was able to have some resemblance of a reasonable night’s sleep. Waking not to a feeling of melancholy, but to a hangover mixed with pleasure that I was invited and able to attend the wedding, I forgave my body. It has not been forgiven yet. 

All my common sense tells me that when one is as deep into the myeloma journey as I am, I have to see these trips and experiences as a bonus. In February, I had two big fat bonuses. 

I’m paying for all of this now. On the Sunday I returned home, I got into bed, took my steroids and stayed there until the Wednesday. I then travelled back to my parents’ house and spent some more quality time in bed, feeling the burn.

Ignoring the puppy draped round my neck, I think this photograph sums up ‘the burn’ pretty well.

It is now almost two weeks later and I am still tired. I am always tired, but sometimes, just sometimes, I can pull a rabbit out of a hat and experience something different. 
Running throughout this whole period, in addition to my pill popping ways, I also completed my annual Oscar challenge. To quote an Oscar winning movie, I will ask myself when frustration kicks in, how do you like them apples? 

EJB x

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One thought on “An Almost Quarterly Update

  1. Pam Lewis says:

    Wow Emma, I always enjoy your writing and am amazed at all you have done these last couple months. Love it that you made all those hats. A lot of people knit a lot of pink hats in the US for the Women’s March against our new “leader.” I tried and failed miserably, because I have only made hats on a round loom and couldn’t figure out how I could possibly accomplish the Pussy Hats on the loom and chose needles ( they were called that only because our “leader” used that word, you might have heard).

    Your photos are great and I loved the purple dress, you looked smashing!

    Sending you all good vibes from NYC and what a pleasant surprise to find your entries in my email. SIncerely, Pam Lewis

    >

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