Tag Archives: Diagnosis

Bon Anniversaire – A Side Note 

There is an app I have on my mobile telephone, which I like to call The-Most-Depressing-App-In-My-Phone-That-I-Cannot-Bring-Myself-To-Delete-Because-I-Am-A-Tortured-Soul. Perhaps I like being reminded of my years of good health, or perhaps I really am a tortured soul.

Not that I could ever forget the  importance of today’s date, but said app would make it next to impossible for me to forget My Myeloma diagnosis even if I wanted to. For the last few months, let’s say thrice weekly, the App in question has been reminding me of the quick deterioration of my body over the Summer of 2012. 

Whether in the form of several photographs of just my legs on my bed with EMan on my knees, a photo of me wearing a sling, me looking thinner or general comments about me not feeling very well, the reminders have been there. Given the length of my last blog, I thought the following would commemorate said anniversary, without getting too deep reflecting on our thoughts and feelings…

I saw the following pop up one day, and saved it, in preparation of my big 03.

  

My response when I saw this pop up on 20 June?

“I proved her wrong, didn’t I?”

How Housemate guffawed. Uncomfortably. 

See, myeloma is not always bad. 

The following comment proves my previous statement wrong FYI, but that’s okay. I had to be disconnected from an IV drip whilst naked the other week, so very little embarrasses me.

  
EJB x

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Belated Anniversary

I woke up on Monday morning to send my friend a text message to acknowledge that the 18 August was her birthday and that I had remembered that fact, and in doing so, I realised that I had forgotten that the day before marked the two year anniversary of me being told that I had multiple myeloma.

Everything about that Friday, two years and four days ago, is burned into my brain, for as overdramatic as it sounds, it is the day in which my life as I knew it, changed. Knowing what I know now about My Myeloma, very little about it surprises me. It surprised me on the 17 August 2012 and forgetting the anniversary of that Friday two years and four days ago did surprise me. It surprises me because it is indeed the date in which everything changed. It might not be something worthy of celebration, but it is something I thought I would always remember, stop and think about when the clock rolls over to 00:00hrs on the 17 August.

In my defence since that day, there are other days in which I feel My Myeloma more than others, and thus at these times I pretend I am a mirror and reflect. Such days tend to feature a ‘small’ amount of wallowing and they include my birthday, Christmas Day and the anniversary of my transplant. I also spent much of Sunday on motorways travelling back to London Town after a weekend away and most of my energy was spent willing myself not to be tired. The reality on Sunday was that after a lovely weekend away in North Devon, I was extremely tired.

Such was my fatigue on Sunday, that I fell asleep for the first time in a long time, wishing that I did not know what myeloma was, let alone have it. I wallowed, even though it was not for the reason I imagined. It’s not a thought I have very often, because it is one that wastes my energy and only succeeds in making me feel sorry for myself and jealous of everybody else in my life. That is something I have had to learn over the last two years. I have also learned the hard way that I cannot go away for a weekend and not suffer the consequences for a few days afterwards. Feeling uncontrollably tired has been the overwhelming theme of my week thus far; something too that I have become all to familiar with in the last two years.

In my two years, I have relapsed twice, I have had an operation, a stem cell transplant, radiotherapy, had two full rounds of treatment and started a third. Today I start another round of radiotherapy. And that is just the medicine. Two years is a long time in Myelomaville. In this time I feel like I have aged considerably, I know I am wiser, the list of what I care about and the weight I give to the things on that list has changed dramatically. The list is far longer and I feel and care far more than I did BC. I have lost and gained weight and all over body hair, and there is a small chance that I have lost an inch off of my height. In short, there are times when I feel like the person I was 735 days ago, is nothing like the person I am today.

Myeloma has forced me to grow up, despite it’s constant and sometimes successful attempts to infantise me. So many things in my life have stalled, and yet in the two years so many things have happened. The things that have happened, in fact, the majority of things that have happened l, are not what I wanted for myself. They have happened however and the only option I have is to learn how best to deal with them when they jump up and slap me in the face whilst kicking me in my stomach. I frequently get my methods for dealing with the lows wrong. As old and wise as I think I have become, there are still days when I royally mess things up. Crucially though, I still get up and try everyday and when things do go array, I am likely to admit that it has, in an undisclosed time in the future. I then try not to do it again.

I suspect the real reason I forgot about this anniversary is because the current battle is garnering all my attention and focus. I do not have the time to reflect on what could have been. I do, however occasionally need to remind myself of what I have achieved in the last two years. I may not need to know how many Velcade injections I have had, but I do need to know that I have the strength to battle what is coming next. And do you know what? I know I have the strength because on this anniversary, I can look back at what I have achieved so far and say without any shadow of a doubt, that I do have the strength. Myeloma is hard, it is all so very hard, another thing I have learnt in two years, but my stoicism is proving to be tougher. It is tough even when I am inexplicably tired and moping around my flat for days on end, experiencing the occasional bout if projectile vomiting.

I attempt to take the difficult days in my stride. In the two years, I think I have almost successfully done that. Everyday for me is a battle of varying proportions. There was a while there where I had the pleasure of a temporary ceasefire and the challenges changed, but right now, I am right back in the fight. This time around, as I fight, I have a huge advantage on my side. It is an advantage that is a far more worthy way of acknowledging this anniversary in question. I have the knowledge of two years on my side and I use that knowledge everyday and it is that, that helps me get out of bed. It is that, that makes me strong. In case you were wondering, I know I am strong because a good friend told me so last week.

The 17 August – I salute you.

EJB x

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Diagnosis

I remember the moment I was diagnosed like it was yesterday. I remember lying on my bed on the Acute Admissions Unit on the second floor of UCLH, on a Friday afternoon, with Mamma Jones and Big Sister at my side, with the junior doctor sitting by my feet on the righthand side, telling me that I had myeloma. I remember crying. I also remember Big Sister crying, the doctor crying and the two nurses leaving their station. I remember the medical stuff that followed on the days after, my formal diagnosis, the tests, the pain and then the visitors. I do not really remember telling the people I love that I had cancer.

I know I have thought about what it was like for them before, but I have never really thought about it. I have not had the time. In my current limbo, I have a lot of time.

There are many people in my life who are dear to me, and try as I might, I do not remember telling them. Apart from the above, I remember telling A Twin on the phone. I remember telling a Lali as she sat at the bottom left of my bed, for her to repeat over and over again ‘okay’. I remember GB calling me, for me to finish my happy news for him to tell me that he had to perform in five minutes time. And I remember my friend Katy calling me crying, not knowing why I was in hospital for me to pass the phone onto Mamma Jones on the Saturday morning because I could not speak the words again.

I know there were a lot of people that passed the message on for me like a communication tree. I do not remember my conversation with the Barber of Northampton, but I know I tasked him to inform people, and I know that Middlesborough and WM told the work folk about My Myeloma. I could not do it myself.

I do not know what happened when I was not around. I do not know how my family took the news nor what they said to each other. I do not know what my friends did or whether they discussed it with each other. I found myself reminiscing about the happy August of 2012, with some friends and they told me about how they managed the early days. I can smile now about the pain I experienced before I was admitted to hospital, not knowing the cause of my pain and how I joked about it being cancer. I cannot joke about how people managed my diagnosis. I do not know what people did or said out of my view. I do not know if it is wise for me to think about it. I found out yesterday that my best friend managed it by crying under a hand drier in a toilet, she was probably inebriated, but I know her, and she probably would have done that with or without the beer.

I think the shock of finding out that somebody has cancer is something many people would wish to never experience. The shock of finding out that somebody young has a cancer with no cure is something else. It is unexpected and it is a tragedy. I experienced that reaction. I was overwhelmed by it. I experienced it with everybody who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. My diagnosis pulled the rug from under not only my feet, but the feet of all those people in my life, especially those who love me.

My friend said to me that she thought it is easier for people to understand what has happened to me now, if they had seen me during those earlier days at UCLH and watched how I become accustomed with it. I do not know whether she is right. My sister said people would forget about me once the shock of my diagnosis had passed. I do not know whether she is right either.

Six months on, My Myeloma continues to have a life of its own. Every day it tugs a little bit more wool away from below my feet and everyday is a struggle whether I show it or not. I live it everyday. It is with me everyday. Big Sister, Mamma Jones and My Myeloma are my constants.* My Myeloma really is with me everyday. I cannot see a day when it will not be with me. Now, however, six months on, the daily impact of my buddy, is not felt by the masses who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. Their lives have moved on and now the shock of my diagnosis is a memory. They do not live it everyday. The fact my life has been put on hold is not news anymore.

My Myeloma was far easier to manage when it was.

EJB x

* It should be said that I have people who are my weekends and those weekends are like a hot water bottle and EMan’s paw rolled into one.

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2012

2012 started off like any other year. I made resolutions and I broke said resolutions. Everything else up to the 17 August is a blur. I can’t remember very much of it as you will see, but then at the time, I did not know that I needed to remember it. I was just having fun and living my life. A meagre and meaningless existence for some, but all so very special to me.

In that first eight months, I know I would have gone to the cinema (once a week). I definitely went to the pub a few times and socialised with my friends. I also went to work every weekday. I did not go on holiday and I did not invent something spectacular. I just did what I did.

January was a typical January. It started with a horrific hangover and me waking up at 17:30hrs on 1 January after what can only be described as a three day bender. It was not nice. I made three resolutions, two of which were to drink less and lose some weight. Both lasted less than a fortnight, but little did I know that August would make these things happen rather than actual willpower. Thanks Myeloma. Socially, the month was taken up by my annual quest to watch as many Oscar nominated films as possible, a quest which went on into February. At the end of the month, I received an email, which stated that I made up characters to make my life seem more interesting then it actually is. I definitely dwelled on those words for longer than I should have done, but as it turns out, Myeloma has now become that character.

I do not remember what happened in February. Though I know the Oscars went ahead as scheduled and that I watched all the films nominated in the major categories as well as the ceremony itself, live for the thirteenth year in a row. I fear treatment will dictate that I will not make it a fourteenth in 2013. Sad face. Oh, this just came to me, my five year old niece came to London for the weekend and I took her on my ideal date. We fed some ducks.

In March my Gran died. I found out in my office and sat at my desk for two hours without telling anybody.

April is the fourth month of the year.

My birthday is in May, so my memory of this month is slightly better, despite spending three days (bar the hours working on the Friday) intoxicated. Housemate moved in, I baked, somebody told me they were in love with me then forgot about it and Mamma Jones and I went on a mini-break to Edinburgh. I believe this was the last time I saw the sea.

June was fun, that much I remember. I went to Field Day and Lovebox, which being in Victoria Park was delightful given the proximity to my bed, I started going to Zumba where my hips were unleashed for all to see and I enjoyed cheap beer in Wellington Barracks’ mess. June really was fun.

July proved to be a good time to be in London, despite the slow deterioration of my body. Everything was leading up to the Olympics, I saw the torch twice, went back to the Barracks, and I became obsessed with taking photographs of tourists. The start of August also rolled into this, for I spent a week of my sick leave lying on my sofa watching other people do sport. It was grand.

On 17 August everything changed and that change is well documented.

My year did not pan out how I had intended.

I did not go on the two holidays I had planned nor did I go to see my friends at the Edinburgh Fringe. I could not go to Bestival and I did not go to see any films at the London Film Festival. I have missed a number of my friends’ birthday celebrations and I stopped going to the pub. I lost two stones and gained facial hair. I no longer get the 38 bus to Piccadilly every working day and I do not cross the Blue Bridge in St James’ Park whilst walking to the sound of the beat. The mug in my locker on the 7s has long been neglected and I have not been on the 07:35hrs train from Kings Cross to Wakefield since July. In short, in September, October, November and December, everything has changed and I remember it all.

I remember my family and I remember my friends and I remember my positivity. In 2012 I have overused the term ‘Support Network’, I put my hands up and acknowledge that, but there is nothing I can do about that. Everybody in my beloved Support Network gives me the strength to not give up, even when the situation looks hopeless and the tears are in free flow.

It would be a fair assessment to say that this year has been a big pile of stinking shit covered in flies. Sure, it was memorable and life changing, but I would rather have been able to carry on with my meagre and meaningless existence.

So, bye bye 2012. You fucked everything up.

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Assigning Blame: The Response

You may recall that I wrote to my GP regarding my first appointment on 20 June during which, I complained of chest pain and a pain in my left shoulder. I was disappointed by comments made to me by the Doctor and her general attitude towards me during the appointment. I believed and still believe that there was a failure during this initial appointment to take my complaints seriously leading to a five week delay in my diagnosis and thus five weeks of unnecessary and worsening pain.

To read my letter again, or indeed, for the first time, please clink on the link. https://ejbones.wordpress.com/2012/09/11/assigning-blame/

I have now received a response from the Practice and the GP, which is below for your information. Oh and I apologise for the picture quality. You just can’t get the technology.

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