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.
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.
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.
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.