Category Archives: Myeloma UK

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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The Do-Gooder

Many people can be forgiven for being under the impression that I spend all of my time, idle, lying on my sofa neglecting my looks and my blog, whilst wallowing in self pity. The truth is, that only accounts for 80 percent of my time. The rest of my sick leave is spent doing a myriad of exciting things that one day, I will find the time and brain function to tell you about. In the last week however, I have managed to devout approximately 10 percent of my energy to altruism. That’s right, altruism, for I, Emma Jane Jones am altruistic. I definitely did not do the things I am about to tell you about, so that I had something interesting to tell you about. I did them because at my very core, I am good and, I am selfless.

You have all heard the saying charity begins at home. Well in the last week, charity for me has actually meant thinking about me and only me. That’s home right? There has been a great deal of reflecting and delving into my personal world of myeloma, producing 2666 written words, one bout of insomnia, a photo shoot and the ability to speak to a room of medically trained people whilst wearing leather and having a hot flush.

I am yet to conclude whether these exercises have been healthy for me, but that is how I know that I am really an altruistic bunny rabbit requiring praise and awe. I have done two things for charity that you could say were difficult for me to do. They were difficult for me to do. On here, I only really talk about my current feelings. I rarely attempt to see a bigger picture. However, in two different ways, for two different charities, I have done just that. I have recounted and explored my journey from when I first felt a tinge of pain in my back to where I am now, which in case you were wondering, is called limbo. I rarely look back at my treatment, because my focus has to be going forward, and getting through the day when I do not know what forward looks like.

Looking back, firstly in words for Myeloma UK’s newsletter, was overwhelming. I did not expect to be overwhelmed, but I was. I don’t need to recount my considerably over the word limit story for you now (for that will indeed come), to say that it invoked some emotions that I would rather not have felt. It was one thing for me to recognise my stoicism and I do, it is quite another to see perhaps the mistakes I have made since I was diagnosed and to relive some of the nastiness I have encountered along the way.

The activity was accompanied this morning by something else that I would describe as ‘challenging’, but challenging on the most superficial level. This morning, in my flat, I, along with the dog, was the subject of a photo shoot. Not just any old mobile phone photo shoot after a few brewskis; this one featured an actual tripod.

When 80 percent of my time is spent being idle, the physical expansion of the my body is no surprise and being the main subject of any photograph, is now, not what I would describe as fun. It’s the end product that puts me off. Housemate however, seemed to find my posing quite funny, especially when I did so in front of some meringues. That’s right, meringues in a tin.

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It’s fine though, I think the difficulty I had in producing a genuine smile, will just be interrupted as constipation. That would be no lie in any tale about myeloma treatment.

The second of my endeavours this week, was for the little known charity fond of a coffee morning, called Macmillan Cancer Support. Some weeks ago, I was asked if I would be willing to share my story with some of their helpline staff, who were travelling to London to do some specialist training on myeloma. Maybe this is not that altruistic, but I was so pleased to be asked, I could not say no. In fact, I think I almost looked forward to it.

On Wednesday afternoon, I made my way to Huntley Street and sat through one presentation by a Medically Trained Person on myeloma treatment and escaped before a second person delivered one on stem cell transplants. I did not think my mind was strong enough for that, when an hour later I was to address the room on my many side effects from before diagnosis to my present. And address them I did, warts and all. Beforehand, I had discussed what I was going to say and I thought about it many times over and I almost remembered everything I had planned to mention. I did forget to say how my forgetfulness causes much frustration and difficulty in my everyday life. Go figure. I did not forget to talk about depression, isolation, friends, fertility and faeces. As you can imagine, it was a barrel of laughs. It was also very honest.

The person who planned the training said that I provided a human face to all the technical jargon they had sat through earlier in the afternoon… I am not one to toot my own horn [often], but I think my comments were well received, that, or they just felt sorry for me.

It’s Friday night now, and I have decided that now is the time to revert back to looking out for Number 1. Número Uno. Me. I am tired now.

Who knew that talking about oneself could be so selfless?

I have always wanted to be a do-gooder. If I was not superstitious of having a bucket list, I could tick that right off. Um, I do not have a bucket list, so I will just say that it feels so much better than a monthly direct debit… Hang on, does that make it just a little bit selfish?

EJB x

P.S. Did you know that the people on the Macmillan helpline are trained nurses? It’s true.

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Endurance Tests

Cancer is an endurance test. One thing I have learnt since my diagnosis, is that to enable good health and a continuance of life, one has to put in the training and endure all the shit cancer throws at you. You get your rest, take your supplements, work out the brain, set targets and hope that you will reach the finish line intact.

Eleven months or so ago, when somebody told me they were planning to do an endurance test of their own, I thought I would have long finished this particular test of my own. Long finished. That has not been the case. My test goes on and nobody know when that will finish and that fact makes us all sigh. Sigh.

Tomorrow, it is the Ironman Wales. Wales is a country in the United Kingdom FYI. I won’t tell you all about it again, because I already did that once before (https://ejbones.wordpress.com/tag/myeloma-uk/), when I asked you for your money then. In short, Neil will be swimming, cycling and running tomorrow to raise money for Myeloma UK. It is an endurance test indeed, especially because his wife has just had a 15 day old baby.

So, right now, to assist similar people who are currently on the endurance test that is myeloma, I am asking for your money again.

https://www.justgiving.com/Neil-Whitney/?utm_source=Sharethis

Oh, and good luck Neil!

EJB x

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Man Of Metal

WARNING! – This blog contains a request for your money, again

I am not sure why anybody would call an event the ‘Ironman’. I think, ‘Man of Steel’ would be more appropriate because the event is ridiculous and frankly, it sounds impossible to somebody who always found a way out of PE. Hang on, I am being sexist and I am a female; ‘Human of Steel’ would be better. Everybody is equal. Regardless of the political correctness issue, I should try and get to my point…

Neil has decided that he is going to run the Ironman Wales in September 2013 to raise money for Myeloma UK. He is clearly crazy. The Ironman is 2.4 mile swim, followed by a 112 mile bike ride and then, because you might as well commit yourself, a full marathon. Back when I was a morbidly obese healthy person I could swim 1750 metres, fall off a bike when I attempted to turn a corner and run 10 paces for the bus. So…

It is 10 months away, and so my plea for cash is coming early (and anticipate that I will request again) but he needs to raise £2000 to be able to participate. They really do make you jump some hurdles…. As I am sure you will appreciate that there is a considerable amount of training and commitment involved, and I imagine blisters. You don’t have to experience it though,because he will, but you can donate if you are that way inclined. I am not talking megabucks here, every little helps, it really does. I know I keep hitting you up for cash, but Myeloma UK help fund new treatments for Myeloma. I have Myeloma and I want there to be a cure. I am not ashamed of asking people to help in anyway they can. To date, I have donated a measly £55 to Myeloma UK. I intend to donate so much more if My Myeloma allows it.

Neil’s JustGiving page explains why he is doing it, but in case you still need to be persuading, I will tell you why he is doing it. Neil’s father-in-law, who just happens to be my dear friend Rachael’s dad, also has Myeloma. He was diagnosed seven years ago and he has had two relapses. Huw, the man in question, has handled his illness with strength and courage, and his family have been both an inspirational and a support to me since I was diagnosed in August. Rachael, for example, just today, braved driving down Holloway Road to see me. That really is something else. To find out more about my views on the family, please revisit the blog post below:

https://ejbones.wordpress.com/2012/10/07/aspiration/

It’s late now, so I will leave you with the link to Neil’s page.

http://www.justgiving.com/Neil-Whitney/?utm_source=Sharethis

Many thanks for your time and the warmest of regards,

EJB x
Lazy Arse

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Running For Friends

My two beautiful and very organised friends, Sarah Lester and Laura Phillimore are going for a little run next weekend. When I say a little run, they are doing the Bristol Half Marathon. I am not able to do the Bristol Half Marathon, and trust me, this has absolutely nothing to do with My Myeloma. I just can’t run. I don’t like it. As a rule of thumb, exercise and me do not get on. We never have.

It gets on with Laura and Sarah however, and as well as having the personal achievement of being able to run 13 miles next weekend, which I am in complete awe of, they have been kind enough to set up a Just Giving page to raise money for Myeloma UK. The page is by no means last minute.

Once again, I am truly thankful to have friends like these and I know they are going to smash it.

The link to their page is below as is a lovely photograph of the two of them just so you know that I was not lying when I said they were beautiful, but that’s probably because they exercise…

Thanks Ladies.

EJ x

http://www.justgiving.com/Laura-Phillimore1/?utm_source=Sharethis

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Just A Little Guidance

Evening all,

A little bit of insomnia has led to me finally reading all the Myeloma literature I was given in hospital. It is pleasing to note, that for the most part, I was actually listening to what my medical team were telling me, as most of this is not a surprise to me. I was listening to the Doctors of UCH, so much in fact, that at this moment on time, and I’ll hopefully be able to confirm tomorrow, I am choosing to believe my Doctors about the future improvements to my bones through my treatment and not the ‘Myeloma UK’ literature, which unless you dig, does not seem to mention improvements at all. There is just a lot of guidance about living with the pain. Let me assure you, I have no intention of ‘living with this pain’ in the long term. I was told that it was going to improve and go and thus it is going to improve and go. It has to. I am fairly certain it is starting to get better already, albeit at a snails pace and trust me, I am being nice to the ability of said snail.

Despite this slight blip, the guidance is actually really good. Plus my friend speaks highly of this charity and Rac knows her stuff. Since my diagnosis, I have been asked a lot of questions about Myeloma from friends, which I cannot answer, and I think the ‘Essential Guide’ sums it up for you all quite nicely as an introduction, should you want to know more. The guidance will be able to answer your questions better than I can about the medical stuff (Big Sister is especially going to like the ‘Blood Annex’, though we could probably just get that from Haema-Dad). The guidance will not be able to offer more in terms of my personal outlook and wit, but I think you already knew that.

A few things to note, I am on a trial so my treatment is slightly different and the prognosis section should be avoided at all costs because the stats are taken from all Myeloma sufferers and as most of them have a good 30-40 years on me, it makes my odds sound horrific and scary. Oh and I am a ISS Stage Two – IgG – Lambada, with lytic lesions (6 of them I believe).

So, the essential guidance can be found at the link is below:

http://www.myeloma.org.uk/files/2913/3767/6373/Myeloma_Essential_Guide_1_June_2011.pdf

If you then want further reading after this, I recommend the Info Sheet about the bones. It explains how Myeloma is different to other cancers and how debilitating the bone deterioration can be. Clearly, I only think you should read that one when you need a little ‘pick me up’.

Do not be alarmed about abusing the website. Anticipating the massive increase in visits to the Myeloma UK charity website – this blog really has given me delusions of grandeur – I just made a wee (and I mean wee) donation to the charity, so you can read their well researched guidance notes guilt free.

Hopefully sleep now.

EJB x