About

My name is Emma Jane Jones. At the time of writing this, I am a 28 year old living in Dalston, London, working in Whitehall, fortunate to have an amazing family and delicious group of friends. I should probably mention that I am single. I like to think that this is because I was once morbidly obese and I seem to be attracted to people who are not massive fans of me, rather than think that in am repulsive. Oh and I like stuff, I won’t make a list now because this is not a dating website, but essentially if you talk films with me, we’d be fine. That’s me in a nutshell. If you stick with this, you’ll learn more to be sure. Do not fear though, this is not going to become a Single-Gal-About-Town blog.  I’m just not that sort of girl.

On the 17 August 2012, my life as I knew it, be it something relatively superficial like my social life, or something bigger, more grown up, like my relationships, goals and plans for my future, changed. 

On that specific Friday afternoon, in a ward at UCH London, I was diagnosed with Myeloma, a form of bone marrow cancer, which is treatable but in the vast majority of cases not curable. Not curable… What does that mean? It still means, for me at least, chemotherapy and other treatments, but crucially that if my first treatment is successful and I go into remission, the cancer will at some point, be it two, three, five or ( fingers crossed) ten years, return and I will have to fight it all over again and if I am lucky, again and again.

This blog, EJ Bones, will follow my progress through my first round of treatment and beyond, with notes, photos and comments as and when I feel the urge. This will be a no holds barred look at my life, so prepare yourself, sit back, read, share, and help raise awareness for myeloma AND afford me the opportunity to exhibit… I have cancer. 

This blog is dedicated to my friends and family, whose support, love, loyalty, kindness and sheer awesomeness, has made me find the strength to write this but more importantly, fight for My Life.

26 thoughts on “About

  1. […] Myeloma HomeAbout Aug 22 2012 Leave a comment By ejbones […]

  2. gloria Anderson says:

    Good luck in your fight with this Myeloma, I have just seen your blog via my daughter Maxine who I think is a friend of your sister. I have so much admiration for you and I want you to know that you are in my thoughts. Get well soon. Do not give up your fight even if the tough times there are always people who care for you and want to see you well again Even people who have never met you. Take care. Glo xxx

  3. Kate Stokes says:

    Emma, it’s been years but it was so sad to read about your diagnosis. You seem to be coping so incredibly bravely with everything that has been chucked at you over the last week. You are in my thoughts and prayers – feel much better soon Emma xx

  4. Debbie Harries says:

    Good luck Emma and don’t stop fighting it. I’m Nick Warlow’s auntie, I’ve also gone through chemotherapy…I had it weekly for 6 months….so I know what you’re going through…keep positive xxx

  5. Fiona beattie says:

    Oh Emma I remember you from school.. Be strong and remember you are loved.

  6. jane says:

    Wow you are so brave. This is a facinating blog. Well done and good luck.

  7. Adrian says:

    Good Luck Emma, you dont know me but i know your Mother and Sister and heard about your illness, you come across incredibly brave in your blog and i wanted to stop by and wish you all the very best in your fight and don’t loose your excellent sense of humour.

  8. Christine lees (56 sorry I. Am an old one) says:

    Good luck Emma I came across your blog a few days ago It’s so helping me Saying being out for 6 hours for 1 injection rings a bell. I was diagnosed with myeloma in June after 2 weeks of unbelievable backache ( childbirth is nothing compared to that pain ) . Thanks for writing the blog Christine

  9. Lorna says:

    Hi Emma. Like Christine Mike and I are older, he’s a boyish 57 and I’m an incredibly young 49 not ever going to be 50 year old. Mike was diagnosed way back in 2010. I found your blog via MyelomaUK so you are stuck with us. 🙂

  10. Jet Black says:

    Having read your ‘About’ section, I think we have a fair bit in common. It’s so good to connect with people through myeloma/blood cancers who you’d like anyway, but just hadn’t met in the ‘normal’ run of things.

    I also used to live in London, very near Dalston (on Albion Road, Newington Green). Like you, I love cinema, especially independent and foreign movies and while I’m not as young as you, I still feel way too young to be considering death, but I do – frequently, even while I engage in life as fully as I can. It’s a bit of a see-saw… await a soon to be published blog update on that very subject. 🙂

    P.S. Some films I’ve seen recently that I’d recommend, strangely enough with very similar themes, and all French – Untouchable, Rust and Bone, Amour. Enjoy!

  11. Deborah says:

    Dear Emma
    Thank you for writing this blogg which I will continue to read with great interest and you never know may even start my own.
    Unfortunately 3 days before my 50th birthday this year on the 10th Jan I received the news of my diagnosis of myeloma. Now everything is going at quite a fast pace as I am going through the trauma of grief, terror and utter desperation. Luckily I am being temporarily rescued by the recently started steroids that have put me on a bit of a high and causing me to spend a fortune on new clothes and non stop rambling ( hence this reply probably being longer than I would usually do!) I too am being treated at the UCLH and will be starting the PADIMAC trial on Jan 28th if the pre tests ensure my eligibility.
    I am trying to get my head around the changes in lifestyle I am being forced to make.
    I have been lucky up to now as I have a dream job, a loving husband, two beautiful daughters, a loving family and some very special friends.
    By profession I am a mental health specialist and have set up a service and a team of psychologists,counsellors , NLP practitioners, solution focused therapists etc so now I have a whole team at my disposable who are there to help me on my journey. Trouble is swapping from the caring role to be the one that has to now receive the care is a very difficult transition to make. Also being a bit of a control freak I fear that putting my life in the hands of the marvellous doctors and nurses at UCLH is not easy. I am not sure if they realise what the are taking on but I have already told them that I am holding them responsible for keeping me alive, No pressure then!!
    My husband loves foreign films and I bought him quite a few for Xmas and I am now holding you responsible for his new found excitement with the link to the Curzon site! Looks like I am in for a run of subtitled joy! Colin compliments me so well he is very laid back, lives in the moment,is very auditory, is in touch with his feminine side ( in a good way) I on the other hand love to multi task live in the excitement of the future ( causing a bit of a problem when in doesn’t look as rosy now). We are both dreamers love to travel and have recently swapped our beloved VW camper for an old Hymer. I have up to now lived my life in a bubble, thinking I would live forever, happy in my own world and a great believer in positive visualisation. I even named my first daughter Pollyanna!
    Oh dear I have rambled – I do apologise.
    Perhaps I shall just copy and paste this as a start to my own blog!
    It will be good to get to know you and I do believe together we are stronger, somehow we will find a cure for this before its too late.
    Take Care
    Deborah x

    • ejbones says:

      Hi Deborah,

      Sorry to hear about your diagnosis. You will hear that a lot. It’s annoying, but in truth, I do not think that there is anything else you can say. It’s crap.

      I won’t give you advice. You are probably getting so much information at the moment that you will not be able to process at it all. I will say that I started the blog so that I didn’t have to repeat myself over and over again to my friends and family. The reality is, I still have to do the Road Show, but I find the blog invaluable. My counsellor says the best thing to do is confront negative thoughts, so I do that on here and then I can just throw them away again. It’s good now that other people, like yourself, can find the blog and look through it. If my experience helps even a little bit, then that is a bonus.

      Now, I said that I would not give any advice, but seeing as you are being treated at the same clinic as me, here are a few little tips to make your days easier at UCLH, I wish I had known this from the start;

      1/ There will be delays. Bad ones. On days 8 and 11, get your bloods done on the LG floor. It will speed things up a bit. You just need to pick up the form from the 2nd floor where you receive your treatment. So get day 8’s blood form on day 4 and day 11’s on day 8.

      As there are delays, either take for in (because the steroids will have you starving) or give in and eat the hospital food. The lady walks round between 11-12. If you miss her, there will be some mediocre sandwiches, although I am now partially fond of the corned beef ones.

      PADIMAC patients are treated in Bay B. It is not a coincidence that you go to me side.

      Take something to do. They have power points.

      2/ Try and have your Zometa (the bone juice), if you are having it on Days 1 – 4, because you’ll already have a cannula in for the chemo. It just saves needles and time, although you’re supposed to have it every four weeks, at least I am. It may be prescribed differently for you.

      3/ Use Janet or Alice as much as you can. I am not sure of their job titles, but they are connected to the trial and they (I have Janet) will be the people you see and talk about your treatment with all the time. They will know you better than your doctors. Janet is beyond helpful. I am fond of texting any questions to her. Unless something is amiss, you’ll only see a doctor every three weeks.

      4/ If you are there early, do not buy a tea from Costa, go into the Macmillan Support and they are free (though I do give a small donation each cycle so my conscience is clean). Their support is invaluable to me. Everybody knows my name and they are there for me to talk to even when I do not think I want to talk. They have been so helpful throughout everything. Currently, that room is my equivalent of Cheers,

      5/ Take advantage of the free therapies provided through Macmillan. My bones are so bad, that I am particularly fond of the Raki.

      6/ The nurse will tell you this, but get your Velcade in your stomach rather than arm because it leaves a mark and at least there it is hidden.

      7/ this is far easier on cycles 1-4 when they know you will definitely be going on for another cycle, but when collecting your drugs, either put the prescription in a day before, or ask Janet to out it in for you if you cannot. As you are on a trial, it takes forever for them to dispense. If you stay on for 5 and 6, you’ll just have to wait, unless you find a better method than me. It takes anywhere between 30-90 minutes.

      8/ You’ll probably know this from your job, but take the Dex as early as possible in the day to help with sleep.

      I think that is everything I know to make things a little easier in the clinic… I also take in my own herbal tea bags because the free tea is horrible on the 2nd floor. I wish I could remember the name of my favourite Nursing Assistant, her cannulas are the best. Less bruising.

      Good luck. If you have any other questions, I will be here. There are others too, but if you found me, I am sure you have found them. I won’t be on the second floor much, but you may see me around. I’m the youngish one with headphones.

      Emma

      • Deborah says:

        Thank you Emma your advice is a great help and I shall have it at the ready with me on my trusty iPad. At the moment I seem to be inundated with visitors, which is lovely but taking up a large part of the day so not sure when I will get my blog started. Today is a good day as I am on a positive high so life is temporarily looking pretty ok. Who knows what tomorrow will bring but I will worry about that then!
        I hope to catch up with you sometime at UCLH

        Take Care

        Deborah

      • jane butcher says:

        wot lovely advice for a fellow sufferer. you are so thoughtful

  12. jane butcher says:

    I am treking to Base camp everest in aid of medical research being done at uclh

  13. lexsborgia says:

    E.J, I have nominated you for The Liebster Award, I don’t care if you have 10 readers or 1000. Your story is a beautiful paradox, in so many ways. Remember that episode of Doctor Who, when the Master sucked away all his lives! The entire world thought of him shouted his name in unison… and it healed him. I’m shouting, and I hope you can hear me.
    From someone who cares. Cheers.(no naughtiness 2day)

  14. Lex says:

    Hiya EJ! Thinking of you. I decided to have a pizza, and you came to mind. Where is the connection? I don’t know but I intend to savour the aroma and sink my teeth into its succulent composition, with a glass of Corsican white wine. No, I will not tell you what kind it is, but it’s my favourite. I’m smiling, and I hope you are. Virtual hugs4u from Berlin.

  15. Dear Emma, My name is Nancy, and I came randomly across your blog. I am a young cancer patient living in London as well. I was diagnosed with breast cancer last year. I hope it is not too presumptuous of me to write you. I am touched by your story. I was wondering if you have read the memoir of Michael Gearin-Tosh called _Living Proof_? It is a wonderfully humorous book about a fight with the same cancer that you have. I couldn’t put it down. It may be out of print now, but if you can find a copy, it is so worth the read. I hope you are managing okay in this fight, which I know is so difficult. Hugs, Nancy

  16. Barrie birch says:

    Hi there Emma my name is Barrie and am 32 and 2 years ago I woz told I had Myloma cancer one ov the yongest in nottingham under 40 and do I know it since findin out I think the hardest thing has been the only 1 my age till I woz told about ur blog. If u need 2 talk about what’s 2 cum or about ot relay just drop me a line on Facebook or email pappab@hotmail.co.uk

  17. Justine says:

    Hi there Emma I’m Justine from Australia! You write like I talk, it’s somehow bittersweet 🙂 I have just been diagnosed with mm & have no idea what’s in store for me. I’m a sole mother to 3 children, 7 months girl, 22 month boy & 6 year old boy. I can’t believe I won’t see them grow up….wondering if I should even start treatment.

    • ejbones says:

      Justine, sorry to hear about your diagnosis.

      For me, there was one option and there remains to be one option and that is to fight. I complain about my treatment, and I doubt it, but I can never imagine myself not fighting. It’s hard. None of this is easy, but I am fairly certain that the lives of the people I love are better because I am fighting. I don’t know how long I will live for, but I wise person once told me that this is the same for everybody, nobody knows ht is around the corner. The odds of our early death is higher, but it is not guaranteed. I hold on to that everyday. I also hope that medicine will improve. I know it will and I also hold on to that everyday. It makes the fight easier.

      One thing I have found to be true since I have been diagnosed, is everybody’s myeloma is different. People’s experiences may be similar, but do not let people tell you exactly how you are going to feel. Side effects may be the same, they might not, you just don’t know and neither do the doctors. Not really. Your illness is your own and you may have to block out the white noise.

      The biggest thing to remember you can fight it.

      I’ll contradict myself. I recommend looking at Alex Bicknell’s blog as well. He speaks a lot of sense and is age appropriate. Which doesn’t always matter, but it may help you.

  18. Justine says:

    Thanks Emma, I seem to be in a black hole of depression right now, tomorrow will hopefully be brighter xx

  19. Good luck not just with treatment but in walking that middle space of having a looming disease. It can make each day more precious or bum you out! Go for enjoying the now!

    Marcy Westerling
    http://livinglydying.com/

  20. Rahul Yadav says:

    Hey Emma, I am Rahul from India, am also 28 only and have just been diagnosed with MM in august 2013…Wish you all the very best..

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: