Category Archives: Thanks

Acknowledgements

WARNING – This blog contains some uncharacteristic musings

I have forgotten to do something. It is not that I have forgotten to do something exactly, it’s just that I do not know how to do it. I want and I think I need to express my gratitude to my people for carrying me through the last 15 months. I know that I would not have been able to get to this current point, this remission, if it were not for the many people working away behind the scenes. It sounds trite perhaps, to say that I would not have been able to do it were it not for the support I have received, but it is true. In case you were wondering, this is going to get overly sentimental. Get a bucket.. Sure, I am
frequently pleased when people congratulate me on my strength and stoicism, but that it a facade. Any face I put on, or actual strength I have, derives from the people I have had and still have around. I have doubted it, and I have doubted them, make no mistake of that, but it is true. I imagine it is a feeling similar to the feeling the historical character Harry Potter had when he fought the evil Voldemort with his dead loved ones standing by his side. Like that, only my loved ones are not dead.

It does feel somewhat odd thanking people for something that is not over. I just have a time out, and I will continue to struggle and wobble over the myeloma mountains. I will have to continue to draw strength and perspective from those around me for as long as I have left, because the myeloma makes it so. This acknowledgement then, really is just a timely reminder to say that I still need you; it is attention seeking really.

I would be the first person to admit that My Myeloma has not been an easy ride for those around me. It has been hard and at times, traumatic. In case you were wondering, this may include exaggerations too. As much as I tried not to make it so, My Myeloma became the focus of all my relationships. One friend told me recently that people, like me, needed a break from myeloma and by that, they occasionally needed a break from me because the myeloma dominated so much, for so long. Now, I might not whole heartedly agree with the logic, but I understand the sentiment. Myeloma is tiresome. Supporting a weak, depressed sick person, or patient if you must, is tiresome and it is not always fun. I like being self obsessed more than the next person, but not to this degree. People have been there for me, more than I have them and this upsets me greatly. I really did try to make this not the case, but it was inevitable. I need to acknowledge in a forum other than in my head, that My Myeloma has made me less of the friend I wish I could be.

And yet, I look up now, and people are still here and for the most part, I really do not know why. My relationships may have changed, but there is not one person who was here 16 months ago, who is not here now. In fact, I feel like I have picked up a few extras along the way. Say what you want about myeloma and I feel like I have said everything, it really does bring people together. It also makes you feel as lonely as hell, but this is a nice blog. I look at a lot of people now and my internal monologue says slushy things that only I should hear, whilst I fight a desire to hug them tightly.

I do not know how to thank people for sticking by me. Prior to My Myeloma, I rarely expressed my feelings towards others, in anyway but my presence. I believed that my loyalty was enough for my friendships to endure. It may still be enough now, but My Myeloma has made me lose perspective. Medals would be too much, right? This blog is too much, right?
I considered thanking people individually, but then I remembered that although I have a cancer with no cure, doing so, telling people individually what they mean to me, would embarrass me, and I dare say it would embarrass them too, and I really should not be drinking the amount of alcohol required to lubricate those conversations. I thought about listing them on here, explaining the individual role they have had in making me get out of bed, but that too would not have worked, because inevitably I would miss people out or over thank one person and not another, thus causing an argument over something as pure as a Forever Friends bear, and as one friend pointed out at some point during this journey, friendship with My Myeloma and me is not competition.

At times during my first chapter I have felt let down, misunderstood and alone; and I have been confused by absence and silences. Now, however, the overwhelming feelings towards my family and friends are positive ones. I truly could not have done it without you, from your grand gestures to daily presence. So, please enjoy, my thank you;

I thank you for all of it. I thank you for not running away when my heart turned from stone. I thank you for phoning me every day and being my second mum. I thank you for being my mum. I thank you for understanding the medicine. I thank you for letting me be mean to you. I thank you for the sacrifices you have made. I thank you for always knowing exactly the right thing to say, and also for not knowing what to say. I thank you for waking me up every morning and being a pillar of strength for me even if you did not know that is what you were doing. I thank you for telling me when I was being an arse and shouting at me when I do not listen. I thank you for being normal and treating me normally. I thank you for coming to the hospital with me for treatment or waiting with me for my transport. I thank you for loyalty. I thank you for buying me milk and walking it to my flat. I thank you for offering to do anything. I thank you for force feeding me soup. I also thank you for all the cooked dinners. I thank you for all the books you gave me, that I have still not been able to read. I thank you for not letting a bit of myeloma and chemotherapy stop you from telling me off for over filling the bin. I thank you for playing Words With Friends everyday. I thank you for taking my mind off it. I thank you for taking me out. I thank you for always coming to me and sitting on my sofa for hours. I thank you for cheering me up. I thank you for my beautiful television. I thank you for all the legally acquired viewing. I thank you for showing me that family is important and I thank you for making your presence known. I thank you for continuing to ring despite me never answering my phone or returning your call. I thank you for reading the blog. I thank you for changing my bedding and hoovering my room. I thank you for taking me to the football. I thank you for letting me be petty. I thank you for listening. I thank you for acting as a protective barrier in a crowd. I thank you for everything and anything I may have missed above.

Most of all, I just want to thank you for being there, in all your different guises, in all your different ways. I also, most vehemently, ask you not to go anywhere. In case you were in any doubt.

I am very pleased to have met you.

Now, if you excuse me, I think I have to vomit.

EJB x

Advertisements
Tagged , , , , , , , , , ,

A Season Of Thanks

I am constantly thanking my friends and family for their support and generosity as I continue with my fight; some of them will even be lucky enough to get some gooey messages during this festive season. I do apologise for this in advance. I can’t help it though, I have cancer.

I am more surprised by the kindness of people whom I do not know as well, whether they are friends of friends, the parents of my friends or my colleagues who send me an email when I have had good news, or who just let me know that I am in their thoughts, or who buy me lunch and keep be abreast of vital work information.

Last week, two such people were incredibly thoughtful and gave me presents. I am a self loving sort of gal, and thus, I am a fan of the present.

The first present, I was given on Tuesday, and I believe was very much purchased because of my lifelong love of the Barratt’s Dip Dab. I love them. They are so much better than the Barratt’s Sherbet Fountain. I ask you, does anybody really need liquorice in their lives if it is not a Rizla? The gift in question was a Dip Dab mug containing three Dip Dabs. To date, I have eaten one. The photograph below is a photograph of me enjoying my mug in my bed. Nobody needs to see a photograph of me sucking a lollipop.

20121217-095532.jpg

I wrote a lovely email thanking Sally for my delightful gift, but it bounced back because our work email system is either stupid or secure, depending on your perspective. So, Sally, this is me thanking you.

The next gift, was in Christmas wrapping, but I just could not help myself. I could also smell the lavender oozing through the red tissue paper and I was intrigued. Inside the red tissue paper was a handmade scented pillow. Fortunately, one of my favourite smells, after EMan’s paw, is lavender. I promptly placed the pillow in my room, which meant that when I awoke on Sunday morning, my room smelt of lavender and not the usual Emma mould. Bonus!

20121217-100637.jpg

The best bit about Lisa’s present was the branding. As well as loving myself, I love my name in all its various forms, so the back of the pillow just tipped me over the edge.

20121217-100829.jpg

So, to Sally, Lisa, Ray Winstone and all the other people who have never met EMan, I thank you. You brighten my twilight.

EJB x

Tagged , , , ,

The Hostess

Today, I have successfully shown myself that if the time is right, I am well rested and driven, that I, Miss Emma Jane Jones can still be a hostess. I bloody love being a hostess. Today, as much as it was about having my friends round for Christmas nibbles, it was about proving to myself that this part of me, can still exist, even if I have to try a little bit harder than I did in my pre myeloma days. In your face myeloma.

I have said previously how much I like organised fun and and how much I love Christmas. Put the two together and I am in heaven. Well not heaven, I don’t want to be in heaven. Let’s just say I am in a place where one has a lot of fun. So, My Christmas Nibbles, with Housemate on the music was a delight.

Everybody who turned up, made the six hours of preparation yesterday and four hours today worthwhile. Actually, baking is always worthwhile, but it was better than that. Everybody who turned up made my week. I can rarely go to them, so the fact so many came to me makes me feel all warm and fuzzy inside and smug. The thought that they only came because of My Myeloma has been pushed out of my mind. Maybe it was a factor, but not the only factor, even for the really hungover ones. My feet are also buzzing, but I think that is just because I stood up too long.

I go to bed this evening happy. Even after everybody left, I was alone and had to take my evening dose of morphine. I suppose that this could just be the mulled wine talking.

I have even followed my instructions and left the cleaning until the morning, well, I have left the dishes.

I could list everything I made, but that would be boring. You can just look at some of the pictures.

20121216-001043.jpg

20121216-001049.jpg

20121216-001055.jpg

Now for sleep. I fear I will pay for it tomorrow, my body aches all over, but I am positive that if that is the case, it was worth it.

Seasons greetings.

EJB x

Tagged , , , , , ,

Bed

Yes, this really is a blog about my bed. Cosy, cosy, broken bed.

Last night, I got into my clean bed and settled on down for a goodnight’s sleep. And a goodnight’s sleep was had. I would not have been able to get into my clean bed if it were not for my friends.

It embarrasses me to admit that I do not have the strength to strip and make my bed. I also do not have the strength to vacuum up my shedding mane. Both points are also frustrating. My embarrassment was such that it took me three weeks to ask for help. As with most things, I didn’t ask one person, I advertised my weakness of a social networking site known as Facebook.

The bed stripping is usually done by Mamma Jones, but she has not been to the flat for a while. Essentially then, what I am trying to tell you, is that I have been lying in a pit for the last week. A pit covered in crumbs and an unfortunately positioned chocolate stain on the under sheet .

Yep, I am still talking about my bed. It is amazing what sort of things cause stress these days.

My advert worked. I received three kind offers and accepted one based on geographical distance to the flat, and thus less of an effort to the friend in question. My knight in shining armour came to the flat yesterday evening wearing a deerstalker. My he was dashing. He chivalrously changed my bedding whilst I did my best impression of a back seat driver (I really do have a lot of cushions, it’s a construction).

Hmmm, Lenor.

He then left and I got into my cosy, cosy bed. It smelt and felt so good. In fact, it felt so good, I stayed in bed until 13:00hrs. I am a lazy bum.

I really cannot wait to get back in it. I am making myself wait.

20121103-193205.jpg

Tagged , , , ,

Princess

There was a period, earlier in my treatment, when I was overwhelmed with all the beautiful bunches of flowers I was sent from the UK’s finest establishments and beyond. These have now, quite rightly stopped. I mean it couldn’t go on forever and I suppose people had to stop showering me with attention. Who needs attention? Not me, I am a wallflower. That said, I really did get so goddamn excited when these beauties were hand delivered to my flat on Sunday, fresh from Columbia Road Flower Market.

I am only going to say this once, my name is Emma Jane Jones and I am a spoilt princess. Fact.

Tagged , , , ,

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

Tagged , , , , ,

Baby Steps

It may be a hoax or some sort of mental trickery, but I appear to feel slightly better than I did yesterday. I am realistic, I know that I am not cured of my doubt, I am just feeling better. I suspect that there are three reasons for this;

1/ Writing the blog is cathartic. It is the main reason why I started it in the first place. Being able to write down my thoughts and feelings, good or bad, and articulating it, makes My Myeloma clearer in my mind. Writing my blog makes me feel better. Just like on the 20 August, emailing my friends and colleagues helped me process what had just been thrown my way.

2/ I have spent the last two days doing very little. Exceptions to that include a TV box set and Words With Friends.

3/ Following my post yesterday, I woke up this morning to emails and messages from people reminding me of their support and this has continued throughout the day. I in turn, continue, in this area of my life at least, to be incredibly lucky. Lucky that I have an amazing Support Network around me. My favourite message of the day, comes from a person who was wise enough to hire me six years ago. She has copied my writing style, which I enjoyed thoroughly. The email made me guffaw and thus that is why I am sharing it with you now…

Its just the next phase I reckon, and you will come away from this even stronger (which is quite a scary thought but true nonetheless), but no doubt go through this lots of times. Things could be worse remember, and just in case you don’t believe that I have listed 11 – 10 would just be predictable. There are lots more though, and remember I don’t do feelings either so they are objective, and not gushing/made up. They would make a good vision statement in a business plan I reckon.

1. You could be a minger. You’re not. Nuff said.

2. You could have thin lips and a non expressive face which wouldn’t help should the hair decide to leave your head. Instead you have an interesting and attractive face which can so work red lipstick (for which I am seriously jealous) and looks cool in quirky wigs and chunky jewellery (most of us would look like Bet Lynch on a bad day)

3. You have amazing friends and family. Nuff said. Actually, not nuff said, they are really bloody amazing aren’t they. And interesting. I’m waiting for Mama Jones to start her own blog, And to understand why Middlesborough is called Middlesborough. I assume its not her real name, but then why pick one that takes so long to type, and is so open to errors.

4. You are witty – truly truly witty.

5. You can write (better than lots of people that get paid for it to be fair)

6. You are intelligent. Very.

7. You are the kind of person that people want to be around – you make people happy.

8. You are interesting. And interested (which counts for a lot)

9. You can cook/bake and no doubt make things with your hands. A regular Kirsty I reckon (actually she can work the red lipstick thing too). You remind me a bit of her come to think of it.

10. You are strong…super strong actually (but human, which means you have to learn not to be strong and let others be strong for you now and again)

11. With or without MM you are a bit of a catch for the right person (although he has to be much of the above to keep up with you….other than working the red lipstick perhaps….although you do live in London so perhaps he will work the red lipstick).

End of the Party Political Broadcast in support of EJB.

Tagged , , ,

Long Term Memory (An Update On ‘Aspiration’)

This morning I posted a tale about a trip to Thailand when I was 17 years old. If you have not seen it, here’s the link https://ejbones.wordpress.com/2012/10/07/aspiration/.

Well, after this, Rachael sent me some photographs and they prove that my long term memory is still in full working order. In Your Face Side Effects. In. Your. Face.

Now, for a giggle, below is a photograph of me aged 17 on James Bond Island. Enjoy. 😸😛

20121007-143655.jpg

20121007-143708.jpg

Oh, Rachael just sent me so more, they are not connected to the story, but I find them amusing.

20121007-145109.jpg

20121007-145127.jpg

20121007-145101.jpg

Tagged ,

Aspiration

Last night, in search of some light entertainment I decided to watch Roger Moore’s second outing as James Bond, ‘The Man With The Golden Gun’. This is turn reminded me of being 17 years old on holiday with my friend Rachael and her family in Thailand.* This in turn reminded me that since that trip 11 years ago, Rachael’s dad has been diagnosed with Multiple Myeloma. Huw was diagnosed seven years ago. This in turn reminded me of his amazing strength and that of his family, in battling his disease and the obstacles it has thrown their way. This in turn made me think about how wonderful Rachael has been since my diagnosis; understanding and explaining to me the new terminology I have had to learn. This in turn made be feel thankful and humbled that Rachael’s brother-in-law, Neil, has signed up to do a triathlon next September to raise money for Myeloma UK on behalf of Huw and me.

Basically, by watching ‘The Man With The Golden Gun’, I was reminded that I have something to aspire to. They have shown me how to do it. I know I can replicate Rachael’s family’s strength and positivity. I know my family is already there and I do believe that I can beat this. I just need to remember this on my Bad Days.

* If you are not a James Bond fan and are wondering how I jumped from the ninth ‘official’ James Bond movie to a holiday in Thailand, let me enlighten you. It is time for a FILM FACT! 🎥💡 Scaramanga (played with gusto by Christopher Lee) the movie’s villain, had a hideout and said hideout was an island and said island was filmed on location on Khao Phing Kan in Thailand. We visited said island during our trip way back when in 2001 and, as a fan of the movies and James Bond, I was most excited. Overly excited. So excited that I can tell you that on that day, I was wearing a pair of blue denim look linen shorts (complete with drawstring waist) with a red and white horizontally striped t-shirt with white collar and my breasts were supported by a halter neck tankini underneath the t-shirt. The majority of the outfit was from New Look, to note, not the tankini, I need propersupport. It would be fair to say, I was not comfortable with fashion back then.

Tagged ,

Appreciated

I have said ‘appreciated’ a lot this week. I think it is because I am bored of saying ‘thank you’. Next week, I might try and use ‘gratitude’, the week after that, I’ll be going for ‘obliged’. Friends and family, be warned, as you continue to be so lovely and generous, I will continue to find new ways to show my thanks.

Many of the recipients of my appreciation, have already been thanked on the blog this week, so I will not repeat myself. I am fortunate enough to have documented my thanks so I cannot forget in my drug induced haze that I have done so… conversations on the other hand are a different matter completely.

Today my appreciation has to go to Middlesborough and her boyfriend, let’s call him, um… Jack, who made at least a 90 minute detour and drove me back to Mamma Jones’ from London en route to (surprise, surprise) Middlesborough. This was very kind indeed and also saved me from carrying a bag that was too, too heavy through Kings Cross. I suppose I repaid them somewhat, as they have now seen Eastgate, Glinton and the River Welland. I am embarrassed by how nice it was for them to drive to the bottom of Eastgate. When I am better….

20121005-193735.jpg

This week’s appreciation should also go to my friends from the 7s who ventured to N1 and not the Buckingham Arms for beer last night, to Housemate for returning from his holiday, to the people who contacted me to check I was mentally stable after my Bad Day, to GKD for cooking me brunch from Whole Foods, to George for offering to clean my oven, to Mamma Jones for buying me hummus and linseed and to Big Sister just because.

As for the rest of you who continue to see me and text me and email me and think about me, it is also very much appreciated.

Merci beaucoup,
EJB x

Tagged ,
%d bloggers like this: