Tag Archives: Support Network

30,099

Today, as I write this blog, I have had 30,099 views since I set up EJBones – My Myeloma on 22 August.

This total does not break records, it does not make my words viral and it is not going to change the world. It does make me feel a hell of a lot better. I still hope that my words and my story can help others, whether you are a fellow cancer sufferer, somebody who knows somebody suffering from cancer or just somebody who knows me and does not know what to say.

I estimate that I have about 200 regular followers, some of you I know, and some of you I don’t. In your own way, you make this little journey of mine that little bit easier. The comments here and there that see me through the darker times and your appreciation of some of my more random musings help me keep hold of the best bits of my personality that otherwise would get lost in Chemo Brain. Or you reading this resulting in one less edition of the Cancer Roadshow, makes the trips out or in that little less hard to take. Or whether it is just knowing that there are at least 200 people out there in cyberspace willing me to get better. Every little helps. It keeps my head up, when all it wants to do is hide.

So, this is just a quick note from me to you, to thank you for logging into my electronic diary, wherever you are on this planet, and participating in this rather horrible war my body has decided to wage against me. I have every intention to keep going with this until I hear the magic words and I promise that I will continue to throw in the odd bit of smut, just so I can liven up your days.

Thanks again. You are the bomb.

EJB x

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Self Preservation

Yesterday I had a productive counselling session. They are always productive, but I just thought this one was particularly useful. Let all of us go to counselling. The world would be a better place.

Firstly, my counsellor has given me license to be selfish, accept I am not allowed to call it that. Apparently, if I start thinking that me not answering my phone or replying to a text message because I am too tired, depressed, to have guests or just enjoying myself, is selfish and something innately evil, I will feel guilty about it, upset myself and wind up exhausting myself. With the added hormones I am taking and the general trauma of having cancer, this is not a good thing, but it is a situation I frequently find myself in. If I have interpreted yesterday’s discussion correctly, I have too few healthy days to worry about upsetting others, although I always do. My counsellor says that now is the time to be looking after me. I have been trying to learn this now for three months and it is slowly sinking in. Of course, she is not the only person to tell me this, many people have mostly men. In my counsellor’s opinion, Housemate’s views on this particular matter are a good gauge on how I should behave. That gives him a lot of power; when I said this to her, she appeared to find it amusing.

That said, I do feel ill mannered if I do not contact people, especially when I expect them to contact me. I expect a lot of people to contact me. I need it. Welcome to the one way friendship. The fact of the matter is that sometimes, mentally or physically, I am not capable of doing it, doing the roadshow and reliving everything shit that has happened in the weeks previous. It is too exhausting and too painful. I can understand somebody being upset with me if I am not there for them to talk to me about their problems when they are sad. The key thing to remember is that I always make contact, just on my schedule. I do not understand someone being upset because I am not available for them to talk to me about my problems. I live with this everyday and somedays, I cope by trying not to remind myself that I have myeloma. The key thing to remember is that I will always make contact, just on a schedule that is not of my making. Do not begrudge me this.

Secondly, we discussed the unknown and how I should be dealing with it or not, as the case may be. Pretty much, she agreed that I am managing it as best I can at the moment, in manageable, bite size chunks. I cannot fret over what is going to happen in six months or next month, with my treatment, my hair, my pay and my life. It is out of my control. Put it another way, I am currently living within this three week cycle. At this moment in time, I do not know what is going to be happening to me past Day 21 of this cycle, meaning I cannot plan anything and manage the what ifs. I do know what is going to happen to me now. I know that I will experience the worst fatigue I have ever known in three days time and that this will last a few days accompanied by emotions heightened by my steroids, I know that my immune system will be low the week afterwards and then I will feel better. This is what I can reasonably manage and manage I will. Anything else will be dealt with later, I just need to keep reminding myself of this. No fretting Emma Jane Jones… No!

Now, to the talking next point, which I am rather fond of, be warned, it contains a metaphor of sorts. Four months ago, if somebody had said this to me, I might have laughed in their face. I certainly would have done so behind their back. Not any more apparently.. I hope that this does not make you spit your tea at your computer screen in guffaw. If it does, please try and remember it in case you ever see dark times. Right then, are you ready for softy softly? It’s coming… Deep breath.

My counsellor says that I have two cylinders. On one side, I have the fatigue and depression cylinder and on the other, I have my happiness cylinder. On Day 1 of my cycle, the former will be empty (realistically, there might me a dribble of gas leftover). The latter will be full because I have enjoyed the time off that Days 11-21 offer and lived as much as I can in those ten days. The happiness cylinder then acts as a reserve as I battle through the worst of PADIMAC and will slowly empty, ready to be refilled from Day 11 onwards. The bad cylinder works in reverse, that cheeky bugger will fill up in the next few weeks and then from Day 11 onwards, I have to make sure I am happy enough, so it cannot help but deplete. I find this beyond reassuring. I have cancer, you cannot laugh.

Lastly, I mentioned to my counsellor that I find issues and potential issues which are not myeloma related, are magnified, the importance and weight are magnified in my brain. I cannot help but worry and stress over things and because my life is My Myeloma, everything that is not the cancer, seems more important somehow. I have already mentioned above how I should manage these dark thoughts, whether I do in all cases is a different matter. A great deal of it is irrational; did I say something stupid? will people think I am stupid? should I have used ‘in’ instead of ‘for’? what is he doing? why haven’t I seen them for five weeks? is it because I am no fun now? The list goes on. As long as the lights are not out, I can manage these. I struggle over people thinking that I am rude or ungrateful. I hope that I am neither and if I appear to be, it is not intentional.

I have to remember that for now, I am number one, oh and everything should be taken and dealt with in bite size chunks. It’s the only way to live.

The counselling really is a good idea.

Head High.

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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