Tag Archives: Macmillan Cancer Support

Just Giving

Charities are great. 

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Personally, or should that read, ‘selfishly’, I am particularly fond of the cancer ones. Macmillan, Cancer Research, Myeloma UK and the rebooted Bloodwise (once known as Leukaemia and Lymphoma Research), have all contributed in some way to my treatment and all round, general well-being. You should all love them and donate your disposable income to them for that reason alone. I am, however, pretty sure that as special as I think I am, I am not an isolated case when it comes to the positive impact these charities can have. I  regularly find myself torn as to which one deserves the most EJ love… Bring  other charities into the giving equation and I am stumped.

A charity, by definition is an organisation designed to help and raise money for those in need. Walk down any high street, sit on any mode of public transport, watch television the old fashioned way or simply look at any type of social media, and you will see that there are a lot of people out there in need. A lot of people. I don’t want to shock you, but there are many bad things in this world. ‘Bad Things’ is the official term, I have spent weeks work shopping, to cover all the horrific, life changing and slightly irritating things that could ever possibly happen to a living thing. 

If all the shopping centres, buses,  adverts featuring music by Kate Bush and a phone number, door knockers and status updates are true, there exists a charity for almost all the Bad Things that can and do happen everyday. Illness, death, poverty, war, famine, the environment, dogs, cats, dogs and cats. 

The list is endless and can appear, relentless or at the very least, saturated.

It’s a common scene, when a person cannot make it down a street without being pestered by a person donning a brightly coloured anorak and a fake smile, rattling a money box or dangly a clipboard in your face. As it is now a mere 80 days until Christmas, we are in peak charity (over)drive. It’s the blitz. Everybody, everything, even those dogs and cats, need more money.

On the other hand in my pocket, the fact that so many charities do exist, is moving. It is reassuring to know that there are many people in this fair land, unlike me, who care about other beings enough to invest their  time and money to the betterment of others. The Bad Things are being tackled by Good Things. I tried to find out how many charities there are in the UK, and I stopped when I read there were over 16,000. 16,000? Many, many Bad Things. This is an aside, but I  was surprised to learn that cancer charities only accounted for two of the top ten highest earning charities in the UK.

I have reasoned, whilst starting this new paragraph, that it is not as simple as Good (the charities) verses Bad (the bad things). Charities must have to compete with each other. If charity really goes begin at home people, then how on earth do people decide which individual charities to donate their hard earned, and limited cash to? Maybe people don’t think, and they donate as and when they feel backed into a corner; I know that is what I used to do.

It’s not just a question of cash either, charities need investment in time, knowledge and understanding. It could be a result of my constant drugged out haze, but I cannot begin to fathom how charities find a voice loud enough to be able to endure, when there are so many charities to choose from, who are equally and unequally vying for your attention. 

My charitable attention is selfishly directed to illness, and a certain illness at that. I would think you a fool if you could not deduce the illness of which I speak. I do not know how able bodied and able minded people decide. In my pre cancer world, I would donate out of guilt, empathy, a good advertising campaign, office related sponsorship or various combinations of the above.  With 16,00 charities in the UK alone, it makes for an extremely competitive in the Third Sector. Sorry, I meant cutthroat. 

In the last few years, maybe because I am more sensitive to campaigns, I have seen charities become more inventive when it comes to fundraising. The Ice Bucket challenge, Coffee mornings, make up free selfies, awareness days, Movember, girls’ nights in; it seems charities have to think outside of the box to garner attention and take in the big bucks. Charities are a business and just as in business, despite the noble origins, it appears to me, a dog-eat-dog world. 

Last year, when people were scrambling to poor ice over their heads for ALS, I remember reading various comments online that said it was unfair that the charity was getting so much attention and money, when there were so many other, needier charities to donate to. To clarify, I am paraphrasing other people’s thoughts and these are not my own (Mamma Jones asked me to do that, in case people misconstrue my intentions). Anyway, at the time, when I read these commentaries, I did not see why it had to be an ‘either/or’ situation. Those comments felt like cause shaming, or playground antics, squabbling over what is the worst (and thus the best) ailment.

Yesterday, I saw an example of this (at least that is how my sensitive soul read it) on the book they call Face. I read a status update, the kind of copy and paste job that people are challenged to post in the hope that it goes viral. The cause may be worthy, but I deemed the technique they used to spread their message as insensitive, flawed and ignorant. The update read:

October is Infant/Pregnancy Loss and SIDS awareness month! Let’s take some time to remember….[I have edited the middle]… Make this your status if you or somebody you know has lost a baby. The majority of you won’t do it, because unlike cancer, baby loss is still a taboo subject. Break the silence. In memory of all lost.’

Unlike cancer

Call me opinionated, but I think it is unacceptable to pit one horrific and life changing thing against another, wholly unconnected, horrific and life changing thing in order to gain awareness. I cannot begin to comprehend what it is like for a person to lose their baby. It is indeed something in need of discussion and awareness, especially when it comes to how the NHS cares for the parents who have had to endure such a loss. But, whoever originated the above campaign, in my mind at least, lost their credibility, the moment they typed ‘cancer’. The two are not comparable. End of discussion.*

Do people perceive cancer to hog too much of the public sympathy, and thus too much of the limelight? Cancer may well recieve more publicity and support in comparison to other ‘Bad Things’, but it does not mean it is incorrect to publicise or care about it. Cancer charities only accounted for two of the ten highest earning charities in the UK last year, and yet I understand that it can at times, seem like it is prioritised or sits on an indescribable pedestal. But, I wake up everyday and think ‘cancer’, so I am biased. A friend once argued with me because they believed cancer gained more sympathy than mental illness. It’s the sort of attitude that creates some sort of artificial hierarchy, where there does not need to be one. Nay, there should not be one. 

Causes should be judged on their own and stand alone. Charity should be about giving not chastising, and yet the latter will always exist. Of course, we cannot individually give to all charities, but they should be able to exist side by side… Charities are about helping people after all.

And so, in the run up to the festive season when you can see nothing but a rainbow of coloured anoraks and you are bombarded with donation requests, please don’t get angry. The answer is easy, just give to who you want to give to and say ‘no’ to the others. It’s simple maths. 

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As for the statement that cancer is no longer a ‘taboo’ subject; that is another, lengthy, blog entirely…. Until then, I will simply say that my personal experience would contradict this. Strongly contradict it.

EJB x

P.S. This is not foray into the complex world of giving, I was opinionated in 2013 too. https://ejbones.wordpress.com/2013/03/19/the-charity-drives/

* I am aware of the irony that, that was not the end of my discussion.

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An Altruistic Act Of Friendship

Attention, Attention, Attention!

It has finally happened.

I am not talking about me losing my hair, that was a week ago, but finally, after months of careful planning and fundraising, the dear sweet, Iana Peppiatt has finally shaved off his hair. His long, hippy like locks are no more. They have been deposited in a plastic bag in my kitchen bin. I believe what started out as the ramblings of a drunken man upset that his friend had been diagnosed with cancer, has ended with him losing his hair safety net and I believe he is far more attractive as a result. As one of the many spectators, privy to Wednesday night’s events commented, Ian is now going to get ‘so much fanny’. Not my words obviously, I would never be so crude.

So, the Big Head Shave was on Wednesday night. All the dignity I unexpectedly saved with how I did my deed was, rightly lost on Ian’s experience. Well, it was for charity after all. As noted, we had spectators, there was a live video feed, some awesome banter, alcohol and I made nibbles. I bloody love nibbles.

I hope Ian does not mind me saying this, but in the hour or so prior to the Big Head Shave, he was nervous. Probably the most nervous I have ever seen him, and I have known him for a good few years. At this time, I will admit, that I could have been nicer to him, but it was just too much fun winding him up…

He started the evening looking like this:

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And ended up looking like this:

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I was given the honours of firstly cutting the mane and then shaving it. I did not relish the prospect of doing this, but my when I started, my, did I enjoy myself. Housemate had to assist a little because I was probably being a little too delicate around the ears. Sure, I also got a little sweaty. The wool dress was probably a bad outfit choice for such a high pressure role involving a number of stray hairs, but I will remember that for the next time I am put in the position where I am responsible for removing one of my friend’s defining features. If you want to see just how much I enjoyed myself, take a peak at this…

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If you are tempted to see more, then the video footage is still available http://www.ustream.tv/recorded/30483575?utm_campaign=www.facebook.com&utm_source=30483575&utm_medium=social… One viewer commented that it was “The best TV ever”. Praise indeed. It is recommended viewing for anybody who thinks that shaving off your hair is not a big deal. It is. And the beauty of what happened on Wednesday, is that Ian did not need to do it. Ian did it to raise money, but also to make me feel better about what has happened to me. Way back when in October when we first started talking about it as I was losing those first few strands of hair and I was terrified, it gave me the strength to get on with it. Watching us reach our target on the Just Giving page, seemed somehow to make some sense of the madness that was happening around me, a madness that I had no control over. On Wednesday, when I watched Ian lose his hair, well, when I personally cut off that surprisingly soft ponytail, it did make me feel better. I do not know whether my feelings were selfish, but it did. Sod the charity, seeing somebody I know go through what I have had to go through, made me feel better and that includes being a witness to his fear beforehand. I found an inexplicably amount of comfort in his kindness and I will never be able to properly express to Ian what his sacrifice means to me. I do not think I would have been strong enough to do that for another person. I constantly think about a conversation I had with some friends in July, when my pain had started and I did not know why, and for some reason I said that I would never lose my hair for anything less than £20,000. How circumstances change.

Regardless of how it made me feel, it was for charity and Ian has smashed his target of £1000 and he is currently sitting on a total of £1345 all for Macmillan Cancer Support, who, I must say have supported me so wonderfully, as part of my Support Network during this hair raising experience. Even on Thursday, when I rocked up to the clinic in one of my wigs, their comments made me feel a little bit more confident in my synthetic hair. So, for the last time, even though our hair is gone, you can still donate. He shaved off his hair for goodness sake! http://www.justgiving.com/shavingmyhairwithEJBones And I do, truly thank those who have donated already. Your generosity has been the dogs bollocks.

I will finish this blog, again with a massive thank you to Ian. Ian who for so many years I have associated with his long hair. Defined sometimes. I have only known him with long hair, but the thing is, ten minutes after it happened, I felt like he had always had short hair. His altruistic good deed, showed me that hair is just hair and that his being and his personally remained in spite of him not having that moulting mane. I guess that this also applies to me, and boy, did that made me feel better. As big of a deal as it is for us personally, it, the hair, did not define us. And that is nice to know.

Ian Peppiatt, you are such a good egg. And for old time’s sake, here is a picture of us in our former glory.

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EJB x

P.S. Donate.

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Sex Education

It is a well known fact that I am a Single Lady. I was a single lady before my diagnosis and I am a single lady after it. It’s probably for the best, if I was attached before my diagnosis, that person would be a bit of an arse if they dumped me when they found out that my body was a mess and I was going to go bald. Somedays I wished there was an actual significant other to help me sleep, comfort me during the dark times and who says night night. Sure, Housemate says goodnight and good morning, but I am not his type, and most the time it is through my bedroom door. I cannot see amour happening any time soon, for I do not go anywhere and let’s be honest, I have bigger fish to fry. For the day love does return to my life in a requited form, Macmillan Cancer Support have thoughtfully and kindly produced a leaflet. It is no laughing matter, okay?

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Unfortunately, there is not a chapter in here about Myeloma and living with bone lesions and a squishy spine. I assume, My Myeloma and me just have to read between the lines.

One thing this leaflet is keen to point out is that intimacy is important. Stroking. I think that was kind of a given, but it’s good to know that it is still important for those of us suffering from cancer. December is usually a good time of the year for me in this regard, but not this year. The Wan Birthday curse is over. I will just have to snuggle up to EMan (the teddy bear) and at least this year I also have my pregnancy pillow to recreate having another body in my bed. Perhaps I should purchase a hot water bottle.

I understand that is generally considered uncouth to discuss such things publicly, but I can do what I want. I have cancer. Dear Dad, do not read any further, you will not like it. Plus Macmillan Cancer Support think it is a good idea, and I do what they advise in most circumstances. Though I did stop myself from picking up the guidance on an early death yesterday, we are not there yet.

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So, let us start at the very beginning. Below are some useful tips for the Singles.

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Questionable fertility? Check. Reduced lifespan? Check. A change in body? Check. I’m a catch. I’m a catch! Is anybody interested? If you are, at least you know in all likelihood, you’ll be set free from the commitment by your 60s. Maybe not, there could be a miracle. The allogenic transplant can be a cure in some rare instances according to the gospel of Wikipedia.

If we can get by that hurdle, this considerate guidance is rather helpful. Do take note.

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This will clearly require a change in tack on my part.

I don’t want to make anybody take pity on me, but I think the third paragraph is noteworthy. I have interpreted it as therapeutic. I am pretty sure I could still produce a good snog when my mouth does not taste of tin. That’ll be next week by the way.

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That is it for now, there are more pages, but I have picked out the sections relevant to me.

As ever, I am pleased to me able to bring to you the realities of being a twenty something with cancer. Desperation.

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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Infamous

I bloody love attention seeking, so nothing made me happier this morning when I was told that I was famous. By famous, what was meant was that a photograph of me had appeared in the UCLH staff newsletter. Proper fame then. The photograph was taken when I was interviewed back in Cycle Three for ‘Keeping Britain Alive’. It is evident from my face, that I had no idea that the photograph was being taken. I look concerned and worried. I believe, if memory serves, the man with the white hair was talking about early diagnosis through primary care, so it was right that I look like I am constipated.

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