Monthly Archives: November 2012

Knight Of The Living Dead

It’s Day 5 of the Fifth PADIMAC Cycle. Look at my face. Look at it.

Do you fancy being my knight in shining armour? I’ll pay you back with really fun things in about six months if you just come to my rescue now… I’ll buy a book and ask for more radiotherapy to make it worth your while. Remember, I’ll be skinnier then too.

Sold?

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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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And So It Starts…

… Twelve hours early. Hooray.

I have my good cylinder reserve. I have easy to heat food in the freezer. My bed is made. The flat is clean. EMan is ready. I have ITV mystery dramas. I have helpers at the ready. Just turn off Regina Specktor, it’s not for now.

Let the sleeping commence, as soon as today’s drugs have been administered. Embrace the mental blankness. It’s how the people feel after a session on the source. Or so I recall.

Be strong Jones. It’s making you better. Really.

The paraprotein better go down in 15 days. That’s all I am saying.

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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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Carpet

Somebody asked me when I started to lose my hair whether the process was limited to the hair on my head. I can now confirm that it is not. Patchy.

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If only the steroids did not cause the excess facial hair… Bring on the high dose. Maybe.

The realities of cancer treatment. It’s eye opening. Sorry lads.

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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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A Retro Space

Today is Groundhog Day. Most treatment days are Groundhog days for me. I know the drill and give or take a few hours, everything is the same. I am on repeat. Yesterday, I stupidly forgot to pack my headphones, and it is that tedious, that I had to go to the local electrical goods shop because the prospect of three hours without headphones or conversation was too much to take. It was £20 well spent and I enjoyed the five minutes walk to Tottenham Court Road. I discovered that near a hospital, the general public are more considerate of people with walking sticks.

As I was waiting yesterday, I noticed more of the interior design on the second floor of the centre. Not only do the colours clash, there is a hint of space about the furnishings and the architecture. I am thinking more ‘2001: a Space Odyssey’ than ‘Avatar’ here. The central area looks like a set of 2001, all open spacing with red peculiar shaped chairs. I actually like it. The treatment and the waiting is cumbersome, but I find the space relaxing, especially in the rain and out of the reception area. It would make a good low budget film set, providing the cast and crew are snot free. Perhaps the NHS should consider this for all its hospitals instead of the privatisation of services. They are selling New Scotland Yard, so this must be possible, there are many hospitals. Think about it Jerry.

Back to the now, I have been entertaining myself by taking photographs of the scenery and imagining that I am on a spaceship or in a galaxy far, far away. It really is a time killer and means I have to be slightly inventive with the camera, which means thinking.

Unless you have spent a considerable about of time on the 2s; this could mean nothing.

There is a chance that my entire week’s blogs are going to be like this, if that is true,and it means that if all my thinking and writing is gibberish, I am not depressed. You do not have to read them. They entertain me and that is enough.

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Clearly a spaceship

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Clearly a bunker in space covered in an alien ant farm

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Clearly a distant relation to the book ‘The Hungry Catepillar’

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Clearly an emergency release for the space pod, or maybe the spaceship’s folding bed

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Clearly a head protector for under the astronaut’s helmet and erm, a horn

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Clearly an intelligent alien’s track marks or even more clearly and less far fetched, the floor of our spaceship

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Clearly space foliage eaten by the Ewoks

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Clearly an oxygen tank for babies being cleaned

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Clearly a section of a control panel

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Clearly Darth Vader is dead

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Clearly a section of my spaceship’s ceiling

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Clearly an air vent of sorts, maybe in the toilet

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Clearly an alien’s tree

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Clearly 2001

Right, that killed a good hour. Good work, me. Utter nonsense.

EJB x

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A Journey

My current journey to the hospital is annoying. There are two older ladies of pensionable age, seemingly oblivious to the fact that there is somebody else on the bus. Their conversation, which even my music could not block out, went something like this:

Knee Replacement Lady: It’s just so uncomfortable on here, they don’t seem to think about people with serious problems like me, I’ve just had a knee replacement.

Me: [I smile warmly, head supported by pillow] It won’t be much longer.

Hip Replacement Lady: You’ve just had a knee replacement? I had my hip done three months ago. I disc-o-later my hip. I’ve had three hips.

Knee Replacement Lady: It’s debilitating. It’s been a month and I can’t do anything. It’s so serious.

Hip Replacement Lady: I know. I cannot go outside when it rains. I might disc-o-late my hip again. It’s been three months. It’s too long. It’s life changing. I don’t want another operation. I have had four hips in three weeks.

Knee Replacement Lady: People don’t understand how serious it is. My leg is swollen and I have to keep it straight. I have had to have five blood tests.

Hip Replacement Lady: Well, I had to go in last week as well, it’s too much. I cannot drive… And the doctors don’t tell you anything. No one told me I disc-o-lated my hip in theatre. They told my daughter, but not me.

Knee Replacement Lady: What doctor did you have?

Hip Replacement Lady: The coloured one.

Knee Replacement Lady: Me too.

Hip Replacement Lady: How do you do the injections?

Knee Replacement Lady: The blood thinners? Oh it is awful. The district nurse comes in to do it because I cannot bear it. My daughter faints when she sees a needle. I’m black and blue all over from it.

Hip Replacement Lady: I do my own. They are fine. I don’t need a district nurse. I have my daughters. Where do you have the injections?

Knee Replacement: Oh, just in my arm.

And then the conversation is repeated, with the added bonus of them talking about how much they love ‘Take Me Out’.

Now then, I do not want to take away the fact that the ladies have and are experiencing pain and discomfort, but it is a pain with a foreseeable end. They were in the bus for physiotherapy, I was not. It may be irrational, but I just wanted to interrupt their conversation of whinging to say, ‘try stepping in my young, incurable shoes; it’s no breeze. Oh, and shut up’.

I should probably talk to my counsellor about this next week. It’s my anger and lack of sleep talking. Maybe.

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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The Lesser Of Two Evils🔥

It is that time again, welcome to Cycle Five! Steroids. Yes. Chemotherapy. Yes. Velcade. Double yes.

I dread the week ahead. Correction, the next nine days. I feel slightly guilty for having these thoughts, because I willed for me to go onto a fifth round of PADIMAC. I willed for me to go into the clinic for four days for at least five hours per day, knowing that the treatment will make me feel rotten for the five days following. I know that staying on the trial is the best thing for me, but that does not take away the fact that my treatment is unpleasant. Ever the pragmatist, I am prepared for it. The clean pyjamas are out, the easy to heat meals are in, easy to watch entertainment is on my television and the activities to keep me relatively entertained at the clinic are in my bag.

Even with activities like reading about information management, I am likely to get bored. Two of my three main clinic buddies are still on a working holiday (selfish), and my other clinic buddy actually has a nine-to-five and has previously been taking time off, so boredom is well and truly is on the cards. I am not sure why the rest of my friends have to work; this world is too cruel. I have probably planned too many activities, as well as my scintillating read, I plan to do some writing (never did I think I would be the sort of person to slip that into a conversation), catch up with my chemospondence and chat utter nonsense to the Medically Trained People. I am sure they appreciate it. If only I had my energy in the evening and not the day when I am stuck in the clinic alone.

As I know what is ahead, I made sure that I thoroughly enjoyed my week off. I especially enjoyed my weekend, once I knew that I did not have to wallow in treatment anxiety and pity. I baked, I cooked, I had quality time with my AQ, people farted in front of me and I laughed. I even gave myself a break from the blog, in an attempt to not think about My Myeloma. For most the time it worked. Inevitably though, it creeps in… I enjoy myself with my friends and get into my bed thinking about how I much enjoyed myself and my brain goes “don’t forget you have cancer, your enjoyment is a sham”, or something along those lines and I am back right back down to reality. I will not need to be reminded of this fact this week, but that’s okay because my brain is not going to work properly anyway.

So, let this week commence… Give it to me PADIMAC.

Think paraprotein reduction please.

EJB x

Oh, before I forget, guess who gets to have a pregnancy test today? I just knew it was wrong for me to have all that unprotected sex with randoms last week… Oh well. You live and learn.

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