Monthly Archives: February 2013

Chemo Is A Go

Can I get a high five please?

After a bit of drama yesterday and apprehension this morning, I was seen by a Medically Trained Person who told me that my toothache was a toothache and I could have my treatment today. So, here I am, sitting on the second floor of the Macmillan Centre receiving a litre of liquid, which is a mix of cyclophosphamide (chemotherapy) and saline. To be clear, a litre of liquid administered intravenously is a lot of liquid. Like, a real lot. Two hours worth to be precise and before that, I had two bags of other medicine, which apparently, will help prevent me from vomiting up my dinner later.

This is it. It’s the start. It’s what I have been waiting for for six weeks. Longer. I was devastated yesterday when I thought I was going to have another delay. Right now, all being well, is the beginning of the end of this chapter of My Myeloma. I have waited six months to get to a point where I can see an end, and I can. I don’t want anything to take it away. The drugs are going in me, right now. As sick as I will get from this chemotherapy, I simply do not care. I don’t care how sick I am going to get during the transplant. I just want it to end. And today, is a massive, massive step. It is here.

I have never been so happy to have an IV. See?

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Now, let the powers keep me safe and infection free so I can adhere to my word processed timetable.

I just want it to end.

EJB x

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The Menopause

Now then, I have discovered that when one is aware that they may experience certain symptoms, they inevitably experience those symptoms, especially if the drug is new. For me, I am never really sure if the symptoms are real or imagined. I hope they are real, otherwise, I’m getting all hot and bothered over nothing. Literally.

With that in mind, I certainly hope that I am going through the menopause. Does the drug work even work this fast? Who knows? To be frank, I don’t even know if I am injecting it properly. I am following the manual…

Yesterday, I walked a few hundred yards to get the bus and I was sweating. In the last few days in fact I have had quite a few Own Personal Summers. I really hope that by the end of the week I am not sweating profusely in the 8 degree heat. The look does not work on a large person. I do not want to look like a stereotype please, okay?

As for the mood. It’s hard to tell. Throughout this ordeal I have good and bad days, but yesterday morning I felt like there was a mood enhancer in my flat. Even listening to Cat Stevens really, really loudly didn’t help. Today, I feel fine, full of witticisms that only I find funny.

I am also not, you know, in need of a certain something. The men of this world are safe, I’m not going to jump you anymore. Well, I wouldn’t have jumped you anyway, I probably would have just taken my knickers off.

These symptoms are on temporary though, so, be prepared.

Isn’t medicine great?

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Pride

I am constantly asking myself whether I conduct myself in a manner in which I can be proud of. It’s a question I asked myself before I had myeloma, but I have experienced, with myeloma, there are many more occasions where there is the possibility of me acting like a big old twit.

On the whole, I think I have handled My Myeloma pretty well and I hope that I will continue to do so. Though, in a world where everything is exaggerated, so too are my actions and this gives me reason to think. Every time I have an uncontrollable crying session, like yesterday when I was told that my treatment may be delayed, I am ashamed. I’m ashamed that I could not be stronger and hide my fears, weakness and disappointment. I am not proud when I argue with my friends. I could always handle a situation better, but it’s a struggle when my mind is all over the place. I can find no pride in the times I have lost my temper with the daycare nurses for delays with my treatment, accept at NHNN, they deserved my wrath.

The thing is, if I want things to be normal and my life to continue, I’m going to make mistakes and questionable decisions. I am going to upset people and I am going to upset myself. Although I would like it to, cancer does not make me invisible. Even superheroes are flawed. I know this because I have seen the movies.

That said, there are many daily things that I do find pride in. During PADIMAC, any poo was worthy of a photo. On Saturday, I used the Hoover. And today? Well, thus far, I am so proud of myself that I was able to produce more than three litres of piss in the last 24 hours. I filled a bottle.

My self worth ain’t going anywhere. Hear that Fake Menopause?

EJB x

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Toothache 😁

I have what is commonly known as a toothache. The cause of my problem is not a karmic response to the questionable morality of my decisions this week, no, the cause is the wisdom tooth. Right bottom to be precise.

This little bugger has been at it for two days. I am finding it difficult to eat, which lets face it, is no bad thing. I like to think that it is also the reason why I have not slept well these two nights since. Everybody can sympathise with a toothache I am sure.

As much as my tooth is a pain in my bum, I kind of like it. It’s the sort of pain that I can recognise from my life pre August 2012. My Myeloma is not the reason I am in discomfort and it is a discomfort that everybody can understand.

It was comforting at first, but now, I wouldn’t mind if it went away just a bit, so that I could suck my thumb. I suppose I am also worried that something mundane, like the toothache, could delay my treatment. There can be no delays, I am ready for it all start.

Bring on Tuesday. Toothache or no toothache.

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Prick

I am sure that there are many people out there who associate being poked by a foreign object a good thing. Maybe even a fun thing, depending on what the foreign object is attached to. In the world of medicine, and specifically to me, in the world of cancer treatment, being poked by a foreign object is not usually considered a pleasurable experience. Fortunately for me, thus far in my journey, the poking has been undertaken by Medically Trained People.

Not anymore.

Next week I will start a course of treatment whereby I have to inject myself everyday for ten days. The gift that is self medicating started early for me, just a few minutes ago to be precise. I have asked to receive an extra medicine not usually given to patients preparing for a transplant. I have asked for a drug that I am sure is really technical and stuff, but essentially, the drug puts my body into a kind of fake menopause. I simply cannot wait for the side effects from that to kick in. I understand that one of the side effects will make it difficult for me to get a good old poking the way nature initially intended. That though, is by the by. Nature sucks. Medical advancements and Vaseline are where it is at.

What is praying on my mind, right now, is pricks. The pricks of a needle. It was not a good thing for Sleeping Beauty was it? Well, a handsome prince did rescue her at the end, but generally, the lesson I gained from that particular fairy tale was that needles are bad. Real bad.

I know there are many people in this world who have to inject themselves everyday. Knowing this fact, meant that I had to find the will to do my injections myself. It is hardly fair of me to ask others to do the injections for me, as daunting as it may be for me to stand in my kitchen with a needle and syringe aimed at my gut. It would be a lie if I said that injecting myself did not scare me. Anybody who saw me build up the courage to do the first injection would see that I was afraid. I made up the medicine, which by the way was no easy feat, then stood with a timer, targeting the needle, then removing it, then targeting it, and then removing it, then targeting it, and then removing it before I could stab myself. It was not an attractive sight for I was pinching my flab with my left hand and directing the syringe with the right.

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A complicated medical procedure

As it turned out, it was not that bad. I am sure as the week progresses, I will find it easier and easier.

It’ll never be a trip to the cinema.

EJB x

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Firsts

After my diagnosis, I found that my life has become a series of firsts. Simple, and not so simple things I did in my life pre-myeloma, I have had to build up to doing again in a body that is cancerous and painful.

The firsts or milestones have been slow coming, and they have been made more difficult by my physical limitations. That in itself then creates a whole heap of psychological worries. Some have come about intentionally through my dogged determination and some have been a pleasant surprise. These successes are always a pleasant reminder that I am improving. I am not talking about the medicine, I do not know whether that is improving and it is best not to think about that. What I mean is that I am improving and with that comes my growing confidence and independence.

Some may consider my milestones to be minor, but each one is an indication that I am not, will not be wholly defined by My Myeloma.

The first time I had a bath, the first time I walked up a flight of stairs, the first time I went to the cinema, the first time I got on a bus, the first time I could use the oven unaided, the first time I could walk into town and do my own shopping, the first time I went into work, the first time I had a pint, the first time I did a starfish in my bed, the first time I went to the BFI.

All of it equates to some normality and recognition of something I feared was lost.

There is still a way to go. I am looking forward to the day I can change my own bedding, but I know that that day will come.

Each time I experience something for the first time all over again, I feel stronger, regardless of whether my decision to do it was medically or mentally sound. And most the time, I wonder what the big deal was in the first place.

With that in mind, last night I slept using just two pillows. It was a first.

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Hand Washing

A myeloma sufferer nearing their transplant date has many things to worry about. I can say this with the greatest authority, for I am a myeloma sufferer nearing her transplant date.

My greatest worry at the moment is not the 2% mortality rate, the high probability of mouth ulcers and lava like shit or the weight loss. Oh no, my greatest worry is how the hell I am going to remember to wash my hands in my new immune system-less body.

I have been told that I need to wash my hands after I have been out in public or handled money, before I prepare food, before I eat food and apparently after I have gone to the potty. Okay, I knew the last one already, and almost always did it.

In my adult life, I have strongly believed that one should expose themselves to some germs. I thought it made me strong. Sure, I washed my hands after I disposed of my waste or handled raw chicken, but that was my limit. Anticipating a world where I have to wash my hands after I shake somebody else’s does not sound like a fun one.

I am a thumb sucker. I love the comfort I get from it, but it’s not going to taste very nice covered in antibacterial hand wash is it?

Am I going to have to start opening doors with my elbows? Should I wear a mask in public? How much does hand wash cost? Is there a cancer benefit for people who are medically required to wash their hands more? How dry will they get from all this washing? Will I need a bigger handbag to accommodate the hand wash and moisturiser I’ll have to cart about with me? And what if I wanted to taste somebody else’s lollipop? Will I have to buy my own?

I have never licked a door handle, but knowing that I can now never lick a door handle seems unfair. I feel like I have missed out.

It’s a can of dirty worms.

Fortunately, I am pragmatic. If I need to wash my hands like an obsessive, then I will. I have enrolled myself on an intensive hand washing course. Apparently, every time you wash your hands you have to wash between the fingers and the wrist with soap for at least 10 seconds. I will find out whether I passed in June.

Wish me luck. I’m reaching for a First.

EJB x

*PUBLIC SERVICE ANNOUNCEMENT*
Antibacterial hand wash is not a sufficient substitute for soap and water. Medically Trained People are advised to use it twice before washing. True story.

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Blogging

Way back when, when I decided to write this blog I had two reasons. The first and the main one was to keep my loved ones informed of my progress as I went through my treatment, thus reducing the number of personal appearances of the Cancer Roadshow. The second, was to give me an opportunity to organise my thoughts and process what was happening to me. Overtime, a third reason came along, and that was to tell others who I do not know about my experience of having myeloma and how, as a single 28 year old with her life ahead of her, I cope with this life changing disease. I am all about cancer awareness. The latter point became my soul focus for a while. Professional Cancer Patient. That’s me. I blame the never ending vat of wit.

The act of writing a blog and publicising your feelings is strange. I have opened up my world and my brain to a host of people who do not know me and I have opened up to those that do, more than I would have ever done before I had myeloma. People offer me advice and I find it difficult to take it because just as I have said My Myeloma is my own, so too is my life. I want to give something with my blog, but rarely do I want to take anything back. I am fiercely dogmatic and there is not much that can be done about that. I truly mean no offence when I say this, it is just the way I am.

These days, the first and third reasons why I do this are still relevant, but the main reason I write my blog is to maintain my mental health. I am ever the pragmatist and writing this protects me. Unwittingly, it has become part of my treatment. My blog, EJ Bones, is cathartic. It allows me to acknowledge the bad thoughts and then throw them away into cyberspace. I cannot function with this, My Myeloma, if I hold onto every single negative thought. I need to release them, and as somebody who is emotionally retarded, this is the easiest way.

Well, it was the easiest way when the things that were tormenting me were directly related to my treatment. I am so aware now of what myeloma is and what to expect, that there is nothing new there for me to dwell on. Sure, I still dwell on the fact that this is happening and the fact that I may not have babies, but this is not new and I have my own tools to deal with this. What is new, and what is pressing, as I have discovered during my limbo, is the things about me that have changed because of My Myeloma. My personality and my relationships. These thoughts are difficult to vocalise to anybody, in person or on a blog, because ultimately, they do not just effect me. They relate to the people who are in my life and over the last month I have found myself in a quandary. Do I continue to write about my problems as openly as I have done, knowing that the negative thoughts in my mind may upset those I love, or do I hold it in? Some would say that this is what my counselling is for, but it is not frequent enough. I am also, surprisingly, independent. I find this blog to be a way for me to cling onto to parts of my independence, when I now need assistance with so many other things to get by. When I am upset, I want to deal with it in a day, two days tops. If I do not manage it quickly, it will manifest and grow, much like, I imagine, a tumour would. My thoughts can be toxic and the sooner they are discarded the better it is for me and consequently, better it is for those around me.

I am conscious of those in my Support Network. I have mentioned individuals in my support network on here before, I frequently do, but rarely do I use their names, because it is my decision to write this blog and it is not fair for me to offer them up for critique, like I do myself.

This is a dilemma. I have tried not writing it down and holding on to it, but this does not work. It pushes me to breaking point. I have tried to share it with other people in my network and this does not work either, for those select few have to deal with copious amounts of tears and snot, accompanied by a pinch of hysteria. It doesn’t work. In order for me to stay my stoic best, I need to process and mange my thoughts on here regardless of the consequences. My blog is my mental rubbish bin. I am too far into my journey to find a new way.

*******

So then, getting ready for my release. And I do not mean farting…

I am afraid. I am afraid that I will resent the reaction to My Myeloma by some of my friends and family far longer than I will experience this incarnation of My Myeloma. I am afraid that for the minority who I feel have neglected me or not fully grasped the reality of what has happened to me, that our friendships will forever be tainted. We will still be friends, but I will always remember that they were not there for me when I needed them. I fear that I will remember this, for much longer than I will remember those from the expected and unexpected quarters who have shown me such overwhelming support that I feel sick with pride that those people are my friends. I am afraid that I will not be able to forgive my friends who have made flippant comments in my presence, that have hurt me, regardless of whether they were directed at me. I am afraid that I will always be jealous of my friends for living a life that I cannot live. I am afraid that I will alway resent those whose problems in life, that are no where near the realm of thinking about the high probability of premature death, of those whose problems are cosmetic. I am afraid that I will always think that a person asking repeated questions about my treatment, or forgetting about my treatment, is a sign that they do not care. I am afraid that I will never be the same, that I am losing my empathy towards others. I am afraid that because My Myeloma is the leading man in my life that I am becoming dull and irrelevant. I fear that my want for normality and need for compassion do not marry and that this will drive people away. I am afraid that at times, I feel both suffocated and lonely and again, my reaction to this will push those I am clinging onto further away.

Most of all, I am afraid that things will never be the same. I know that they won’t be. I am dealing with that, but the reality of it means that I may leave people behind or they will leave me behind. I can feel one or two friendship slowly ebb away already and this scares me.

*******

And now, I can breathe.

EJB x

P.S. Before some of you in The Network panic. I really do feel fine; this is cathartic remember?

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Mountains and Molehills

I thought that my time off would be easy. My body is not undergoing any treatment, my energy levels are high and I am no going to the Centre every day. It sounds heavenly and I am sure that there are many people who think I am fine. The truth is, that this time has been far from easy.

I cannot really say how difficult I found my diagnosis and PADIMAC, I know I did, this blog tells me so…. I can say that I have found this limbo equally as difficult, though fortunately, over the last week, I have been able to come to terms with the challenges I have faced, both actual and manifested.

A bit of time off is a gift. It’s true in general life, but when one is undergoing cancer treatment, a bit of time whilst you are feeling well is more than welcome. A bit of time. Six weeks off is too long. I constantly feel trapped, I feel trapped in my flat, trapped by my body, trapped by the schedule and trapped by my situation. I have gone from having a full time job and an active social life pre cancer, followed by a hefty treatment schedule, to nothing. I wake up everyday and find motivation difficult. While somedays I do have plans, this limbo has seen me spend a lot of time by myself. More time than I care for. I am no mathematician, but I wager that on average, I spend 80% of my days alone. As boring as PADIMAC was, I saw more people than I do now. I had drivers, nurses and Macmillan Support Workers to bug when I had conversation aplenty. I’d store it up and unleash the beast. In the last six weeks, I have found myself in frequent conversation with myself. We get on well, but it is easy for us to create dilemmas. Us Geminis really are drama queens.

I find myself now, yearning for the end to this volume of My Myeloma. It’s more of a fantasy. I spend this limbo fantasying about all the things I am going to do when the myeloma is sleeping. I look forward to things. I have one target right now and that is not making sure I get out of bed before midday or ensuring that I have some structure to my days, the target is just to be normal. Try as I might, this time, although it offers glimpses of normality, it doesn’t offer me everything. I am restricted by my mobility, by my funds, by the schedule and my My Myeloma. I want everything. I am excited about the day when things get back to my new normal. EJ plus myeloma. I’ll make it work, I just cannot make it work right now.

I make plans in my head and these I look forward to. I look forward to a life where the main protagonist is not medicine. Medically, at this moment in time, I have nothing to worry about because nothing is happening. Now, if there is something or I perceive there to be something afoot that can effect my plans and my return to normality, I am devastated. I mean, snot everywhere devastated. Things that previously would have been a minor hindrance or detail, represent the end of something gigantic and dashed hopes. Predictably, this makes me susceptible to making a mountain out of a molehill.

I do not think I am creating mountains at his current moment, but two weeks ago I was. Whether it was a change to my job or my insecurities at what My Myeloma has done to my relationships, the effect is exaggerated in my mind because I have nothing else to focus on. More often than not, things are quickly resolved and become mere folly. I need to learn that the sooner I vocalise them the better. I need to not let things stew, but I do like a stew, just ask my slow cooker. It’s just difficult when there is nothing else…

Fortunately, the end of his limbo is nigh. The time when my transplant is my priority is looming and frankly, we cannot wait.

EJBs x

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Short Bed Hair

Apparently, this is what happens to short hair if your body allows you to toss and turn in your sleep.

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It’s a whole new experience. And before you say anything, yes, I forgot to wash my makeup off last night.

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