Monthly Archives: January 2014

Wearisome Street

There is not a visit to the Macmillan Cancer Centre or it’s mother, UCH, that I do not talk myself through my sheer hatred of Tottenham Court Road and its neighbour, Euston Road. In this, I am really including the entire area, and the surrounding streets of University Street, Huntley Street, Grafton Way and Gower Street. Sure, some of the roads display some interesting architecture, but to me, this area of London Town represents my myeloma prison, which is monotonous and ugly and grey.

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Image 1: Macmillan Motel

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Image 2: Pensive Palace

It has not always been this way, I think perhaps, until my transplant, I saw Tottenham Court Road in a similar way to the way I see a certain area of Victoria. I saw it like a workplace and I think I almost enjoyed the familiarity of it. I do not recall being bored of it or associating it with great misery and sadness. July came, when I was not allowed to leave Tottenham Court Road and with that small rule and neutropenia, came loathing, unadulterated loathing.

I do not care that Tottenham Court Road has a Gregg’s Bakery that stocks the Gregsnut, nor do I care that there is a cafe that makes Mamma Jones’ favourite banana and orange drink and I almost do not care that it has one of the greatest homeware shops to have walked the planet since Woolworths. I am in no way a fan of any of the dozen pubs I have frequented in my lifetime.

Five days during a heat wave limiting myself to a 0.5 mile radius followed by 12 days looking at the same scene out of a window was enough to ruin it for me. Nothing in this area of London will ever truly be enjoyable now, even if I were in Stringfellows objectifying men. I travel there for treatment and that is it.

I have visited the prison twice this week; yesterday for treatment and on Monday, I had counselling. Both inward journeys were accompanied by my usual thoughts of abhorrence, as was yesterday’s outward journey until I reached Kings Cross Station when more positive connotations, like the best hot pork roll this side of the Mississippi crept into my mind. My outward journey on Monday however, broke from my norm.

If truth be told, which is quite possibly the most annoying phrase to feature in the modern English language, I surprised myself. I am hardly a beacon of positivity and smiles when it comes to My Myeloma these days, something which was touched upon during my appointment that day. As I left the hospital, I was annoyed because my bus did not stop at the bus stop on Tottenham Court Road because TFL decided the best place for a multi bus stop was at a busy main junction preventing buses from stopping, so I had to walk up to the next stop on Euston Road. Trust me, if you are not familiar with the area, the bus stop in question l, is uglier than the one on Tottenham Court Road, looking out at the natural beauty that is an underpass. I would like you to imagine the face I had on, full of evil thoughts and two chins. As I waited however for the 73, I looked up and I had an epiphany. Looking straight ahead gave me an underpass, whilst looking up gave me an epiphany. Deep.

This is what I saw:

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It might mean nothing to you, but that building is also know as University College Hospital.

After having spent an hour talking about ways I can combat the negative, I saw a positive in UCH’s tower. I saw the window I looked out of for the worst 11 days of my life, longing to be standing on the street waiting for a bus heading to Dalston, and I realised, I was actually standing on the street waiting for a bus to Dalston. And there it was in that moment, I accepted that I have come a long way and that I am doing well. People tell me this, but looking up at that window on the road I hate, I felt well off. It is a brittle feeling, because I fear the bad, but in that moment, I was relieved to be in remission and it was kind of nice. I was probably listening to something rousing.

Seriously though, so deep.

I still bloody hate that area though. It is way gross.

EJB x

P.S. I am am aware that I have also referred to my flat as a prison. I thought I need to acknowledge that fact. I have been doing a lot of time.

A Bad Vein Day

Long term cancer patients get ‘bad veins’. Their veins hide, and need gentle coaxing, heat and occasionally, a good old spanking. It is not a new phenomena, nor is it one I have not encountered before and thus not spoken about before. It is, however, one that I have not had to think about for a long time.

My current world does not require much thought of veins, and I assume that this makes me normal because I did an imaginary survey and most people do not give much thought to their veins either, unless one is being vain (geddit?) and fearsome of the their bulging hand tunnels. I do not not have bulging hand tunnels.

Most of my time now, the Medically Trained People want to take stuff out rather than put stuff in, which is much, much easier and is merely a short, sharp scratch and a permanent bruise on my left arm. Yesterday, stuff needed to go in, bone juice to be precise, and my veins, without a doubt, did not want it. It took three, rather painful attempts to get the cannula in, which surprised me because six weeks ago, the needle went in with the greatest of ease. That’s right, cannulas still involve a needle and a tube.

For me, it was a reminder that this is part of my life now; needles, bloods, delays and pain. It was also a rather timely reminder that my current treatment is a vast improvement on my previous treatments, when a cannula was not a rare occurrence. Way back when, I was always sporting bruises on my arms, always worried that there would not be a suitable vein and I would experience pain, and I would always get ill from what had gone in. That does not happen anymore.

So, yesterday, for a brief moment, I allowed myself go rejoice in my situation, and all because this happened:

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And yes, I did keep the cotton wool on for my journey home; it ensured I was given a seat on the 73 bus.

EJB x

P.S. In six weeks time, I will definitely seek out my favourite nursing assistant for this task. She has the magic touch, but I have never said it to her face so as not to induce undue pressure.

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The Status Quo

It has come to my attention that I have been quite remiss when it comes to talking about my health of late. It is not because I am absolutely bored rigid from talking about my body. I am now all about my feelings and that, bless you, is all I have been sharing of late. A lot of people do not know that it is very important to be in touch with one’s emotions, I am not one of them. I am sure, to an outsider, my relationship with my thoughts can come across as some sort of self indulgent codswallop; these outsiders obviously have no idea what they are talking about. Fluffy is important, equal to the reality.

The truth is, apart from my permanent, self diagnosed, severe IBS, from a medical view point, every thing is *okay*. I do not want to jinx it. On Thursday, I was told that was I doing “incredibly well”. Take from that what you wish, I have, and some of that may have come with a hint of paranoia. I assume that comment came with the caveat of ‘all things considering’.

Since the 7 November, I have two clinic appointments and these, if we remove the pressure I place on them, have been relatively nondescript. In December’s I was asked whether I was going to have an allograft (donor) transplant when It comes back as, if that is the case (it is), the Medically Trained People will plan for it. Personally, I found this sort of talk premature and I did not appreciate it. The rest of the my clinic talk has revolved around Velcade side effects, MRI results and my ongoing fatigue. The latter irritates the whatsit out of me, but I am still told that it is normal. I do not want to be normal. I want to be above average and not spend my weekends in bed because I overdid it in the week. I also do not want to be embarrassed about not having the energy to get out of bed. I am told this will improve. I suppose it is, because the need to stay in bed of a morning is diminishing.

I have tackled a cold or two, it is difficult to be precise because they go on for so long, distinguishing between the two and finding the start and finish, is a big fat waste of energy. The last one/two lasted for a cool three-four weeks, grew into a chest infection with a return of my childhood asthma and the requirement of an x-ray. This too, I am told is normal, although I view it as setback. My long sniffles did mean that I had to see the Medically Trained People three more times in between my appointments and including my long awaited return to my GP.

I get very special treatment at my GPs now. I would tell you about it, but I fear I would make you jealous. There, my general practitioner informed me that I have to have a very low threshold when it comes to contacting them. Everybody I have mentioned this to have sought clarification on this statement and thus, I took it to mean that they want me to phone them all the time. I will not of course, but maybe the next time I get a cough that sounds like I am vomiting, I will not wait for a week and a temperature before I tell anybody.

As things stand, because I really feel people need to know exactly what is happening in my life, I am still receiving Velcade once a fortnight and will continue to do so for the foreseeable future. Apart from the bowel issues, the injection makes me extremely tired in the 24 hours after the injection and this then will be proceeded by a period of insomnia. I have the occasional dizzy spell and the familiar desire to chop of my left arm when I am not doing anything else. The hope is that these side effects do not worsen, because that, I am sure, would be bad on so many levels. My energy levels are improving, albeit very slowly, and I pick up bugs quicker than I can walk a quarter of a mile. I have a paraprotein level of 5. I have been referred to a physiotherapist, whose job it will be to ease some of the pain I experience every live long day and then allow me to reduce my daily dose of 60mg morphine sulphate. And finally, I am almost certain that I have now gone through the menopause and I am, by default infertile. How do I almost certainly know this? Well, I have not had to visit a certain aisle in Boots since August for a start. I still get hot flushes, but these come in weekly waves and I a drenched (quite literally) at the moment. I will find out for certain on Valentine’s Day, I cannot wait. I also think I need to see a chiropodist but this has absolutely nothing to do with having myeloma, and I will probably never speak of my toe tails again.

EJB x

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Surrender

There comes a time in everybody’s life when they have to surrender. They have to give in. Their hands are tied. They have to retreat. They are getting ready to wash their hands.

I am at such a point. I am at the end of my tether. I am waving the white flag.

I am finally ready for the laxative.

Please do not be disappointed. I no longer have the time to be constipated. Whilst we are on the subject, I do not have the time for the other thing either.

Yesterday, I realised after spending two hours on a ceramic bowl sweating through my nightie, that I was fighting a losing battle. I can recall my 17 month long reason for not taking laxatives but my enemy has changed, and I do not think my weapons are strong enough. I am too busy to remember to prepare and eat linseed everyday. The fortnightly velcade injection is preventing me from forming a routine, and it is keeping me on my toes with its unpredictable attacks. For two months, I have been unable to take my eye off the ball due to a very real fear of being caught short. I am fighting on my own. In this fight, it is not fair for me to slip my bowel woes into conversations with Housemate when he returns from work. Nobody needs to know. Big Sister is also not prepared for my observation on the frequency and odour of my wind. It is not right.

Enough is enough. My head is bowed.

The truth is, there is not enough time between my injections for my body to regulate and there is too little time between my injections for my body to get used to the cleaning product. It is torture or at least any torture I have ever known. Two months of it.

So, with the treaty signed I really home with these laxatives that I, Emma Jane Jones will be able to start making regular, erm, reparations.

EJBx

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Planes, Trains and Automobiles

Sometime ago, I got the number 30 bus from Hackney Town Hall to the stop nearest to my flat, and as I stepped onto the curb on the road they call Ball, I remember how elated I felt, because finally, after months of Mamma Jones driving me places, taxis and the Patient Transport Service, I had regained some of the independence I lost with myeloma. Many months have passed, over a year’s worth in fact, since that happy time, and I can now without any hesitation that I no longer feel that way when indecently travel. The novelty has well and truly warn off. The adrenaline I felt that day has long been superseded by apprehension. Apprehensive and loathing to be precise.

Now, with the PTS a distant memory, any travel I undertake no longer feels a matter of routine as it should. Travel is an effort. It is an effort for a number of reasons, not least because I have become a lazy bum who loathes strangers, particularly the sort of stranger who does not know what a ‘Priority Seat’ means. It is a bummer, especially now I am getting out and about and attempting to enjoy #londonlife.

I fear the unknown with travel. I fear what will happen if I get tired whilst I am doing it, I fear people bashing me and not letting me sit down, I fear that I cannot always be independent when I am doing it, I fear that my face will not be able to disguise how uncomfortable some seats are for me, I fear falling over and I fear what will happen if my mode of public transport breaking down. These fears go through my head every time I travel and thus it is the reason why my current, preferred and used mode of transport is a black cab. Trust me, taxis are an expensive way to travel, but it saves my precious energy from worrying about being forced into delivering my much mentally rehearsed, vitriolic speech to people who fail to surrender the priority seat when it is needed. The speech by the way is awesome, designed to make the recipient go home and flush their head down their toilet with their mouth open. Sometimes, I admit, it can go too far and include a certain word that is not ladylike and I am working on that. Ignorant norfolkers.

I have had the time to dwell over my ability to travel and I have come up with certain rules to reduce my fear and manage my hatred of humankind and they are as follows:

🚌 Do not travel during rush hour
🚌 Do not leave the flat without my stick
🚌 Do not get on a bus with any form of luggage
🚌 Never go to the top deck of a bus, because you cannot, and on the rare occasions you have done it, you have paid for it instantly and then well into the following day
🚌 Never stand when a vehicle is in motion
🚌 Prior to travel, if concentration is proving impossible and the bagS below the eye have turned a deeper shade of purple, throw money at the problem
🚌 Avoid the aisle seat, as turning corners can really be treacherous when you are sitting next to somebody equally as large as you are
🚌 Always be polite to those under the employment of the travel company, always, and if this includes saying ‘hello’ and ‘thank you’ to the bus driver then so be it, it could lead to a free upgrade
🚌 If disaster strikes, ring somebody and talk incredibly loudly about the fact you have myeloma which is a cancer with no cure

Some of these rules are easier to follow than others, and it is on the bus where I find myself becoming a rebel. Not a rebel as such, because in no way, is it enjoyable.

In my mind, buses are the most dangerous and troublesome form of transport and nothing TFL can tell me will convince me otherwise. Buses are dangerous for many reasons, they were dangerous before I knew they were dangerous. If I knew what I know now, in early August 2012, I would never have stood up on a bus as it was breaking and thus I would not have ended up clutching a lamppost on Shaftesbury Avenue crying and too shy to ask the policeman walking past me to call an ambulance. Now, being the know it all I have become, I resist the temptation to stand up whilst a bus is in motion as noted above. Bus drivers, unfortunately, are not privy to my rules, and they frequently drive their big red vehicles before I am safely in my seat. I find this most inconsiderate. At least I have now worked up the courage to tell the person next to me that I will not stand up to let them out until the bus has come to a complete stop; it is always met with confusion. I do not get on with luggage at all because I am not agile and any lifting has to be saved for the train, in the event that I can find nobody to assist me or if the train is busy. That is also a consideration I have and one I faces and flailed today.

My main issue however is with the public. On the buses (and they could be getting a bad reputation because I use them the most), on the train and on the tube… My impression, which of course is skewed, is that people ignore those with a disability, unless you have a visibility disability or a blue rinse. I was once asked to get out of my non-priority seat by a man in front of me in a priority seat to allow an older lady sans stick to sit. I said no. On another occasion, I walked into a bus outside UCLH with a bald head and a large bag saying pharmacy, and asked for a seat and nobody got up. I asked again and nobody got up. More generally I am encountered by competing eyes looking at other like minded seated people, wishing that they win in the competition of whose manners kick in last. It is a headache and one that I fret over again and again. Two years ago, I wager I was one of them. Actually, I was not because I was a top deck sort of gal.

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Sod that, give me a badge

I said once that my life is full of new challenges now, and this my friends is one of the greatest practical ones I have facing me, and it is one that I should face everyday but sometimes, the worry and effort get the the better of me. Home is safe. Taxis are comfortable.

There is one mode of transport of which I would not complain about (apart from pain from sitting and sitting leg room) and for that, I wait with breath that is baited. Seriously though, can somebody please just put me on a plane.

✈️

EJB x

P.S. Some may call this attention seeking. I call it preservation.

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Armour

From the point I was diagnosed I entered a strange sort of twilight zone in which, whilst my body could not be protected, my mental state was, or at least defended. Personally, I put up several barriers to protect me from harm, and others, well, they were very kind. It was journey, and in remission, I find that I am running on fumes. It’s a new twilight zone.

Any personality flaw, any indiscretion no longer exists when you have cancer, at least, nobody makes you aware of it. You become angelic. Any previous flaw, any previous negative in your personality is erased. One may be petty, one may be needy, but when you have cancer, it’s forgotten, because having cancer, and being treated for it is difficult. Such a tragedy creates amnesia and we, cancer patients that is, become the most perfect people to have ever walked the planet. Mos def, mofos. We are definitely not human. We are special. We are special because nobody deserves this, especially the nice ones.

Our bravery, thus needs kid gloves. We need special treatment and we need protection. It’s a thought and feeling that is steadfast. We’re brave and we’re special and we are respected. Cancer patients cannot and do not have flaws. Just look at a high profile deceased cancer sufferer, may she rest in peace. Our sins are forgotten and we are enshrined in kindness and support.

It took a long time for me to get used to people treating me differently to the way they treated me before 17 August 2012, but acclimatise I did (apart from the head tilt and when speak talk to me like I am seven). With the beauty of hindsight, I see that I needed it. It became my armour and offered some respite from the negative thoughts in my head. I needed people to be considerate to my situation, I didn’t need them to be consumed by it, but I needed, and appreciated the understanding I got. I see now that it empowered me. The lengths people went to, to make me feel like me, were, in fact priceless. I see that now.

To the untrained or uneducated eye depending on how you look at it, I do not have cancer anymore. I am in remission. I have gone back to normal. I am not EJB, I am EJJ again and only that. Such people are wrong of course, I still have cancer. I may be in remission, but my cancer will come back. There is no may about this, it will come back and that is something I am still trying to understand and struggle with.

Since the news spread amongst my adoring public that I am in remission, I have seen a shift in attitude towards me. The lovely, permanently frilly and overly kind demeanour I experienced for 15 months has been replaced by something else, perhaps something more honest. I have discovered in remission, that one does not get the same level of comfort and support, associated with full blown cancer. You are no longer the brave old soul, fighting for the greater good. The respect is no longer universal. The protective bubble of niceness shrinks. Whilst the majority of people will understand that you are not a benefit cheat, tricking the public out of their well earned tax Sterling, some, will treat you like you have robbed them of something, but you will not know what.

On a harmless level, I have noticed people thinking that I will automatically have the energy levels I had once before, that there has been a flick of a switch and now everything can go back to the way it was before My Myeloma. It is an approach that does not help me. I understand the logic in terms of ‘ moving on’, but it does not help my recovery to be treated like that 15 months did not happen. Those 15 months left a mark, and not a very confident one.

Sadly, I have also discovered that some shifts in attitude are not as easy to get over. It seems that for some, the word, ‘remission’ has been a chance to lift whatever facade has been in place since I was diagnosed. Remission means the public does not have to be nice to me every minute of everyday, and that I can be treated like everybody else. I have seen a negativity appear that I am no longer acquainted with.

I like to think that most people who lived to the ‘R’ word, get there quicker than I did. For those lucky types, they have less time to become accustomed to the level of treatment of which I first spoke, from those around them. They only felt like princesses, or princes if I am catering for all, for a period of months, whilst their lives were irreplaceably shaken to the core . I, on the other hand, had 15 months of such treatment and 15 months to get used to it. That 15 months removed my amour, but had grown pretty thick during my 20s.

My Remission returned me to the real world, but without the protection I had when I was last in it. It’s a scary and uncertain place.

The truth is, I am not always a nice person. I can be moody, I can say the wrong thing, like the sound of my own voice and I hold dear my own opinions. At least that is what I recall from my pre myeloma life. My remission has forced me to look at this because other people have deemed it an acceptable time to remind me. Yet another thing for the paranoid treasure box. This reminder, can also be viewed as payback, and it comes in many forms. It could come in the form of a pack like attempt of silent treatment also known as middle aged bullying, or it could come in the forming of shouting, or in passive aggressive text messages. All these things, have made me reflect and made me wonder whether, I deserve to be kicked when I am down, whether I deserved to be in remission. Trust me, this is a black hole.

With or without cancer, I am human. I have good and I have bad. I would like one of these more than the other, but I am sure, on this subject, beauty is in the eye of the beholder. Personally, I have spent the weeks post transplant, reviewing my good and my bad, because that is what I need to do and am expected to do by all those who supported me during my dark times.

It’s a path full of dead ends. I am never going to be satisfied.

I do not understand it what has happened. I do not understand that remission was some sort of truth serum. All the anger or nastiness that has come my way post remission confuses me. It makes me doubt myself and how I managed being diagnosed and being in treatment. In my fairytale head they could be taking their anger at myeloma out on me, but that would be delusional. The truth is, as much of a leap as this sounds, I feel like this negativity changes the journey I have been on. I feel like I was lied to and I feel like I lied to myself when I thought everybody cared and supported me. I feel like it takes away the success of my remission, and it diminishes the hard work it took to get me to this point and the reasons why I fought so hard to get here.

It also represents a deep misunderstanding about how difficult that 15 months was. I did not get here intact, and I think that is punishment enough. Not knowing what ‘here’ is, is also a bitter pill to take. I do not not need to be punished again. I want to celebrate, but instead, I feel like I am losing a battle.

I know that my world cannot be sugarcoated forever, but I was unprepared for the change that has come. There isn’t a Macmillan leaflet about it you see.

It has left me feeling weak and I am not sure when I will be able to get back on my feet to metaphorically kick all my haters in the nuts, and what I mean by that, is not let it bother me. Right now, I would not say boo to a goose.

EJB x

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Separates

You know that feeling when you wake up knowing exactly what you are going to wear that day and said outfit is going to be the best outfit you have ever worn in your life and not only that, it will be the best outfit anybody else has ever seen? Well, that is exactly how I felt up opening my eyes this morning. I was going to wear a dress and I was going to look hot. H-O-T hot. I was very excited and pleased to be giving this gift to the world.

And then I remembered…

Today was a day I had to wear separates. The Medically Trained People made it so. Not only did I have to wear separates, but I also had to wear something with an elasticated waist. It was at that point I knew the day was going to be a let down.* I had not planned for this when my eyes were closed. I was going to have to look daggy. I was also going to have to have a bone marrow biopsy. My outfit upset me more.

I know it is a price one has to pay on Biopsy Day, at least on Velcade Days I do not have to lower my being to elasticated and ‘comfy’, I just begrudge it.

Nobody warns you when they tell you everything else about it, that myeloma dictates your dress, even, occasionally, forcing one to become sartorially challenged. At least once a fortnight, I dress for myeloma and not for me. Imagine that. It has been 17 months, and still, every time it happens, the few times it happens you understand, it smarts. It really smarts.

Oh, and I really cannot believe that it has been six months and four days since my transplant.

EJB x

* except for the fact that I was accompanied to my biopsy by two fine ladies and a foetus, and had a scone, I love scones.

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An Exercise In Paranoia

When it comes to my illness, I am constantly on hyper alert for bad things happening. It’s not really an alert, I now expect bad things to happen. It did not used to be this way, except if you count the time I went to the doctor because I had a cough that I thought was lung cancer, which subsequently turned out to be myeloma. That old chestnut.

These days though, if I experience any change to my body, I fear the worst. I easily convince myself that the worst is coming. My favourite fear, is the thrice weekly belief that the pain I get in my head when I lean to the left is a brain tumour. Let us rue the day somebody said the words ‘secondary cancer’ to me.

The paranoia usually starts from the simplest of things and then, over a period of time, it will slowly spiral out of control to the point where it is all I can think about, am reunited with insomnia and have the constant sensation of needing a poo. I have a perfect example of this mania, which I am going to share with you now, because I am sitting on a train and I have the time and inclination to do so. Enjoy.

August-November 2013
I experience a slow and steady increase in back pain, though torso pain may be more accurate, because that covers my rib area and collarbone as well as my stupid spine.

Thursday 7 November 2013
I share my the tales of my pain with the Medically Trained People and I am told that that does not match my biopsy results, which as you should all know where ‘good’, and thus, I am booked in for a MRI scan. I was rather pleased about this.

Sunday 1 December 2013
I had my scan, which was very painful. You might know this already because I wrote a blog about it, though I am not entirely sure if I published it, because that seems to be the way things are going at the moment. Anyway, I am digressing. It was extremely painful. I found, upon my arrival and after donning the hospital gown, the staff to be dismissive and uncaring when they put me on the slab. I was just told to lie down and shoved right in there; I was not treated like when I came out of the tube. Why was that though? Oh Em Gee, what did they see on the scan? They were definitely taking pity on my, whilst being thankful for their lives even though they were working on a Sunday. The pain would not have been that bad if nothing was wrong, would it? I was informed that the results would be sent to my ‘Doctor’ (fools, everybody knows I have several of them) in a week.

The Following Week In December 2013
Washing the dishes and in my mind, like a big neon sign, was the word ‘TUMOUR’. Then, whilst I was in the bath, a little nursery rhyme appeared in my brain telling me that my L4 was about to snap. I was on the bus and there I thought that it had snapped along with all the other lesions on my spine. Get the picture? The bad thoughts were there and I did not like them.

Wednesday 4 December 2013
In the middle of my imaginative nightmare, I decided to send a casual email about my scan to the Medically Trained People and in the response I was told that the results would be looked at at the Monday morning meeting, and they would be discussed with me the next day when I came in for my velcade. At this precise point, when I was visiting Mamma Jones in hospital after an operation, my paranoia went up a step and then for the next six days, I counted down the minutes until I arrived on the Second Floor for my injection of Cilit Bang.

Tick, tock, tick, tock, something bad was going to happen, tick, tock. Appreciate budding flowers and a clear sky. Tick tock.

Tuesday 10 December 2013
I arrived at the hospital with a slightly sweaty right armpit, which is pretty normal when I am nervous. As soon as I was sitting down in a grey reclining chair, I asked the nurse treating me to make contact with my other nurse, so she knew I was in. Unfortunately, the nurse treating me did not know who I was talking about, so I had to whip my phone out and provide the contact details. I waited. I popped my big toes. Sometime later, I was informed that my nurse was at lunch, but she would call me later to discuss the results. For this reason and this reason only, I turned the ringer on my phone on. And do you know what happened? I did not not receive a call. That evening, the paranoia switched to delusional, with a rather healthy spluttering of swear words, as I imagined the worst whilst being unable to hold my arm steady because of the nerves. I sought advice from the Support Network, who all told me to ring the next day. I then had a few alcoholic drinks to take the edge off.

Wednesday 11 December 2013
I did not call. I did not call because I was due a clinic appointment the following day and aware of my growing mental situation, I decided that as I was definitely going to be told that they could not discuss my results with me on the phone, which is why I had not received a call the previous day, I was best to enjoy my final day of ignorance, before I came crashing down to the reality of terminal cancer. Of course, this did not mean that I did not think about it. I did attempt to bring forward my appointment time, but to no avail. More waiting.

I went out that evening and somebody made inappropriate sexual advances again, and still, all I could think about was the fact that my MRI scan results were going to be catastrophic. Yep, by this point, I was facing a catastrophe. I had a few alcoholic beverages to take the edge off. I did not sleep very well.

Thursday 12 December 2013
Results Day! I arrived at the hospital, but this time, it was not just my right armpit that had a sweat on. I was moist and not in a good way. I made my way to the Fourth Floor and all I could think was, ‘do not give me the Big, Tall Senior Medically Trained Person’ for he is always my bearer of bad news. I’m sure he is lovely, but by default, he’s my nemesis right from the point I met him on 22 August 2012. It was a stuck record in my head. I waited, and this clinic was running particularly late, so I waited some more, watching people go in before me. I cursed the fact that I was there by myself, it was going to be the sequel to Bad News Day, I calculated which friends could get there the quickest. I filled the 50 minutes by taking photographs. They were not very good.

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See? I needed the toilet, I didn’t go. Instead, I spilt my tea all over my dogtooth jumper from Marks and Spencer; it left a stain. In the time I spent waiting, I noted that the Big Tall Senior Medically Trained Person was not there, so imagine how I felt when my name was called and it was by the person who sits above him on the Myeloma Department’s headed paper. I was going to talk gibberish, I knew I was going to talk gibberish, because at this point, I was a dead, stylish, lady walking.

I sat on the pink seat and looked at the Very Senior Medically Person, whilst I attempted to hide my shaking.

And then, the best thing happened, she asked me to remind her of my case, not only that, but she looked at the computer screen a great deal as she caught up on the latest EJ news. That meant one thing, the news was not bad. Phew.

From that moment, I do not really have much recollection of what I said for the rest of the appointment, for I was part relieved, part cursing my stupidity.

As it turned out, the scan results were good. My bones are improving, apparently my spine looks like there is a halo around it. I never consider good news. The increase in pain, I was told, is most probably muscular. I left the room, exhaled and broadcast the results to the nearest and dearest.

πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ

So, there you have it. A mighty fine example of my paranoia. A very similar thing happened last week when I was told I had asthma and a chest infection that required an X-ray. It took a week for me to work up the courage to have said x-ray. I think that was fine too.

The moral of this story is simple. I hate myeloma.

EJB x

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Miss Forgetful

It is a well know fact that I lose things. Usually, the things I lose are items I have to carry in addition to a handbag. In my pre myeloma life, this absent mindedness was reserved for umbrellas, mobile phones and red hats. In My Myeloma world, the umbrella has been swapped with the Walking Stick.

I have been fortunate post August 2012 that every time I lost something, like a hat or a walking stick, I have been able to recover them from Sainsburys or by my front door, that was, until a cold day in December, when I finally, actually, most certainly and positively lost my Walking Stick. Fortunately, it was not The Walking Stick, it was my back up stick, but still, the pain of losing it still smarts, one month on.

The situation was this. I had travelled to the magical land of Wakefield, which is part of me being a grown up once more and building up my energy. A grown up I was, until I went to get my return train and as I walked on to the train, I realised I was missing something, something important. I glanced to my left, out the train window and as it pulled away from the station, I saw it, my walking stick resting against the bench where I was sitting. My head dropped in shame. Not only had I lost a stick, but I also lost Β£15 because I had to get a taxi home because I could not walk safely.

Upset, I was. Wounded, I was. Then, two weeks later, I lost a hat. Another hat. Balderdash. Sad times. Neither were handed in. I whined. Specifically, I whined at my mother.

For those of you who do not know, Mamma Jones can be a joker. As a child afraid of seafood, for example, Mamma Jones thought it would be funny to place prawn heads around the toilet seat to scare me. Scare me, she did. It wasn’t child abuse I assure you. With the same, clean, sense of humour, on Christmas Day, I received a large, oddly shaped present. I was intrigued, especially when I saw her smirk. Imagine my surprise when I discovered that inside this oddly shaped present, was a new NHS style walking stick, but, this time, with a return address and the words ‘help, I keep losing my stick’. How I guffawed. Guffaw, guffaw, guffaw. Mamma Jones. Funny lady.

The next step is to sew my name into all my belongings. It’s a necessity.

This disease I have is so unfortunate. Not myeloma, the other disease. The losing stuff disease. One day I might enjoy a more attractive walking stick, but, the cold hard truth is that, I, Emma Jane Jones, just cannot be trusted.

Shame.

EJB x

2013

Can I really do a review of 2013 two weeks late? The answer is yes, I can do whatever I want to baby, because I ain’t lost.

And so, here we are, 2013 has ended. It came to an end a while ago, I have been reflecting that much about it. It was quite something wasn’t it? 2013. Just insert whatever cliche you want, because that is what I am going to do. For me, 2013 was unequivocally and irreversibly the hardest year of my life. I did not not expect it to be. At the start of 2013, I thought that 2012 was going to remain the hardest year to date, but I was wrong, that honour, at least for the time being, befalls 2013.

Congratulations 2013. You shook me to my core.

2013 was full of many downs until November came and we had a reasonably big and unexpected, up of rather gargantuan proportions. That was nice, except I still do not believe it. The build up to November though, all that trial and all that torment, all those downs, have meant one thing, and one thing only, and that is, that 2013 changed me. The same person who woke up in the early hours of 1 January 2013 sober and maudlin with a paraprotein of 19, is not the same as the person who saw it out drunk with a paraprotein of six, 14 days ago. I am yet to discover whether this change is for the better. Either way, it is what it is.

In review then, I now give you My Myeloma driven, 2013.

January proved to be rather fun, because after the first few days, for the first time in a long time, I was allowed to be drug free. I had just finished PADIMAC, I was planning for my transplant, and I was feeling more positive than I had felt for a live long while, for I had no crash week to anticipate or factor in to my schedule. It also snowed and that my friends, made me sad.

In February, I was heading full steam ahead towards March’s transplant. I was experiencing new drugs and I was getting ready for the chapter to come to an end. It was exciting and nerve wracking all at the same time, all I knew was that I was ready for my autograft. In this month, I also had a little ill advised bump’n’grind on Valentine’s Day, which then caused several months of torment and anguish, because it was a deed done out of myeloma pity and trust me when I say that my self esteem did not like that one iota. In addition to that blip in human interaction, I also argued with a friend and that was not pleasant at all.

March was the month that changed the way I view My Myeloma. With March came the Bad Day and with that news, went my positivity and I do not believe it has come back to me yet. I hated March. In addition to having to put my life on hold for a another four months, I lost my hair and I started a new course of treatment. I really did hate March.

April and May seem to roll into the same months for me, they were dominated by my medication, the steroids and progressively worse fatigue caused by the thalidomide. Oh, it was marvellous. Uncertainty most certainly featured in every waking thought I had during these months too, bar the one day at work I had where I managed to complete a day without thinking about the fact I had myeloma. One day out if 365, that’s pretty good going. In May, on May 24 to be precise, I had a birthday. My first birthday with myeloma and this was a bittersweet affair, despite all the efforts from those around me.

June again was full of uncertainty until it was no longer uncertain and I was given a date for my transplant and the uncertainty was replaced with fear that the Medically Trained People were going to take it away again. March was their fault obviously and it was not the fault of My Myeloma and its excrement, paraprotein. So, for the last days of June into July, I had my fingers permanently crossed.

In July, my fingers were still crossed until I walked into Ambi Care on the 17 July. Despite the fear of it being taken away, I also experienced a very real fear of it happening to quickly. For a fortnight before I went into hospital, I felt that the transplant I had been planning for months and months on end was coming round far too quickly and I remember feeling unprepared. I also, in the weeks leading up to the 17 July, milked the fact I was having a transplant dry. I forced people to have fun with me and fun was had. Essentially then, for the first fortnight of July, I used emotional blackmail to make people be nice to me. It was a nice two weeks. I then went into hospital, had a little bit of chemo, had some stem cells given back to me and pooed by pants. I took a photograph of the incident and I am still to share it with you. Apparently, sharing it would be inappropriate.

Oh and I should probably add that Housemate became a Dad in July and for that little bundle of fur, I would become very grateful.

In August my long, underestimated road to recovery started and for me, this is when I felt myself begin to unravel. From August, my life stopped being all about treatment and it became about living, but it was not a living that I had anticipated before I had myeloma and nor was it a living that I had imagined all those times I lay in my bed dreaming of happier times. I also discovered in that month of being looked after by Mamma Jones and Big Sister, that my Support Network was realistically not capable of doing everything I wanted it to; it was not an easy realisation to have. It hurt, it gave me forehead ache and I am still trying to understand the revelation.

In September I moved back to London and attempted to rebuild my life, and slowly, very, very slowly, get my energy back. I happened to do that in October, November and December and I am still working on it. My improvement post transplant has been much slower than I ever anticipated. Sure, in those autumnal months, I learnt to leave the flat for longer than four hours, but it is not easy. Not easy is an understatement.

Although November was undeniably good, with the small thing I like to call Remission, I discovered that I simply could not rewind to my life before and I have struggled daily with that since. It makes it impossible to remember exactly what I have done since 7 November, because the overriding thought is that living with this is hard. I did not have that in 2012.

On a positive note, I have begun to socialise more, not very well, but I have. I was able to do the goddamn London Film Festival, which made me cry, laugh and sleep. It was, quite simply, my favourite 12 days of the year. Make of that what you will.

December is my recent history and it essentially was a month of trial and error, resulting in a snotty noise and an overwhelming desire to sleep. The latter was something of a theme for me in 2013, just ask my broken bed.

As for my appearance in 2013, well, that changed too. I lost weight, put on weight, lost hair, grew hair, lost it again and then gained a curly mop. I grew a beard. I did not wear any lipstick for a six week period. Needless to say all of this added up to some knocked confidence and the avoidance of mirrors.

This was my 2013. I feel bruised and battered from it, and as I repeat what I said when I started, I feel like I lost part of myself over those 12 months. I like to think that it is not lost forever like one of my hats, just waiting to be found in a drawer or at the bottom of my wardrobe when I can be bothered.

Here’s to a brighter 2014. I long for a brighter 2014. I have a cylinder to overflow.

Oh, I should probably add that as much as I dislike them in their role as the bearer of bad news, the Medically Trained People, specifically those in Haematology, were as marvellous as I have come to expect and for that they have my gratitude. For sure.

EJB x

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