Monthly Archives: September 2014

The Tattoo

Have you ever woken up and wondered ‘my, what on earth does a radiotherapy tattoo looks like?’

Of course you have. We all have. For many of the fortunate masses, it is one of the great unanswered questions in life. We rarely share these thoughts with others in case they think we have some sort of fetish for untidy black blobs on human flesh. Not me, I asked to see somebody’s NHS artwork long before I can cancer. We all know, deep, deep down, when you truly think about it, that these blobs offer nothing for one to fetishise over, even if the ones you will see before you today are contained on my naked body. Sorry, I meant canvas. The marking on a person’s body is merely a permanent reminder that they have or have had cancer. Their presence is a practical one.

I have three of these tattoos. You can call them blobs if you like. I have one on each hip and another one in between the other two. It was not until I looked for one this morning that I realised how ugly they are. Thank goodness they are small and thank goodness I am round.

I am aware that your curiosity needs to be satisfied now and your wondering must come to an end…

It’s time for the reveal….

The Radiotherapy Tattoo, in my flesh.

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‘X Marks The Spot’ – this photograph was taken a day after I was inked and clearly, my body did not like this and clearly, I forgot to wash off the marker pen

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‘Blurry Eyed’ – this photograph was taken this morning, over 6 weeks since the previous photograph was taken, you can see my pyjamas in the corner of the photo

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‘To Scale With A Ranitidine’

Have a wonderful day.

EJB x

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Constructive Criticism

A few weeks ago, I found myself leaving my flat around 12:30hrs for a hospital appointment. Such is my norm, my chosen mode of transport to achieve this was a taxi. Unlike other people, I rather enjoy the occasional natter with a taxi driver. I should be clear that this is not because I am starved of stimulating conversation, it is just because I like to talk. So, I go in the taxi and said something like “oh, it’s a nice day isn’t it?”. I did this for two reasons, the first is because I am British, and the second was because it was a nice day and it was the first time that day I had seen the shining sun. It turns out, that making these comments was a mistake.

It was a mistake because the driver then spent the next 20 minutes or so telling me that I needed to be more active. Not only did I need to be more active, but I needed to ensure that I was leaving my flat before 12:30hrs everyday and that it was crucial that I continued to keep my mind stimulated just as much as I keep body active. I know, I know, I am missing some key parts of the conversation in which I told him I had cancer. However, I think asking to go to the Macmillan Cancer Centre in the middle of a week day, let the cat out of the bag.

I can take a fair amount of criticism. I am pretty sure that in my early twenties, I wasn’t always the lovely human being you see before you today, so I endured the odd bit of unsolicited insight into my negative personality traits. A lifetime of being overweight, also prepares one for having a thick skin against people who feel like they would know better than me on how I best live my life. These days, in the days of the head tilt and sympathy, criticism levied at me, at least to my face, is surprisingly rare. If I do receive any, I usually let it float over my head like I do with the majority of negative thoughts.

That said, there is one subject, a rather broad subject, that I think nobody has a right to comment on, and that is how I manage My Myeloma. I guess, given the percentage of my life this takes up, I also do not appreciate any critiques on how I currently choose to live my life in order to make it through my treatment.

The taxi driver did not know all of this, it was the first time we had met after all, but what he believed to be a throwaway conversation with a cancer sufferer, I found to be deeply insulting and naive. Above anything though, his comments just really, really pissed me off. I know they pissed me off because I am still thinking about them today and they made me think of other similar comments that have pissed me off since I was diagnosed. It has also made any similar comments made to me since, fist clenchingly annoying. It has all led me to believe that there is one golden rule of people dealing with me and My Myeloma; unless you have something positive like ‘wow, I just do not know how you do it’, or something with concern like ‘how are you doing?’; do not say anything about how you think I should manage my myeloma. You are not me, and as much as I recognise the care the comments stem from, nobody but me lives with it 24 hours a day. Everyday.

Although I sound particularly dogmatic on the subject, it is not because I am ungrateful that people are concerned about me enough to say things that they think will benefit me in my quest to survive. I am not ungrateful. I like to know that people care. The truth is, there is nothing people can constructively say to me about myeloma, or say that is just a blatant criticism of my behaviour, that I have not thought myself at least ten times over and tortured myself at least ten times over in the process. You can be damned sure that the arguments I have in my head about how I should behave, are far worse then anything anybody can say to my face. After more than two years, I have learnt that managing my own criticisms is hard enough and I do not need others dredging them up out of their own altruism, care or in the odd case, meanness.

On one side of the coin, I give myself a pretty rough time about how long I stay in bed, how little I spend in bed, how long I stay in the flat and whether it is sensible to leave the flat. On the other side of the coin, I pride myself on how, despite my many misgivings about the length of time I spend in bed and in my flat, I still manage to get out of bed everyday. In getting out of bed everyday, I also pride myself on how I still manage to hold my head high when I need to stay in bed.

The pride I have in my own behaviour means that any comment or criticism does not just feel like a mere comment or criticism. I feel like it is somebody attacking my core being, something they may have an understanding of, but they will never truly understand because they are not me. In this, I include fellow myeloma sufferers who overtime, have told me how I should feel when I do not feel that way. Once, somebody told me the side effects I was experiencing post multiple Velcade injections could not be happening because they did not experience them. We are not the same. I also include friends, one of whom, I discovered put me through a rather difficult time during my remission because they felt that I had not expressed my gratitude enough for their kindness in my blog. Trust me, for a few minutes on most days I worry that I will never be able to show enough gratitude for the way the majority of my Support Network have been there for me. I did not need the silent treatment when I was trying to move on and up in the real world, to realise this. It set me back.

The most irritating comment is being told to get out of bed or off the sofa and that doing so will make me feel better. It’s not a malicious comment of course, but it is one that seems to negate the work I have done to allow myself to stay in bed. The work I have done to know when I need to stay in bed. I would not have been able to say this a year ago, but I know now that when I stay in bed, it is because I physically need to stay in bed. It is not because I am depressed and it is not because I am lazy. I am talking a lot of drugs and I endure daily back pain.

I am strong, but I am not infallible.

Everybody is always going to have an opinion on me and my illness. Selfishly, when these opinions go against my own, I take offence. I bruise from it and I have been battered enough by My Myeloma to sit at home worrying that others think that they could manage this better than I do. The comments make me doubt myself and they make me doubt how far I have come from the naive 28 year old in the hospital bed on that fateful Friday afternoon.

And do you want to know how far I have come? Right now, I am able to watch a medical television melodrama. I am able to think about my future good and bad and I am able to detach from it when I need to. My next sentence makes no sense, but I did this by myself. I did this all by myself, just with a teeny bit of help and love from those around me.

It’s My Myeloma after all.

If you must criticise something, tell me I need a hair cut or do what Mamma Jones did the other day and tell me that I need to trim my nasal hair. I can take that. Just.

EJB x

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The Thursday Clinic Appointment

Every four weeks, I make my way with much trepidation to the Macmillan Cancer Centre on a Thursday morning for my myeloma clinic appointment. I doubt there will ever be such an appointment now, even if the lapse between them lengthens, when I do not experience some level of apprehension.

My unease is always somewhat lessened by the routine that exists when I finally arrive in the big glass building. In spite of the anxiety, these trips almost always exist on the duller side of dull. And that is a dullness that needs to be shared! Yesterday then, the routine went a little something like this:

07:45hrs:
Housemate woke me up like he does almost every weekday morning since I was diagnosed and reminded me that I had to get up for my appointment. The appointment, was at 10:50hrs. I got up half an hour later. It was difficult.

10:10hrs – Transport
I left the flat via the cheap means of travel that is the taxi ten minutes later than I had planned. Unfortunately, this is very normal for me. I was impressed that it was only ten minutes. I applied the lipstick in my hallway before I left. I also grabbed the full sharps box I had placed by the front door the night before, with the hope that I would remember to replace it with an empty one at some point whilst at the centre.

10:45hrs – Bloods
I arrived at the hospital, where I immediately made my way downstairs to the lower ground floor to have blood removed from my arm. I still continue to lack the confidence in being able to safely make my way down the stairs, so I got the lift. Laziness has nothing to do with this decision whatsoever, yet, embarrassment that this can be perceived as laziness always exists when I turn right away from the stairs towards the lift.

For late on a Thursday morning, I was surprised to see only three people in front of me in the queue. I was number 22 by the way. I would have preferred number 24, but I did not have the time to wait for two other people to go ahead of me. The receptionist on the phlebotomy reception always refers to me as ‘Myeloma’. I imagine that this is something he does to all frequent myeloma patients because our blood forms are in one pile, and he is does not hurl it at me as a form of an insult. I will not lie, I kind of like it. And you know, he might not do it to all the patients, so I can momentarily pretend that I am special or just memorable. As always, I made some light, wise cracking conversation about my weak veins the minute the tourniquet was placed on the top of my left arm.

11:05hrs – The Waiting
Yesterday, I skipped purchasing a cup of tea and instead headed straight up to the fourth floor for my appointment. I sensed that being 15 minutes late for my appointment was acceptable but 20 minutes was not. Plus, I really am not a fan of the Tetley tea.

First things first, I had to check in. I checked in and then the nursing assistant did what she does to me every month, which is something that is known as pure torture. She weighed me. Thank goodness I managed to do something, adding to my late departure earlier in the morning. As soon as I stood off the scales I got a bottle of water out of my bag and started drinking it to make sure I had the goods for my pregnancy test.

Myeloma patients are required to wait on a set of chairs in a corridor on a Thursday due to the transplant patients in the actual waiting area. In that corridor, there were five people waiting, all of whom could not raise a smile. At least, they did not in the 25 minutes I sat there. It’s a depressing wait. Nobody talks, even the ones accompanied by other people. One man who I sat next to at first, but he quickly moved one seat away from me spilt a drink on his trousers. I offered him a tissue and he just shook his head without making a sound. I smiled, he did not. I deduced that they suffer from the same apprehension that I do, they just prefer not to shout about it. So, I just sat and continued hydrating myself.

A sixth patient made an appearance, one who I had seen downstairs but failed, maybe on purpose, to make contact with. We were on a PADIMAC together and despite him being a friendly sort of chap, our conversations would occasional upset me. I suffer greatly from myeloma treatment envy and on that particular course of treatment, I had the envy. Anyway, he said he missed me and had been trying to find out how I was. He could not wait to get home and tell his wife about my curly hair. The conversation made me feel a slight twang of guilt about my behaviour on the lower ground floor when I first saw him.

11:30hrs – My Appointment
Shockingly, my wait was incredibly brief yesterday, something that I could not help but vocalise. The Medically Trained Person called my name, she had not seen me for two months, and I was pleased that she immediately noticed my movement was less strained then it was when we last met. I believe she said that I was “positively speedy”. As I continue to be in pain everyday, it is very difficult for me to notice any improvements in my mobility. I do not think my memory works that way. She saw it, at least, I hope improvement is what she saw.

In these appointments, I tend to just tell them what has happened to me in the four weeks since my last one. I had a lot to say, but had a CNS been in with me, they would have known it already, for I feel like I have been overly needy since my radiotherapy finished. I mentioned A&E, the vomiting and nausea, the diarrhoea and the increased fatigue over my last week. We also discussed my forthcoming holiday and the need for me to be cautious. I said that with Mamma Jones, I would have no option to be anything but cautious.

The Medical Trained Person told me that at my last paraprotein test, taken on 28 August, my paraprotein had fallen to 16. The folks at UCLH continue to be pleased with my progress. Myeloma treatment is not that simple, and what followed was a conversation about my low neutrophils and what would happen to my medication if they continued to be low. Unfortunately, my Full Blood Count results had not been returned and I was sent off to see the pharmacist to collect my pile of drugs.

En route, I had to interrupt a conversation a Medical Trained Person was having with another patient to say that I had to do my pregnancy test. As she said, it could have been something of a Carry On moment. The urine sample I did, not without spilling it all over my hands and the floor. It happens every single month.

12:00hrs – The Pharmacist
My visit to the pharmacist normally lasts no longer than 10 minutes; not yesterday. My FCB was back and my neutrophil count had fallen further to 0.47, and my white blood count to 1.38. As a lot of you do not need to know what this means, it is very low and the WBC result definitely explains my recent increased fatigue. And so, I had to wait as the pharmacist went to ask for some further educated advice. Any anxiety that had gone when I left my previous appointment quickly returned as I sat in that room by myself.

The decision was made that for one cycle, I would be given a cyclophosphamide reprieve and the Revlimid dose has been halved. Apparently, my body needs to a wee break from the drugs. I see positives and negatives in this latest drug development. To help the infection magnet that is my body, my G-CSF injections have also been upped from one a week to two. I now have to return to the hospital on Monday to have my bloods done again. I hope that these bloods will not stop me from getting on a plane next Wednesday.

12:40hrs – The Dispensary
I was done, and in possession of a lot of publicly funded medications bar my morphine. So, I made my way back down to the ground floor to collect the controlled substance from the dispensary. It was not ready. I was not surprised.

12:45hrs – Macmillan Cancer Support
I took it upon myself to pop into the Macmillan Support Centre to have a brief chat with my favourite ladies. I think they needed to know that I had an uncontrollable desire for sushi followed by a rare steak followed by raw cake batter. I was told that given the current 0.47, such a meal would be unwise. As if I needed to be told that.

To avoid getting angry at the snails pace of the dispensary, I spent the next hour catching up with a friend over a cup of tea. I then ran a few errands on the worse road in London Town.

14:30hrs – The Dispensary
I returned confident that my MST would be ready to collect. By this point, having been on my feet for more four hours, I was more than ready to go home. I handed in my ticket and after ten minutes of the gentleman trying to find it and telling me it was not there, and me reassuring him that it was, another person told him that it was in the floor, a mere 5 metres from where I stood. I was not pleased, nor were the six people behind me waiting to collect their drugs. I handed over my driving license and signed the form to say it was for my personal use. I must not forget that immediately before that I put pen to paper, I had to confirm that I was not allergic to any drugs and I had taken MST before. 772 days before in fact.

15:10hrs – Home
I opened the door and made my way immediately to the sofa where I stayed until 20:00hrs, at which point, I dragged myself off to bed.

So, you think all of this sounded monotonous? You can only imagine the thoughts and discussions I omitted from the experience for your pleasure. Well, just think, I get to do it all over again in four weeks time. And the four weeks after that and most probably, the four weeks after that.

This is my life.

EJB x

P.S. I remembered to replace the sharps box.

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♿️The Cancer Card♿️

With all this talk of the stress of benefits and the general downsides of having cancer, I thought it was an opportune time to boast about the upsides of cancer. The greatness of cancer if you will.

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Cancer, unlike other disabilities, is hidden. These days, people rarely look me and think that I have cancer. If they did, I would not find the occasional, and crucially, the unavoidable Saturday jaunt into the Dalston Sainsbury’s so traumatic. The truth is, the big group that is People, rarely even see the walking stick. I think the point I am trying to make is that they would see a wheel chair, grey hair and wrinkly skin and maybe even a hearing aid. They do not see Myeloma. One needs proof of that, and now, I am in receipt of tangible proof.

The walking stick is not enough. I found that it does not accurately represent what is happening in my body, nor does it represent what can happen to my body if I were to fall flat on my face. Prior to my tangible proof, the only option open to me, was for me to tell people about My Myeloma. I do not mean I would tell everybody I came into contact with, what I mean is, I would tell people if I thought it would be of advantage to me.

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It all started innocently enough, for there are several reasons, daily reason, where I cannot do something because of My Myeloma. As I cannot do certain things, I have to ask people for assistance. For example, I once asked a stranger if they could tie my shoelace up for me. The first time I got a train post diagnosis to Wakefield, my return journey was disturbed by a broken down train or two, and so, in Leeds where I had been transported I panicked over how I was going to get on a seat on the train. I thought about it, and as I was so innocent and sweet back then, instead of telling People my woeful tale, I phoned Big Sister and talked to her very loudly whilst dropping in key words like ‘chemotherapy’, ‘cancer’ and ‘pain’. I got a seat.

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Over time, my skills have developed, as have my tools. I have discovered that the occasional mention of my illness to a taxi driver can result in a discount or even a free journey. That however, was not enough for me. As my finances have been so detrimentally effected by My Myeloma, what I wanted, nay, what I demand, is the concessionary rate whenever and wherever I can get it.

The guaranteed concessionary rate is something I had to work for. There are some institutions, the British Film Institute for example, which take you on your word. Most institutions, the British Library for example, demand proof of disability. Fortunately for me, last August I applied for Personal Independence Payment, and in December, after a lengthy form and a letter, I was told that I would get the enhanced payment. As well as providing me with crucial financial assistance that covers the extra costs of being pretty useless, PIP opened up a whole new world of discounts. You just have to know where to look for them.

In London, as a standard with PIP, you are allowed to apply for a Blue Badge, a Freedom Pass providing free travel on Transport for London and a Taxicard. I applied for all of them. The Blue Badge is most beneficial; it means that when I am being driven, I can park in disabled bays, which means I do not have to walk as far. In London, it also means that one can park for nothing on a residential street. The Taxicard provides me with 52 £10 subsidised taxi credits, meaning I only pay £2.50. I have been saving these for my financial ruin. The Freedom Pass, well, I am not in receipt of that yet, because I had an argument at my local Post Office.

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What you are less likely to be told about is the Disabled Railcard, which for the bargain price of £20 a year, one gets a third off all rail travel for the disabled and the person they are travelling with. It has been most advantageous. You can also arrange for assistance at the station, and I have found that people are far more inclined to lift your luggage onto the train for you.On another trip to Wakefield, with my railcard in hand, the train once again broke down and the passengers were decanted onto another train. Instead of passively aggressively getting a seat by ‘accidentally’ telling strangers I had cancer, I walked up to a member of staff, flashed my railcard and started to cry. Before I knew it, I was escorted to the First Class carriage. Score!

What nobody will tell you about, is a pure wonder. It is a wonder that is called the Cinema Exhibitioner’s Association Card. It’s a mouthful to be sure, but for a £5.50 + £1 admin fee postal order, I now have a magical card eligible in over 90% of British cinemas, that provides a free ticket to my carer whenever I go to the cinema. Given that this is my favourite pastime, I have found this card to be a great way to win friends. My local cinema allows me to use this card with my membership discount, which usually means a ticket sets me back all of £2.85. Sometimes, I find myself looking at the CEA card, and stroking the fetching photograph of myself, such is my fondness of it’s power.

For the times when watching people perform in celluloid is not enough for me, discounts can also be found in the majority of London theatres. The big corporate theatres in the West End, via the means of a separate disabled telephone booking line, even offer half price tickets for those less able go manoeuvre. I experienced such a treat on Thursday.

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Elsewhere, in the big wide world, I am also eligible for concessionary rates at galleries and museums, and the National Trust. I have had to teach myself to be brave enough to ask for the discount. I tried a few times before I carried the additional three cards in my purse (NHS free prescription, eye care and dentistry card included), and my success rate was 50/50. The Imperial War Museum Duxford for example saw my bald head and stick and offered me a concessionary rate automatically. On the other end of the spectrum, the British Museum told me I had to provide them with ‘evidence’. I do not think my biopsy scares would have suffices. I knew on that day that I should have booked online.

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Some people might think that I should not be doing these things because I am ill and because I have limited funds. The truth is, I find that these discounts are essential because I am ill and because I have limited funds. I very rarely socialise with people like I used to, in a pub. If I am honest, I rarely leave my flat. To be able to leave the flat, and to be able to afford to do something that I enjoy, can look forward to and that provides me with a few hours of escapism and thought, is vital to my treatment. It allows me to keep hold of some of the things that existed before myeloma. For a while, I was ashamed to admit that I was receiving discounts and when I was not ashamed I was embarrassed to ask for it. Not anymore. I will take whatever I can get to improve my quality of life. I will also ask for it. I am convinced that other people would benefit from these little perks too, so, do your thing now and spread my words.

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Before I end this blog, I should probably add in case you thought this blog in poor taste, that I would give all of this up and probably two limbs to boot, if I could wake up tomorrow morning myeloma free. The world and Bruce knows that this will not happen, so, I will just have to keep flashing the C Card.

EJB x

P.S. Rule Britannia 🇬🇧🇬🇧

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Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

EJB x

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My Worth

With the exception of the first few weeks of my relapse when I near dehydrated myself due to the constant flow of tears, leading those close to me to believe that I had given up the good fight, I have spent the last two months being the brave old soul that I know and love. The smile you see, is not a fake one, I am committed to finding the best in the situation I find myself in. Even if that situation involves my ever expanding waist. I know I am doing well given my current predicament because my counsellor has told me so. The reason, I believe I am coping, is because when I feel a problem looming, I acknowledge it. Hiding it is unhealthy and let’s face it, I’m unhealthy enough as it is.

In the last fortnight, coming off the back of my dodgy stomach, I have noticed that I am at risk of rocking my battered paddle boat. I’m snappy and my sleep is broken by something that is not related to rolling from left to right or my weak bladder. At the forefront of my mind is money. My impending lack of money. It’s a multilayered mess of stress and uncertainty, both in the short and the long term.

On 30 August, I officially went onto nil pay, which means exactly what you think it means. Or at least I think it does. Until I went onto nil pay, I was unable to apply for the government handouts, which I hope are going to keep me afloat until the end of the latest volume of My Myeloma Tale. Due to my unexpected illness, I was a week late in applying for the three benefits I think I am going to require. At least, the three benefits the various faceless people I have spoken to on the telephone have told me I can apply for. The applications were long and they were tiresome, and despite the fact that all three are now in the post, I am not any clearer about how much money I am going to receive.

Thankfully, I am already in receipt of Personal Independence Payment, which was once called Disability Living Allowance. Since I was granted this money in December last year, I have used this money for the reason it is given to me, to help me live my life around my disability. Until I have confirmation from the Department of Work and Pensions and Islington Council, this money has become my main source of income. A source of income that does not cover my rent, let alone my food delivery or paying somebody to clean my flat.

I am also receiving some sort of sick leave entitlement, but it is not Statutory Sick Pay, which I was recently told I have exhausted. Prior to this, I sought advice from Macmillan and I used my own smarts to research the benefit system. It’s a pernickety system, and having discovered that I am not entitled to SSP, I no longer know if the several forms I completed last week are correct. As soon as I begin to question this, my brain explodes with questions, anxiety and paranoia over what money I will get or not get as a result. It goes something like this:

em>If I am no longer eligible for SSP, does this mean I am entitled to more of less money? Have I committed fraud by saying I am not receiving SSP but I am receiving the equivalent amount of money from another source? Why have I exhausted SSP, because Macmillan advised me that it resets after eight weeks of full time work and pay? I need to sort my pills out. The DWP guidance is unclear, do I need to phone another anonymous help desk number to get an answer, and if I do get an answer, how do I know it will be the correct one? Oh gods, I am tired. Does this mean that I should have applied for ESA instead of income support? If that is the case why wasn’t I informed that I had exhausted SSP and given the necessary form? WHY AM I STILL CONSTIPATED? I need to sleep. Can I afford to buy a can of Rio? Will I have to reapply for everything? Will the money come through before my rent is due on 15 October?

To date I have applied for Income Support via the Job Centre, which required a 45 minute phone call followed by a 14 page form received through my letterbox two days later. The application was also accompanied by two months worth of wage slips, a copy of my newly issued passport, my PIP entitlement letter and letters confirming my nil pay. For housing benefit, the form was a mere 29 pages plus seven support documents including those listed above and my tenancy agreement, my P60 and a copy of my bank statement. Only one telephone call was required asking if my tenancy agreement arrangements would fall within their rules for assistance. Yesterday, I completed my final form, which I requested eight days previously for Working Tax Credits. It was a form, that at this stage at least required no support documentation, but only asked for my financial situation up to April 2014. The forms cost me £10 in photocopying and £2 in stamps. Stamps!

Having spent most of my good hours last week repeatedly declaring my single status, looking at my weak bank balance and putting pen to paper to say that I need somebody else’s help, has surely made me question my existence. When I am not being melodramatic, it just makes me question the choices I have made and continue to make. I do not know how it is possible to fit your personal worth on a form, but that is what I have had to do, and it does not amount to much. And then I start to think:

‘What if I do not get housing benefit? What if they do not approve of the number of tickets I purchased for the London Film Festival even though they are going to get my good cylinder through Cycle 4? What if they do not accept the tenancy agreement? My back hurts. Will I have to apply again for the tax credits to reflect my nil pay? Why was there not space for this on the form? Is my landlord going to put up the rent? How am I going to get to the hospital? I have cancer.’

If all this was not enough, everything else going on around me has become a chore. Answering my phone is a chore. Speaking on the phone is chore. Emailing is a chore. Things that will only take a few minutes feel like they are the equivalent to writing a dissertation, hell, even keeping my blog up to date has felt like a chore. Like many things, I know that the minute I do them, I feel better, but I fear managing them in the first place. I do not trust my mood, which I fear is assisted by the Dexamethasone, Revlimid and Cyclophosphamide.

Think I am exaggerating? Well, I am fortunate enough to be going on an externally funded holiday in a fortnight, and last week, the tour operator said that I needed to get medical approval before I travelled. Not only did this cause me stress, but it caused Mama Jones to worry, which then increased my stress. I know it increased my stress level because I initially ignored it, shouted at my mother and made her mange it. There is only so much my drugs allow me to deal with in a given week. The situation was not helped by the fact that the Medically Trained Person who said that I could go on holiday was not in last week, and another Medically Trained Person said that they did not think it was a good idea. It was yet another thing to make me feel itchy. Fortunately, the approval came through yesterday, but it threatened one of the few things I have that I am genuinely looking forward to.

I am also in the middle of sorting out my long term financial security, and this, above everything else makes me feel pressured and most uncertain about my future. There is nothing I can do but wait and continue to believe that my treatment will be successful. In the short term, I have to make sure that I get out of bed everyday, because this week to date, the inclination to do so has left me. I used to me good a dealing with pressure, but this is not the electricity going off at a campsite full of irate customers; this is my life.

As with the pain in my back, I feel like all of this is taking my focus and energy I should be giving to my treatment, away from my treatment. I have felt worse in the last few weeks than I have in a long time, and I believe that this is only slightly related to my medication. Money is stressful and having cancer does not change that, although in an ideal world, it would do. It’s the reality of having cancer, and right now, I truly wish it was not. Chemotherapy is enough for me.

I will leave you with this thought. According to a handy leaflet from Macmillan, a single, childless person under the age of 34 can get a maximum £350 of benefits a month excluding PIP and ESA payments. This means that I will get between £850-2100 a month; I just have no idea where on that spectrum I am going to end up. What am I actually worth?

That equates to a sleepless night or two.

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Helpful

💶💷💵💴

EJB x

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The Gippy Tummy

In the last few weeks, I have learnt many a lesson (okay, four lessons). All the lessons revolve around the medical wonder that is radiotherapy; my view of which has changed quite dramatically from when I previously had the NHS brand my who-ha in October 2012. In short:

• Radiotherapy is not easy
• Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
• Never ever ever wish for a gippy tummy
• If you are a female, always prepare for a radiotherapy session as if you are about to wear a string bikini in public

Since my trip to Casualty in June, I have wanted one thing and one thing only, and that one thing is radiotherapy. My pain at that time was such that I believed that fixing that pain was the only way I would be able to make it through my current treatment. On my worse days, my survival hinged on fixing my pain. Do not get me wrong, I loathe chemotherapy just as much as I know it is a necessary evil, but try being on a course of treatment when you cannot bend down and pick up your bath mat, sit on the toilet or pull yourself out of bed. Maybe reducing my paraprotein should be my priority, but it is not. My priority has and continues to be fixing my back, so I can then focus on that pesky paraprotein. Battling the two at the same time takes energy, more energy then I reasonably have. I’ll use my energy on both if I have to, but my effort in doing so is a disservice to both. My pain has taken away too much of my freedom and I just want to reclaim some of it.

The journey from discovering the first twinge of back pain on 27 May, to completing my course of radiotherapy treatment on 29 August has been mercifully quick. Three months may sound like a long time, but all things considered, it has not been that long at all and that is just another prime example of the brilliance of the NHS.

It may have taken a month or so to convince the Medically Trained People, with Operation Radiotherapy, that I could not wait to see if my treatment alone would heal my back, but once that was agreed by the end of July, everything else happened very quickly. Operation Radiotherapy was far from subtle and essentially involved me only talking about my pain during my appointments, much to the dismay of Big Sister who wished for me to discuss my treatment plan. I may not have been subtle, but neither was my pain, which had decided to occupy almost every waking thought, especially the thoughts that came when I attempted to move in my sleep.

On the 6 August I was informed that I would be having radiotherapy and it was most probably going to be in the form of five sessions over five days, targeting the tumour around my L5. I was ecstatic at this news. I know I was ecstatic because I wrote a blog about it. It was during this appointment that I was told that I may experience a gippy tummy as a result of the radiotherapy. Thirteen days later my treatment began.

I did indeed have five sessions, on five different days, but due to the Bank Holiday and my need to see Kate Bush in concert, it actually happened on a Thursday, Friday, Tuesday, Thursday and a Friday. A week prior to the first session, I had my planning appointment, which featured two new tattoos and a CT scan. By the Tuesday session, I was incredibly relieved that I had some respite between zaps and I was not due in everyday. I do not think my body would have been able to handle it. It was a four-five hours a day for two minutes of radiation, and I am a weakling.

The Radiotherapy Department at UCLH is a strange place. It is in the basement of the tower and thus as I waited, I had no phone signal to keep me company. The waiting areas are very much designed for patients receiving the treatment for usual cancerous reasons. They were not designed for people getting radiotherapy to ease their pain. It may sound like a small thing, but waiting for upwards of an hour on a hard departure lounge style chair is not something my spine particularly enjoys. Add that with having to lie down on a slab for ten minutes, bookended by hour plus journeys in a suspension free ambulance chair and what I got was immense jarring pain.

In the secondary waiting area, the opaque windows are adorned with pictures of butterflies and stars accompanied by quotes about the brilliance of nature. This of course, made me guffaw at the thought that somebody, somewhere, believed that this would relax somebody with cancer. It was in stark contract to the stark room with the big whirling machine hidden behind a maze of iron lined corridors. In these rooms, there are six identical rooms, there was a screen for me to protect my modesty as I removed the bottom half of my clothing. I am not entirely sure why I needed to protect my modesty with a screen, when my knickers would be pulled below by bum during each session, when I was lying on the metal slab, with a piece of blue paper over my nunny.

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I found the whole thing incredibly exhausting.

After the first, second and fourth session, I vomited. Vomiting is not a side effect I am particularly used to. I thought I was used to everything. I may have had a stem cell transplant, but vomiting, thankfully, bar a few other occasions on my HRT, had been my only experience of being physically sick. Nausea sure, I live with that daily, but vomiting to me symbolises being unwell and until I experienced cancer, is one that I heavily associated with people having cancer. On the fourth day, I lost a very nice sandwich from Benugo’s. I did not like it. It made me feel like I had cancer.

On days 1-5 and for several days post, I experienced extreme fatigue. After the first session, I got into bed at 19:00hrs and emerged the following morning. Three days after my last session, I was so tired, I forgot that I was crashing on my steroids. Fatigue was not a side effect I was told to particularly expect, but I think that radiotherapy and chemotherapy is something of a toxic mix, and my body was just displaying that for all and sundry.

On the fourth day, I also had my regular clinic appointment, during which I lambasted the false claim that I would experience a gippy tummy. I did this because I am a fool and did not associate vomiting with what one could consider a ‘gippy tummy’. I was just fed up with being constipated that I thought I would welcome a good, thorough cleaning. The treatment finished on a Friday and by Sunday, I was cursing myself and the pain in my stomach. By the Monday evening, after I had spent four hours on the toilet clearing my bowels, I was cursing the radiotherapy. I am a self styled ‘Strong Ox’, but slipping off a loo sit because my naked body was drenched in diarrhoea induced sweat, was enough to make me doubt my stoicism. The next day, Haemo Dad put me in his car on the advice of the Medically Trained People and took me to A&E.

I like to think that my four hour adventure to Peterborough City Hospital was not an overreaction and was a well considered precaution. It was a precaution for many reasons, not least because four days before my neutrophil count was 0.85 and there was a fear that I had an infection. To me it was a necessity because I needed reassurance that everything would be okay. I know many side effects and I know how I should feel on almost every occasion. I had no idea what was happening to me and that scared me.

Haemo Dad had to go off and do some Haemo stuff in PCH, so he was replaced by Mama Jones who waited patiently with me until I got the okay to go home after I was given some fluids and IV paracetamol. As an aside, I can confirm that IV paracetamol can give one a nice, deep sleep.

In my private room, having waited for five minutes to check in with my fellow citizens in the reception, I was rather impressed with the treatment I received. It was thorough, and it was delivered by a Person Medically Trained Funded By The RAF, which led me to seek confirmation that I was not hallucinating. Obviously, for anybody who has ever inserted a cannula into my veins or has been present when somebody else has inserted a cannula into my veins, I was rather less impressed by the size of the cannula (I think I am spoilt at UCLH), or the blood that bled when the tube was removed. It is 15 days later, I still have a bruise.

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Evidence that I made a third visit in two years to Peterborough’s A&E.

After six more days of sleep, liberal doses of Buscopan, and a £34 round trip to have my bloods done, I felt back to normal. As I said to my CNS, normal to me means heavily constipated. As well as feeling constipated, I also felt embarrassed that I went into my radiotherapy thinking that it was nothing. Not only nothing, but I went in thinking that it would be easy and welcomed the predicted side effects. I was wrong. I would not want to go through it again any time soon.

Time will tell whether the treatment worked. This week, my back hurts more than it has for a month and I hope this is a sign of the radiotherapy is working. I just don’t know. If this whole affair has taught me anything at all, it is that when it comes to My Myeloma, nothing is ever certain.

🙏

EJB x

P.S. Blame the fatigue for the length of this blog; I certainly do.

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