Tag Archives: mobility

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
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This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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Priority Seats

Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.

I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.

Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.

Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.

Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.

If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.

For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?

I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.

Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).

I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?

Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…

Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.

Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.

More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.

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Of course it is ‘ruddy hilarious’ when you don’t need a priority seat

I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.

EJB x

P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.

* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.

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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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Event Planning

Events terrify me these days. They terrify me not because I am socially awkward, though I can be slightly awkward at times because My Myeloma led to my almost sobriety. Events terrify me because they come with so much baggage. The baggage usually comes from my puny brain, and mostly stems from a belief I have that people, that’s right the broad brush stroke of people, do not full understand myeloma and think that it and by connection, me, are a pain in one’s arse.

Will my energy last? Will somebody who does not know about myeloma, or is just plain ignorant, put me in some sort of headlock and yank my neck down? Will a drunk person bash into my back causing it to fracture? Will my back fracture by itself? Will I cause a scene? Will I spend the entire time wanting and needing my bed? Will I have any fun at all? Will people understand that I cannot have fun like I used to? How will I get to my bed? What will happen if I have bowel issues?

Three or four or all of these thoughts tend to pass through my head prior to any scheduled event. They did prior to my relapse, so in the time hence, said fears have only increased.

There are times when I cannot go to events. It has taken nearly two years for me to fully admit this to myself, but it is the sad truth. There are just some events where the value of pain and fatigue crush the chance of whatever fun I may have, and in turn, ever so occasionally, I will let people down by my absence. And yes, I value myself enough to believe that my absence would feature on people’s radar. It’s never an excuse.

A few weeks ago, 12 days ago to be precise, I had to attend an event. Not just any event, a wedding. Not a wedding located in taxi distance from my flat, a wedding near Halifax, Yorkshire. Due to some well documented issues with my back and the acceptance mentioned in the paragraph above, I was unable to attend the hen do.

I have been to a wedding with myeloma in my body. I have also declined two other wedding invitations because the myeloma forbid it. At the wedding I attended, I was a bridesmaid, but there was no fear attached to that event because I was surrounded by a family who know too much about myeloma, so I knew that my limitations had been thought of. My family was also invited to said wedding, so they were around in the evening to mind me. Mind me they did, but not before a drunken fool made my spine go into spasm. The wedding was also located a mere 8 miles from my second bed, which came in handy when I needed to lie down.

Anyway, I digress, back to the wedding in Halifax, away from these comforts. I was advised by a Medically Trained Person not to attend. It was some advice that I paid absolutely no attention to at all. Instead, I set my mind to attending, and put a personal delivery plan into motion, to ensure my success. Sod the bride and groom, it became about me getting through the day. Well, it became a little bit about that, it was still their special day.

I had a week of resting to preserve energy and one day of not leaving the flat at all, lying flat, on the wedding eve. I changed the days I was supposed to take my steroids to avoid any chance of a crash, and I also used those bastards to assist with my staying power (something I did as a bridesmaid too). I also took cereal bars, lots and lots of cereal bars and lollipops, should I, at any time feel like I was about to crash. And still, there continued to be some mild fretting over my usual event related insecurities.

The point of this blog is to say that all that worry, all my worry was redundant. I might even go as far as to say that it was unnecessary. I have long worried that my friends do not understand myeloma and that within that, they do not have the patience for it. The patience for me. It is a long running theme in my counselling sessions. The wedding was on a Saturday and by the Sunday night I had this strange feeling of love and gratitude in my stomach. Almost shamefully, I was beyond pleasantly surprised.

There was a group of about 15 people at the wedding, who I felt were on hand to make my life easier. Actually, my description is incorrect, because I did not feel like me having myeloma was a big deal or a chore or a nuisance (apart from when it came to getting to the car at 01:00hrs, and even then, I was assured that I was none of these things). Some how, it subtly blended into the background, bar my profuse sweating, and I was able to last the entire day just like them.

If you are wondering what the hell I am going on about, let me enlighten you.

• The day before the wedding, a friend came round to paint my toenails because I cannot.

• I did not need to think about any mode of transport, I was driven to and from Halifax riding shot gun.I was also driven to and from the wedding venues, totalling four journeys, with four different sets of people.

• I was allocated a place to lie down, should I (and I did) need it during the day.

• A friend noticed my profuse sweating, and gave me a cooling wipe.

• I was given a means to return to my hotel at any time, should I (and I did not) need it.

• A friend convinced a stranger to drive up a long steep hill at 01:30hrs in a pick up truck to collect me because my lift to the hotel could not get up the hill and the booked taxi refused to.

• The bride kindly excused me from my pre wedding commitment to make jam, because she knew I would struggle to stand and bend at my hob.

So you see, the moral of the story is this: My Support Network do get it, it is not just a select few who understand my plight, and when done correctly, I can pluck a good 12 hours worth of energy from somewhere. Oh, and my friends do sometimes make me feel warm and gooey inside. And I looked nice.

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EJB x

P.S. I slept for 14.5 hours the day after the wedding. It was grand.

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The Mobility Enhancer?

Today, apart from the work and the tiredness and normal feelings of insignificance, I am awash with excitement. Dare I say it, the excitement is palpable, that is, if I had not spent my day talking about risk management. I am excited because tomorrow marks my first physiotherapy appointment.

A build up to anything causes excitement, or apprehension, if your glass is half empty. On this subject, my glass is three-quarters full. I was referred to the physiotherapist in December and a mere four months later, I actually get to see whether it is worth it. It’s been a longer wait really, for I asked for a referral when I was on PADIMAC, way back when in 2012. I believe on that occasion, my request was immediately dismissed as folly.

So much hope for my immediate future rests on the success of it. One could say that I am setting myself for disappointment, but keep up, my glass is half full. I do not have a barometer for improvement, I do not know what improvement will look or feel like. Right now though, I think that anything is better than what I have right now and what I have right now, much to my initial denial, is chronic pain. That is pain, to varying degrees, everyday and every night.

I am a realist, it’s not going to get me doing cartwheels nor is it going to get me on a roller coaster, but it may mean that I can stand for longer than I can stand right now, or sit for longer than I can sit right now. I might be able to be seen less often with my walking stick. It may possibly be able to walk that little bit further, or walk that little bit further and not have to hide the pain I am in, because I am not in any pain. I then, could try and address my ever expanding waist and boost by deflating confidence by being able to be that little bit more active than I am at the moment. It might even lead to me not looking at Vauxhall and Lambeth Bridges with longing and melancholy, remembering my lunchtime walk of old. Maybe, I’ll be able to look in the fridge without worrying if I will get up again. Then, there is the prospect of being capable of glancing at my blind spot. Hell, it may even allow me to think about my body just that little bit less than I do at the moment.

The sky is the limit, or put another way, anything is better than nothing and that excited me.

In case you are thinking that lytic lesions cannot be cured by physiotherapy, let me bring you up to speed. December’s MRI scan found that my lesions were improving and it was suggested that the continued level of my pain was part muscular, and thus, I may benefit from physiotherapy. Not just any old physiotherapy, tomorrow, I will be stepping foot into a magic place called the Royal Hospital of Integrated Medicine. The building is a shit hole, but hopefully, beauty will be on the inside.

Tomorrow, the chances are, I will be singing from a different hymn sheet, but the hopeful part of me, today at least, is getting just that little bit excited. It won’t happen over night, but who cares? I love a project.

EJB x

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Patent

Wanted – Somebody Who Is Good With Their Hands

Ever wondered why you never see a person walking with a walking stick and an umbrella? Even seen somebody walking with a walking stick getting absolutely drenched in the rain and thought, that’s sad, it’s unfortunate they do not have an umbrella? Or have you ever seen somebody with or without a stick, struggle to hold their umbrella for a period of time and pointed them out to your companion, as a pathetic weakling who does not have the strength to hold an umbrella upright?

Rain brings a multitude of dilemmas for the crippled. Going outside can be like Sophie’s Choice. City living really can be traumatic. Something needs to be done to protect the needy from excessive moisture.

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The time thus, is a time for action. Action and innovation.

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Have you ever wanted to help the disableds and did not know what you could do? Do you always feel like you could be more charitable? Are you handy with some tools? Do you have an overwhelming need to show off your skills? Can you weld? Can you smell titanium?

If you have said ‘yes’ to one or more of the questions above, then maybe two can become one, to create something rather special. Not a baby you fool. Despite having a wealth of creative imagination, I have little skill, it pains me to say in manufacture, crafts and neatness. I am seeking somebody to execute my creation of the walking stick/umbrella combo. The Walking Stick/Umbrella Combo (working title only). The device appears to be a standard walking stick, but the handle either stores an umbrella or holds a weightless umbrella attachment, allowing the unfortunate to protect themselves from the rain, without having to sacrifice their walking support or changing the position of their hand. It’s ingenious. I know, you don’t have to tell me.

Artist’s impression on graph paper

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So, if you think you can assist and we can make millions, do seek out contact.

If like me, you have no talent in this area, or simply, if you have no desire to take time out of your physically enabled life, then that is fine. There is no issue. No issue at all. You cannot help me. That’s fine. Just fine. I don’t care.

Emma Jane Jones
Designer

P.S. If you are feeling thankful right now that you can go out in the rain and hold an umbrella, and this sorry for those who cannot, but you cannot help my entrepreneurial ambitions, maybe just help out some cancer patients or something. Paul tells me he is going for a jog of some sort, in the east, it’s not quite welding metal, but it’s something. Here’s the link https://www.justgiving.com/PaulTompsett/
If you cannot shower my scheme with money, shower Macmillan via him.

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Bureaucracy

Have you ever filled looked at a form and thought that you would rather stick a needle in your eye and eat a horse manure pie, than to complete it? Of course you have. Well, that is just the predicament I find myself in at present.

Having cancer, and a cancer that effects ones mobility so much that they once asked a stranger to tie up their shoelace, is not enough to qualify as ‘disabled’, nor does it automatically entitle you to all the money in land. The Government, it would seem, require evidence. Mountains of it. I have spent the last week finding out just how much evidence is required.

To make my life just that little bit easier, I wish to be officially classified as disabled and I would like financial assistance with my rent. I have long been a fan of the welfare state, and although I have some misgivings about taking even more of your money, I feel now is the time to cash in on your enforced generosity. I have a cancer with no cure after all.

The only snag in my planning, is that I am not eligible to your money. Well, my landlord is not anyway. During a productive meeting with the Macmillan benefits advisor last week, I discovered that I cannot receive Housing Benefit, because my half pay still means I have £71 per week to live on after rent and council tax. Please note the £71 does not include utility bills. So, with my hopes dashed of receiving an extra £5 per week, I decided to think of a glass half full and be thankful that I did not have to complete another form, which required copies of my bank statement, two pay checks, tenancy agreement, medical diagnosis, proof of identity, two utility bills and Housemate’s salary details. Tick.

The kind lady, who I eventually won over with my manners and smile forty minutes into our chat, did think I would be eligible for free healthcare services. I know what some of you not based in the land of mince pies, shortbread and Stilton, will be confused by this statement, as you may understand our wonderful NHS to be free. Well, dental care, prescriptions (except when you have cancer) and eye care are not free for all. It’s the recession. So, I was given a twenty page form to complete, which only required a pay check, a year’s bank statement, thorough breakdown of financial assets (this was brief) and a utility bill. Bar a copy of my bank statement, that bad boy was completed yesterday. Tick.

When it comes to being disabled, the bureaucratic definition is somewhat more refined than the general public’s might be, and the definition varies between central and local government. Again, I will reiterate that all of this is to make my life that little bit easier, so it may surprise you to hear that to obtain a blue badge and concessionary travel, I needed to complete and provide the following;

* A 36 page form claiming Personal Independence Payment plus three additional pages explaining my physical limitations, which if approved will mean that in some quarters, including cinemas, museums and theatres, I will be classed as ‘Disabled’
* A six page form to my local council requesting free travel, because getting national agreement does not qualify me as disabled because lyctic lesions in the spine does not an automatic disabled make
* An online form requesting a Blue Badge, I am told that my local council may not allow me this, if I have free travel
* At least one, if not two, independent physical assessments
* At least one medical professional to back up my claims
* Numerous medical documents including a list of medication

Yesterday, I spent much of my day preparing this information. It was mildy satisfying, whilst being completely frustrating at the same time. It is a well known fact that government is a well oiled machine, so it wold be no surprise that I found the forms and information confusing. I received one form in the post that came with a stamped addressed envelope to return it, but I was separately informed that the council will only accept it if I return it in person. I feel like this could be a trick. I applied for the PIP benefit over a month ago and I received the form last week, thank goodness it was not urgent. Fortunately, there is a PIP helpline, which I phoned twice and I when I asked what information would be required, I was told that the help desk person had not seen the form. So, that was useful.

I will tell you something for nothing, I am constantly heading things about ‘Benefit Britain’ and people taking advantage of the system, but in order for somebody to understand these forms, they must be a frickin’ genius and deserve whatever they get. Even the ones who warrant the reminder to complete the forms in ink, with their own information and those of another.

Personally, I do not understand why there are so many hoops to jump. The system seems to be designed so that the applicant is branded a liar and then has to prove their innocence. Living with cancer is just so easy after all. It feels like a competition. My medical ailment is worse than yours… Fact.

Now, after all that form filling and ink, I have to take a trip to a photocopier, and then wait, and do a physical assessment and find out more about a mystery taxi service and try to recover from my transplant. Tick.

EJB x

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Just Dance

Picture the scene. You have not seen many people for a while and this is difficult because you constantly seek and need acceptance, attention and love to validate your existence. Your body is weak following weeks of doing very little. You have lytic lesions and as a result, have lost your rhythm. You are bald and obese and female. Your six year old niece hands you a remote control having just found ‘Jailhouse Rock’ on ‘Just Dance 4’. She says it is the song for you because 18 months ago you did a silly dance in the car to ‘All Shook Up’, and since then has decided that Elvis Presley is your favourite singer in the whole wild world. She says dance. You become anxious.

What do you do?

What do you do?

Throw sense out of the window and dance of course. Sod long term damage. You dance with a remote control in your hand. You feel warmth in your stomach as she bursts out laughing and runs to get more people to watch you strut your stuff in front of the television. You become competitive and want to take down the computerised man shaking his hips and right hand on the Wii. You keep ‘dancing’. For four minutes. You experience the most exercise you have experienced for seven weeks. You then have to lie down, such is your capability.

Cut to two days later and what do you get? Pulled muscles. Pulled muscles in your arms. Pulled muscles in your hands. And a stiff neck. Every time you move.

You have been warned. Game consoles are dangerous. They are especially dangerous when one is rebuilding their body after a stem cell transplant, cannot stand for longer than half an hour and gets a sore wrist from using their beloved walking stick due to lack of use.

Personally, you wouldn’t catch me doing it. No way. Not even. No.

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Englishness

Today I found myself on the tube or to go by its official name, the London Underground. I have never been a fan of the tube, it’s the sweat aspect of it really, people’s sweat in my face and my sweat on my pits. Anyway, I was on the tube because I was running late and even though I do not like it, and there are more changes, which does me no good at all, it is faster than the bus. Practical.

So there I was on the Victoria Line, with my walking stick. I walked through the sliding doors into the carriage, rattling my stick, to find all the seats taken. People looked up and me, but nobody was budging. Bastards. This threw me into a dilemma. The only reason I travel with the bloody stick is to avoid situations where I have to ask somebody for a seat. In terms of my manners with strangers, at times when I do not have steroids pumping through my veins, I am the most English of English people. I say sorry to people when they bash into me, I like to queue if there are seats, and as it turns out, I do not ask people if I can have a seat on the tube because I do not want to appear rude.

Ordinarily, I think I could have managed the 15 minute journey standing, but somebody on my train was taken ill, which added a further 20 minutes to the journey. People tutted. I rattled my walking stick some more and sighed. People did nothing. Instead, I had a couple who both needed to wash their hair, shove their instruments in my face.

I then had a hot flush, one really needs to sit during one of those bad boys, if only so there is something else there to absorb the sweat from my butt. And still, my fellow commuters, travelling outside of rush hour, were oblivious to my plight. Perhaps they were all afflicted with an invisible disability like me and were brave enough to face the world without a visible symbol of weakness, but the odds of that are pretty slim, like getting myeloma. I will take a gamble however and say that the majority did not have an invisible disability. The longer I stood, the more I could feel my back, invisibly poking me. Perhaps I need a badge, like the ‘Baby on Board’ badges that says, ‘Cancer. Weak Bones. Take Pity’. I did contemplate theatrically removing my hat, because I thought that my head plus walking stick would definitely result in somebody giving me there seat, but I vetoed that, because it would have meant that I had to carry my hat as well as my coat, stick and handbag. The longer I stood, the more I believed that everybody in my carriage was evil, and I mean urinate on puppies and kittens type of evil. By Oxford Circus, I was convinced that there were so evil, that they might actually defecate on those puppies and kittens too. Bastards.

All of that venom and anguish because I was too polite to ask for a seat. I say polite, you may say something else.

I’ll have to learn…

My name is Emma Jane Jones and I have a disability.

Fortunately my faith in humankind was almost restored on the District Line when a Mr Darcy-esque male with manners, offered me his seat without prompting when I changed tubes. I felt a bit sorry for him, not because he was wearing a pointy loafer, but because I was only on that train for a stop. But my, did that seat feel good. I sighed with pleasure. Trust me, that’s not a pleasant sound for anybody. I then felt sorry for everybody on the carriage. Well, the people not listening to their iPods.

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Thrusting

Could it be, can it be, that the radiotherapy has started to work? No pain for two days. Hip pain that is. I have pain elsewhere. Obviously.

That said, less pain has to be a good thing right?

👯👯👯

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