Tag Archives: Living

♿️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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I Give It A Year

Have you ever been to a wedding and attached an expiry date to the happy nuptials? If I had done this in my past, I would have almost always been wrong. Being wrong takes the guilt away from having the thoughts in the first place. Just over 11 months ago, I attached a multiple timescales to something that was not a wedding. The successful relationship between myeloma and my stem cell transplant, had me predicting the length of the union many times over. At my most positive, it would last so long that divorce was a fuzzy dot somewhere in my future. My worst nightmare was that it would not work, closely followed by it failing within a year of my transplant. My transplant was on 17 July 2013, and I have relapsed. There is no happy anniversary for me, just a fuzzy dot somewhere in my future where I may once again be as happy as I was a fortnight ago.

I am not ready for this yet. Last Thursday, when I was told that my paraprotein may have gone up, my overriding thought and one that I shared, was that I was not ready for it to come back yet. On Monday, when I received a phone call telling me that not only was my previous test correct in it’s finding of a measurable paraprotein, it had risen again to 20, I knew then that I still was not ready.

I feel like I put my life on hold. From August 2012 to November 2013, my life was on hold. I had a hold on my existence, to ensure that I did not burst. After November, when the wondrous ‘remission’ word was spoken , things did not return to my new normal overnight. It was hard, much harder than I thought or dreamed it to be. I had to teach myself how to exist in the real world all over again, with myeloma as my sidekick. I still had not perfected it, but from March, I would say that I finally started to enjoy trying to. I was in my infancy. I am not ready to let go of that yet. I have more to do and I have more to give. I cannot do these things when I am chowing down dexamethasone and having to treat shitting like an event again. One cannot seize the day when they are so heavily constipated that they vomit and soak their t-shirt in sweat that smells like oranges and onions.

I was two Velcade injections away from relative freedom, and even though I feared jinxing things, I was planning things. I was not just looking a month ahead. Hell, I have plans for October. October you gasp, positively crazy talk. Clearly. Closer than that, I had booked myself onto a weekly film course because I was able to retain more information than I have for a long time, I had more energy and most importantly, I thought it would be good for me to do something just for me. There are more things in between, but even if there was not a specific date in my diary, I looked forward to it, just because I could. Hell, I might have even had time to meet a gentleman fellow. I might have had time to grow somebody else’s egg in my belly. That all goes out the window now. Relapse means that at 30 years old, my life is on hold.

It’s just not long enough. I deserve more. I want more.

Of course, a relapse was an inevitability with myeloma and the treatment I had. I knew this, we all did. That does not take away my sadness at no longer being able to say to taxi drivers in an attempt to get a discount/free ride, ‘I have myeloma, a cancer, but I am currently in remission’. If they were lucky, or if I was talking to an acquaintance and delivering the Road Show, I might have added ‘I feel the best I could feel.’ It’s going to be a while before I can say that again. If I can say that again.

I had things to do. I have not even had time to write my blog about how I manage to hold down a full time job, how that makes me feel and the sacrifices I have had to make to do that. Nor have I blogged about how I was told off by the Medically Trained People for doing too much resulting in me reaching for the Oramorph. Apparently the increased and continuing pain was muscular, because My Myeloma was not active and thus there was not evidence to suggest something more sinister. That might not be the thinking now. The back and shoulder pain is funny, because the thinking was that I injured my shoulder because I forgot that I had myeloma and lifted a suitcase one too many times, when we all know that I should not lift anything. Maybe that is why this hurts so much, because I started to believe that I was more than my illness again. Well, for that sort of folly, myeloma has punched me in the face and stood on my nipple whilst wearing a stiletto heel.

I will find out tomorrow what my treatment is going to be. I’m pretty sure I have been here before. A friend yesterday said that given my previous experience with crappy myeloma, knowing what to expect is a benefit. She may be right of course, but right now I see fatigue, financial woes, steroid crashes, tin mouth, bruises, loneliness, frustration, constipation, insomnia and my bed. Lots and lots of time in my bed. I have previously crowed over escaping from my Bermuda Triangle; that was shortsighted.

The Support Network tell me that I am strong enough to do this again, even though I have not had enough time to replenish my good cylinder (yes that is making a comeback side by side with my paraprotein). I know that I will have to find the strength from somewhere, but finding the strength to exist and not live, when everybody else around you is living, is exhausting. It’s so, so exhausting. I do not want to lose myself in it. I do not know how to preserve me. I am not as strong as I was two years ago. Myeloma has already taken that away.

So then, here we are… Welcome to My Volume II. It’s going to be something, I just do not know what yet.

I suspect I am going to need more help this time around. And lipstick, lots and lots of lipstick.

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EJB x

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Woe is Me

And so my thirtieth birthday has passed by, and with the beauty of hindsight, I can tell you that it really was not that bad. It is important for me to keep you updated on the fact that I had a whole week of feeling special and loved, because my last blog on the subject was rather negative. Also, everybody just loves a boaster. I am a boaster.

After I expressed my distaste for my birthday and said how it reminded me that I was going to die and miss out on a future, I received a comment on my blog telling me that I should stop with the ‘woe is me’ comments.That was not the opening comment, oh no, I was profoundly told that my life is what I choose it to be and in order to fight myeloma, I had to ‘start with a decision to do something’. The gifts just kept on coming, and I was advised to not feel sorry for myself, and to achieve this, I should live my life by being active. By ‘active’, the suggestion was that I could ‘walk, run or bike’. It concluded, inspiring creators of memes everywhere, by saying a ‘death sentence’ means that I have time to ‘live before X day’. And so, I was ordered to ‘live it’. Exclamation mark.

Inspired, enlightened and motivated by the kind guidance a lesser person would consider a sales pitch, I decided to avoid my blog for a few weeks to allow myself the chance to ‘live’. I mean really live. I have after all, spent every day of the last two years in a self indulgent, wallowing pit of despair, not affording myself the opportunity to really live. The advice, both insightful and medically responsible, came with a slogan of ‘Nutrition + Fitness = Health’. POW and WOW.

I acknowledge that my last blog about turning 30, was not something one would read to a four year old as a bedtime story. It was angry and pessimistic. It was also needed. They were the thoughts I had in the lead up to my birthday, and I needed to voice them by writing them down and then dumping them into the internet ether. It is how I manage all my negative thoughts and it then allows me to see the positive. After I pressed publish on the morning of the 24 May, do you know how many other times I have entertained thoughts about my premature death and never born children? Not once. Not at all. Not even. Those thoughts are hopefully not to be seen again until the 17 May 2015. With the thoughts banished, I was able to just enjoy the things I used to love about my birthday. Enjoy it I did, and it lasted for 9 whole days.

‘Living’ is grand. I spent the afternoon of 24th May until the afternoon of 27th in Berlin. There, in lands all so foreign, I was able to do my best impression of a middle aged American tourist whilst the people I travelled with did their best impression of something else entirely. My eyes, once again, were able to see things they have never seen before. I relish that, more than jogging. As much as my innate pessimism loathes me to say it, I had fun. Boy, did I walk straight into ‘living’.

Inevitably, in the immediate days after my return, I required rest. I rested because I felt sorry for myself and not because it is an essential part of my ability to function. I was tempted to go on a bike ride, but I have been limited to four five minutes walks a day by the people who are medically trained, so I chose sleep instead. The rest days also involved some working, because I am hell bent on giving up and I only need money to fund my Netflix account.

Sandwiched in between the birthday fun times, was a doctor’s appointment and a dose of Velcade. Velcade as you all know, has such positive side effects, that any one intent on giving up on life, will benefit from intense neuropathy, fatigue and nausea. I do not go every other Friday to have a dose of Velcade and feel this way, because it will buy more more time until X day.

In the days after my rest time, I was treated to a myriad of gifts and fun and love. I had a good turn out for my birthday drinks, which was probably just the way in which my friends decided to tell me that I needed to ‘live’ more. I felt spoilt and put it simply, I loved it because I love me. There is nothing better at making one feel wanted in the world, than positive attention. Lots and lots of positive attention. 💖💖

It has been two weeks since I said goodbye to my birthday for another year, and in the time since then, I have once again fallen into the pit of self pity that is my myeloma consumed life. My self pity looks like me working, the occasional act of socialising, a Q&A at the BFI and Mum Love. I have been incredibly hard on myself.

To be clear, there is absolutely no way in which I feel like I have not been ‘living’ or trying to live, nor do I feel like there is any decision for me to make. I will say this once, I am incredibly proud of the way in which I have conducted myself since I was diagnosed. I have managed every change, every hurdle, every bunch of fives, in a way that works for me and I hold my head up high as a result. The hurdles, by the way, includes when it has become apparent that I can no longer ‘live’ like I used to. Occasionally, I will have a bad day, or if last autumn is an example, a bad few months. When the bad mood wafts over me, it is not about me being melodramatic, it is me being truthful. I have bad thoughts and the worst thing to do is to pretend that they are not there. I might, for example, have some really bad thoughts about the fact that I cannot, for medical reasons, walk, jog or cycle or even worse, have thoughts about being told that doing these things would improve my ‘life’. I might have to voice this anger, but once I have, I will move on until the next thing happens that tries to pull me down. I will manage that in turn.

Maybe it is a flaw in my personality, but I will not accept any criticism on how I behave or how I act on the subject of myeloma. It is life and I will deal with the daily reminders however I see fit. I made my decision a long time ago, and that decision was to do exactly what I am doing. I have made concessions, I cried in my bed and contemplated my death. I have also loved and have been loved, I have laughed and smiled, I have found fun in the mess and recently, I have seen places not in my Bermuda triangle. One could describe the above, both the good and the bad as ‘living’, but if I were to do that, I’d probably vomit all over EMan.

All in? I do not think I have done that badly. Also, I cannot ride a bike.

EJB x

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Doubt

On Thursday, I met with the transplant team, well, a transplant doctor, and I was introduced to the wonderful world of transplant options.

I have made my decision now about what transplant I will have, but it was useful to go through the options once more, so I have a rough idea of my future options. The one thing that became patently clear during this consult is that I will always be plagued by doubt. I will be plagued by doubt that I have made the wrong decision about my treatment. There are no guarantees in myeloma treatment and the truth is, nobody knows what the right answer is, until after. After I am gone, or if I am lucky, if I made the right decision and all is going well in twenty years time.

First things first, I was a fan of the doctor. He introduced himself to me by his first name and this does not happen often. In fact, it has not happened since my diagnosis.

In terms of transplants, there are three available to me, well, three and a half. The half is dependent on my results after the auto. Each option, is about time, my time left, and odds, and nobody knowing what is the best one for me. I suppose I am fortunate to have these options, because many people don’t. People do not have a sibling donor match and for those people, the auto and drugs is the only option. I have to see that my sister’s gift is a benefit to me, I just wish sometimes that it was not me making the decisions. There are too many variables.

Now, it was useful for the doctor to speak to me like I was not medically trained. I was provided with a helpful set of charts, which shows the risk of the procedures against the chances of the myeloma returning. Visuals are always of some assistance.

Auto
The first option and the most traditional, is the Auto. My stem cells. This has been around for longer and the stats, it’s always about the stats, say that there is a 2% mortality rate during the procedure. The procedure comes with a guarantee that the myeloma will come back, but nobody knows how long it will be before it does. Maybe a year, maybe three, maybe longer. Nobody knows. This is what I am having.

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Allo
This involves donor stem cells entering my body. The procedure comes with a 30-40% mortality rate, but a 40% (according to this chart, although I have heard 10-15%) chance of a cure. The big C. The Cure. I have spent a considerable amount of hours considering this, and the truth is, I am not ready for the risk. I want to live now. A one in three chance of dying, that may or may not come with a cure is not a viable option for me right now. I could put my body through all of that for nothing and then run out of options. I am not there yet. I am not ready to die and the chance of a cure is too small for me to run that risk. You may think that this decision makes me a wuss, maybe it does, but I am not betting with my life. Not yet.

Here’s the problem then, if I decide to have one later down the line, the mortality rate rises to 60%. I am not there yet.

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Reduced intensity
Now, this one is complicated. My understanding is that it is a reduced version of the Allo, which comes with a little bit of my own. This procedure has a 15% mortality rate. The Medically Trained People disagree with each other over its effectiveness because this, in the terms of myeloma is relatively new. Not new, but the stats cannot tell you if it can be a cure, because there has not been enough time to prove it. They do not routinely do this at UCLH. But, they do have a trial to see whether doing this reduced intensity directly after an Auto (three months after), has long term benefits. I would be willing to give this a go, but my body would have to behave during my auto to be considered. We know my body rarely behaves.

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Another problem I have, in addition to the risk of death and not knowing whether the decision I am making now is correct, is that my sister is not an ever ending resource to me. If at any time I have hers and I experience something called graft versus host disease and It comes back, then I cannot use her stem cells again (well, theoretically I could, but it would not be useful). Though, confusingly, a little bit of this disease is a good thing; it fights the myeloma. A lot of it is bad, it means long term illness or, you know, death.

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I know I am not a statistic, I am a person for the doctor told me so, but I do need to listen to the stats. At the start of all this, I was up for the Allo because it comes with the possibility of the Big C. Now, I have had the time to think about it and what the procedure means and where I am with My Myeloma, and what I want is time. I want time to live. Hypothetically, the Allo could give me more time, but it could also take it all away much, much sooner.

With all things myeloma, I think that time will help. Whilst the Medically Trained People may know what drugs are coming in five years time and the Big C is not in that bundle, there may be something in there to prolong the inevitable. Or in ten years. Nobody knows the answer.

For now, I am going down the safer route and I have to live knowing that my decision may be the wrong one.

Now then, what’s for tea?

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100 Days

Today marks 100 days since I was diagnosed with Multiple Myeloma.

In 100 days my world has changed beyond all recognition and if I think back to that moment on Friday 17 August as I sat in a bed on the Acute Admissions Unit of UCLH with Mamma Jones and Big Sister, and I was told that I had cancer, I had absolutely no idea just how seismic what I was being told was. It was a game changer. Try as I might, my life has been irreversibly changed by what I was told on that day. It has taken me this long to realise that I will never get back to “normal”. My former life is gone. My Myeloma is here to stay, not in this incarnation, but it is here to stay. It will always be in the back of my mind and save for a miracle, it will always come back.

In 100 days I have had 16 injections of Velcade, 16 doses of chemotherapy, taken 240mg of steroids, been exposed to radiation, been operated on, experienced one bone marrow biopsy, had at least 25 blood and six pregnancy tests, endured over 25 cannulas and witnessed the disappearance of my veins, poured my heart out in four counselling sessions, dealt with one full body MRI scan, three CT scans and four X-rays. As a result, I have lost weight and half of my hair, and gained facial hair.

In 100 days I have had to understand that some of my pain is irreversible and I have sustained irreversible nerve damage with my treatment. My bones may never heal properly. I know this now.

In 100 days I have been overwhelmed by the love and generosity I have experienced from my friends and family. The visits, the messages, the food, the television, all of it. Since I was diagnosed I have had to learn that some people are better at managing my diagnosis than others, and that this is okay. It does not mean that they are anymore or any less of a friend, even on my dark days. My Myeloma is not just about me, it affects all the people I love and who love me right back. We get through it day by day, week by week, and as we go forward, year by year. They all continue to be the reason I wake up everyday and take the drugs that make me ill.

In 100 days I have not had a sip of alcohol. It’s actually longer than that, it’s 106 days. This is gargantuan. Gargantuan.

In 100 days I have had to become accustomed to a completely new schedule; my body and my life is now controlled by the drugs and my treatment. Even my hair falls out on schedule. Days 1-4 start reasonably well, and I have energy until the evening of Day 4. Days 5-8 are spent sleeping, feeling sick and losing hair. Days 9-11 I have most my energy back before my immune systems drops for three-four days on Day 12. Days 15-21, I feel as well as I can do until we hit Day 1 again so I try to do as much as I can for myself. Next week all of this may change and I will have to learn a new schedule.

In 100 days I have been to the cinema four times. This is unheard of. As I said at the start, my life has changed because of My Myeloma.

In 100 days I have cried more than I have cried in the 20 years prior to 17 August. My Myeloma has made me show and feel emotions that I never expected to feel at this age, this often or this strongly. I survive on an uneven balance of self pity, grief, anger, fear, guilt, love and gratitude. Realising how many people I love, has possibly been the most difficult and overwhelming thing. I look at my friends and family, and most the time I want to bear hug them and thank them for what they are doing and beg them not to stop. Ever. Sometimes, I catch myself on the verge of crying mid conversation with them. Obviously, I try to stop myself from doing this and most the time I am successful, because I have to keep some of my old personality before the myeloma takes over. Heart of Stone Jones, that’s me. Forever and ever and ever.

For 100 days, I have wished that I do not have myeloma. Everyday, at least once, I will question why this is happening and I will all of this to be a bad dream. It’s not. My life is not Dallas.

It has been 100 days and there is no end in sight. I am not doing a degree and thus there is no agreed end date. My Myeloma has a mind of its own and therefore my treatment will continue until it is gone. I know that this means that I will have to stay strong for another 100 days and then some.

Bring It On. Again.

EJB x

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