Tag Archives: National Trust

♿️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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Operation Build Up

Building up my strength is no walk in the park, for I would not be able to go for a reasonable walk in a park. Clearly, it is comforting to know that I am now in a position where I feel like I am ‘building myself up’, but it is more difficult than I anticipated, in the various scenarios I had in my head prior to my transplant. For example, I did not envisage that I would find it just so difficult to motivate myself to wash, and think about it, I don’t even have hair to wash.

Last week, I left the house three whole times. That’s right, in seven days, I left three times. Thankfully, there is a bit more space here in Mamma Jones’ house for me to wander, than there is in my flat. That benefit is balanced by the fact that in the working week, I am alone between 08:00hrs-18:00hrs, bar two pedigrees including one who actually likes me. When I am tired, this does not matter, if I get a window of energy, it does for I am trapped. The beauty of ‘building myself up’ is that I cannot predict when I will have a window of energy. There is no rhyme nor reason to it, and for that reason, I am reluctant to make plans (disappointing others hurts my forehead). One minute I could be lying in my own filth and the next, I am able to the my times table once more whilst simultaneously leaving my bed. The windows do not include cartwheels just yet.

As part of my recuperation, I did consider that I would have lone windows and I have activities for these. These activities are productive, but whilst they are productive, they are nothing like me crossing the threshold and entering the big wide world, which I cannot do alone. Getting dizzy next to the River Welland just would not do. Doing things in the outside world, has a different response to my body. I described the sensation to a friend at the weekend; for every two hours of activity in the real world, I can guarantee needing to spend an exhausted eight hours brain dead and horizontal as payback. My experience, thus far, is that I can feel fine and dandy one minute, and the next, well, I just don’t. Inconsiderately, the fatigue does not appear when I return to the house, it can actually happen anywhere. The colour can drain anywhere.

Yesterday, as part of Operation Build Up, I used my National Trust membership and went on a 20 mile trip to Isaac Newton’s family home, I even saw the genuine apple tree. It all looked very pretty. I say it looked very pretty, for I was completely incapable of taking anything else in. I blame my activities the previous day. The science museum there, full of all these fun little experiments, was lost on me. I just like the sound of the pool ball hitting some bells. Ding, ding, ding. It was good. The day before, I spent a good five hours, two and a half of those were outside, with Big Sister and her offspring. The offspring can be pretty tiring when you do not have cancer and are on day + 31 of a stem cell transplant. I was wide awake with them, until I wasn’t, sleeping on the sofa incapable of moving, but able to complain.

The post outing fatigue really is frustrating. It is more frustrating than the insomnia that comes if I have not done enough in the day. The first night I had insomnia, was the first night I knew I was improving. The improvement is just so slow. I had hoped that by now, I would be gearing up for a return to my nation’s capital, but I am not capable of looking after myself yet. I am 29 and I cannot look after myself. Catch.

Operation Build Up, has two distinct parts. I have mentioned before that one of the many benefits if myeloma is that one does not just have a deadly disease, they also have varying degrees of weak bones and pain to contend with. In case you did not get it, I do not think that this is actually a benefit of myeloma. Anybody who has spent a significant amount of time in a horizontal position, would, I imagine, experience some difficultly when trying to resume their normal duties. Stiff knees and jelly legs. I had/have that too. For me, my return to vertical living, adds a whole new challenge, separate to my fatigue and much, much much more painful. I have a back. I am telling you I have one, because apparently, it is a little attention seeker at the moment, and it wants everybody to know it is there. I can walk for less than five minutes before I feel it. I am attempting to carry on in spite of the pain, this is Operation Build Up after all, but it gets to the point where I cannot and I am forced to lie down, even if I do not want to.

I would say that the pain I am experiencing, is reminiscent of the pain of September 2012. I struggle to stand, getting out of a car is a treat, I need that stick more than I would like, and when it is really bad, I waddle. Last time, it took me two-three months to walk far distances without experiencing the pain and three times as long before I could carry more than one bag of shopping (I am not sure if I should be doing this anyway). I do not want to have to wait for two months. I do not want to have to sit down or lean every five minutes. How am I expected to cook? Hang on, I can’t do that anyway, for I do not have the energy. In some ways, the pain is more frustrating than the lack of energy, because I have already overcome it once. It feels like regression, and I do not like that. Combine the aches, with shortness of breath caused by the fatigue and I look like I am from Boston, Lincolnshire if I were to take the Daily Mail as gospel. At times like this, I start to get angry with the lovely locum GP again and the delay she caused to my diagnosis. Without the delay, maybe it would not be as bad and I could recover with more spend and agility. Maybe.

It is what it is though, and getting angry and overly upset is not going to improve it. It is a matter of practice, exercise, patience and pain. I have to let the pain in, in order to improve. I am going to have to be a bad ass. It’s doable. Plus, I can sit smugly in my bed, pleased that I requested an appointment with a physiotherapist having anticipated some difficulty in this area, and have the exercise technics on a piece of A4 paper. Listen up boys, I will be strengthening my pelvic floor. Woo. They key to this though, is doing them.

With that then, I am going to get out of bed, and do something for as long as I can, before I can’t.

Get to it.

EJB x

P.S. Just to give the full spectrum of my world, I am still suffering from nausea. It’s morning sickness really, for I predominantly get it as soon as I wake up and that generally causes a delay in me getting up. I attempted to stop taking the pill that prevents this, for that causes something to get worse in my bowel, but for the time being, I cannot. I need to pop that medium strength pill at least once a day. It’s okay though. I am not up the duff.

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