Tag Archives: photos

 The Notice Board

Way back in 2013, I spent 11 days of my life in a room of great bleakness. It is difficult to conjure up the mental differences between slight and great bleakness, but  for me it was a room that encompasses everything that was bad with this word. If only it were the interior design of that room that was a problem. The centrepiece, if such a room could be deemed to have a centrepiece that was not its bed on wheels, was a grey notice board with three signs to the right hand side of the board. The biggest sign told me how to wash my hands properly (but I think I moved it there) , the second poster told me if and why I would be eligible for the Patient Transport Service and finally, there was a leaflet, that if you looked really hard at, you could see the 12pt font printed list of all the additional fatty foods I could order from from the canteen due to my not eating right and the neutropenia. I still cannot get over the fact that eating badly is considered to be better for you than a piece of fruit in any situation, but there it is. The PTS sign had some late 90s clipart on in and somebody had definitely used the ‘Tools’ section on MS Word on all the documents.  I hated that notice board. I have also realised that I still hate that notice board. 

The closer I got to April’s transplant, the most frantic I become about ensuring that I would never have to look at that grey notice board again or it’s posters. One of those things could not be achieved because all hospitals all over the land, have posters telling visitors how to wash their hands, and I currently have my sight and can pee, so put two and two together. Developing a board that would be nice to look at became almost integral to my planning. I mentioned in to friends and the importance of of was mentioned in my counselling sessions.

All in all, I think I visited four art gallery shops, the BFI shop, two Boot’s Pharmacists for printing purposes and Amazon. I had mini pegs, string two different styles of pins and just under 15 postcards to accompany my ten or so photographs. I was going to be the best notice board that had ever been nailed to a wall. 

And then, realistically being £20 lighter, it turned out that I did not need it during Transplant Number 1. I am not kidding when I say that I was slightly disappointed by this. I was disappointed that I was not become sick enough to to be admitted to hospital to see my notice board come to fruition. 

Unlike the majority of you folks out there, I realised that I would very soon be given the opportunity that did not involve committing a crime or other institutionalisation, to be in a room with a notice board. I hoped and I waited and I packed my ‘art’ with wanting. Then last Wednesay happened, I was admitted. With breath that was baited, I was taken to Room 10. I knew the word ‘room’ meant I would be in my own room, but in the few short pushes in the wheelchair I closed my eyes and touched EMan’s paw. It worked, and  because when the door opened, I saw not a notice board but a white board. I’m an artist of many a media, and just as soon as I received confirmation from three different Medically Trained People that the board was not there for medicinal reasons, it was go go. I was ready for my Art.  Given the change in background, Mamma Jones had to go out and buy scissors and tape, and given the passing of time, I misplaced a few photographs and postcards. 

In the end, not all of my support network was represented, and I had to explain to far too many people that some of the photos were not of my own (presumably failed) wedding, but it worked. I had directed a little something of my own to make what was a 7 night stay in hospital, that very bit not bearable.

  

And yes, it had fairy lights too.

And double yes, it’s back to being a white board.

EJB x

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The Vacation

And so there it was. A holiday, a vacation, a trip to somewhere that was not the hospital, Mamma Jones’ or a basic hotel in Wakefield located off the M1. My first holiday post diagnosis and post transplant is complete, it is done, it is over. Finito. As I type this, I am sitting in a bar surrounded by my hand luggage, EMan and Mamma Jones waiting to disembark from this tiny boat from where we will begin our journey back to London Town. I am using this waiting time most productively and I am reflecting. I will probably still be reflecting when I return to London.

I love reflecting. I seem to reflect all the time. My permanent state of reflection was, as the title suggests, present throughout the last seven days. If anything, being in different surroundings and different circumstances, outside of my protective myeloma bubble, made me reflect more than usual. I know what you are thinking and yes, ‘crikey’ would be appropriate right now or indeed so would ‘shit, here she goes again’.

I can honestly say that this holiday has been the most delightful seven days I have experienced in a long time. I may have been a lazy, cruising and thus slightly unimaginative Brit abroad, but in being that, I have been able to safely see beauty in things that one would not find in my 21 month long Bermuda Triangle. That is all I wanted. I have sailed into various pretty ports, enjoyed the luxury of using my credit card for multiple massages and acupuncture, sat and ate and expanded and took so many photographs that only I will ever be interested in them. I have been to Venice, Kotor, Corsica, Corfu, Genoa and Rome, and rediscovered my love of a sunset. Tasty.

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Of course, things are never that straightforward. Everyone, accept the self entitled elderly folk on this boat, knows that I have been delivered quite a curve ball in life, limiting my enjoyment of it. I can say with a tongue most bittersweet that going on holiday, whilst wonderful, highlights a number of the the bad things myeloma loves to dish up at the all you can eat buffet. My current state of reflection may exaggerate it, but I knew on Day 2 that myeloma makes the act of a holiday hard. I knew this when I was forced by my body into going for an afternoon nap, whilst simultaneously feeling I had just been kicked in the back by an ass as his buddy, the wild boar attempted to remove my armpit. Everyday since has featured a similar period or periods of sheer exhaustion, zombie-dom and an uncontrollable desire for Oramorph. Evidentially, these periods have been at odds with my overall excitement and determination.

A holiday by definition is a period of leisure and recreation, and will usually experience an interruption to one’s schedule. For me, my daily life is structured far more than I wish it and this is done to allow me the chance to feel like I am living it. In going on holiday, I naively assumed that I would not need to factor in as many break times and that my sheer will and excitement at being on holiday would overpower My Myeloma. I was incorrect. Myeloma makes holidaying hard. It makes it hard because I had to wait so long to have one skewing my expectations, a change in routine impacts on both my pain levels and the productively of my bowel, I could not swim not sunbathe, and most of all, I felt like my need to lie down or go to bed at 22:00hrs every night was wasted time. It was like resetting my understanding of a holiday.

And this is the bitter part. I knew my holiday reality, I think I did anyway otherwise I would not have agreed to a cruise or planned the excursions I did, but I think I really hoped that My Myeloma would not impact on my ability to do whatever I wanted to do. The only limitations on a holiday should be monetary and I have always found ways around this. There is no way round the fatigue.

Fortunately, I am well versed in managing the disappointment myeloma produces and thus, the sweetness far overpowered the bitterness. There may have been frustration, but I managed to find the fun in every good hour my body was awarded. I even have a few achievements in physical capability, which has made me think that in a few years, maybe my body will let me walk up Monument. Who knows? It’s a nice feeling to hope for something that feels remotely within the realms of possibility again.

It was silly of me to think that a holiday would be any different to any other part of my life when it comes to my relationship with myeloma. There are limits and concessions to be made everywhere.

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And so there it was. A holiday, a vacation, a trip to somewhere that was not the hospital, Mamma Jones’ or a basic hotel in Wakefield located off the M1. It is complete, it is done, it is over. As suspected, this holiday meant so much more to me than simply a holiday. It was a huge milestone and one that I gained more from than what it showed me I had lost, and my
my my, is that a wonder.

EJB x

P.S. In 10 days, I am off to Berlin. There, I will no doubt learn more concessions whilst pretending to be like any other 30 year old. One is excited.

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