Tag Archives: vacation

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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Holiday Celebrate. Holiday Celebrate.

August 20th, T13, University College Hospital

“But we are going on holiday in November, she will still be able come on holiday won’t she?”

“No. No, she will not be well enough to go.”

✈️⚓️☀️✈️⚓️☀️✈️⚓️☀️✈️⚓️

When those words were spoken 21 months ago, I had absolutely no idea what they meant. I did not realise what not being well enough to go on holiday meant, nor did I have absolutely any idea how long I was going to have to wait to feel well enough to go on holiday. I most certainly had no idea how difficult I would find dealing with the fact that I could not go on holiday. I was definitely shipwrecked upon these fair shores.

We all know that myeloma is like a lifelong prison sentence; it is one big fat miscarriage of justice. For the last 21 months, I, unfortunately have been held in maximum security. Not a maximum security on the UK scale of prison decency, I am talking about American style, 23 hours a day lock down that would feature in a sensational Louis Theroux type-documentary about how barbaric imprisonment can be. That is how I have seen parts of My Myeloma life.

In my mind, nothing exemplifies the hardship that myeloma represents more than the inability for me to go on holiday. A desire that grew and grew after I was told that I could not do it and I grieved when it became evident that I was not physically capable of doing it and I would not be for a very long time. My freedom had been taken away. I was trapped in a triangle of the flat, Mamma Jones’ and the hospital and they were the only places I packed for.

In those dark times, when crying myself awake was a normal occurrence, I dreamed and I planned of so many holidays. I was promised some too. When there is no chance of one going away, one’s imagination really can be inventive. The idea of a holiday, to be more specific, going abroad on a holiday was my hope. My hope and my pain. It was a target and one that I could not help but set my sights on. It became a symbol of my health improving and thus if I discussed going away, my response would have been as emotional as if I had been talking about my potential recovery. Going away means freedom from my daily myeloma toil. It’s a break from it.

My last trip abroad was in June 2011 and the last time I travelled by air a volcano in Iceland decided to be a dick. Needless to say, my mind has been short on new discoveries of late; the East Coast Mainline and Tottenham Court Road, whilst special can become tiresome.

No more though. No more. I am at Gatwick Airport and my bags are nowhere to be seen (I like to think they are also on the plane I am sitting in). Any minute now, I will be forced to turn off my mobile phone, a small sacrifice to make for in a few hours I’ll be in Venice. After all those months lying in a bed, building up my energy and hoping, I am actually on a plane en route to a land that is not ours. I am on annual leave. Not special or sick leave, actual annual leave.

It has been so long coming.

You could say I am free. I would not, for I am not that cheesy.

I am going on holiday!

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And myeloma only cost me £154 extra for insurance. A bargain. I will tell you about all the other planning some other time. Right now, I am celebrating.

️⚓️☀️✈️⚓️☀️✈️⚓️☀️✈️⚓️

EJB x

P.S. Mamma Jones is pleased because she was just hanging out with Simon Callow in the club lounge. Swish. To be sure.

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