Tag Archives: Mums

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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Mums

Yesterday, as I waited in the clinic for my appointment I was greeted by an uncommon sight, another young person. I should be more specific, there are always twenty somethings around, the nurses for example predominantly appear to fall within my age bracket. You will also find a lot of visitors who were born in the 1980s hanging around with their loved ones. You do not see many young patients. Yesterday however waiting for treatment with all the other cancer patients, was a young man, in his early twenties, sitting with his mum.

I did a lot of waiting yesterday, so I used some of my ninety minute wait for treatment to watch them. It passed the time. He didn’t have to wait as long as me, and before he was called through to what I call the Cannula Bay, the young man and his mum were partaking in some jovial conversation. He was mostly playing on his phone and she was smiling, looking like a mum with a bag of food products. He was wearing jeans, a t shirt and a nice loafer. He looked normal and were it not for some bandages on his arm and the slab of pills I saw him take, you would have thought that his mother was the patient because in the law of averages, that would be the most likely scenario and the one I see every time I am in the clinic. After half an hour of watching them and a packet of Skips later, the young man received the enviable tap on the shoulder and was called through to the Cannula Bay. He got up, walked through the reception chairs and gave his mum a quick tap on the shoulder. His mum watched as he walked out of sight into the Bay, and then as soon as he was seated, she turned, looked at the red and white floor with the inspirational quotes and began to cry.

I then hijacked her private moment, and also started to cry.

By the time the young man returned, I was still waiting, but his mum had composed herself and produced a muffin for her offspring and they made their way to the big red comfy chairs at the back of the floor. And there they sat and remained for the duration of my treatment, occasionally breaking from speaking to each other to speak to the Medically Trained People. He was receiving drugs via a cannula and all the while, the mum held a sturdy smile on her face and continued to produce food products as and when they were required.

I do not know how mums do it.

I know that cancer in a child is not the worst thing that can happen to a parent, but it is not exactly a celebration. I do not think a mum can prepare for this. There is not an insurance for this and I sincerely hope it is not something parents envisage. Future, should only be for the good stuff.

A mum should not think about having to care for their child with cancer, let alone have to care for their child with cancer.

This isn’t supposed to happen.

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