If I have said it once, it is worth repeating, going on holiday when one has Myeloma is an expensive, administrative nightmare.
My recent holiday, was booked before I relapsed. In it’s origins, it was meant to be a holiday of relief. Relief for me that I had made it through two stem cell transplants in 2015 and lived to tell the tale. Relief to my parents that they were able to use their annual leave for something that did not involve staying with me in two different hospitals and then caring for me when I was discharged. It was exciting and it gave us all something to look forward to. There was promise too, promise that I would be healthy enough to enjoy it without threat, and promise that I would be in the position where I would be able to financially contribute towards my own holiday. I am a 32 year old adult after all.
Two months after we booked said holiday, I relapsed, thus evaporating all that promise and relief we had when Mamma Jones made the booking. This left five months of frought waiting, full of what ifs, maybes and fear that for whatever reason, I would not be able to go. Underlying all of this was the very real question that if the worst did happen, the £250+ travel insurance policy I had taken out would be sufficient to get my parents their money back.
As the five months went on, I found myself not simply needing a holiday because I had not been on one since 2014, but needing one because my life had become dominated by my treatment. I had had no time to come to terms with my diagnosis and my prognosis, and unknown fully to me, I had fallen into the the worst period of My Myeloma journey thus far. That’s not hyperbole, I’ve been metaphorically stuck in a mental well for half of 2016. Five months of constant treatment, looming unemployment, living in the triangle of my flat, my parents’ house and my hospital, had become nothing if not mundane, uncertain and depressing. To put it very simply, I needed the break. An escape.
Remember that I mentioned the holiday being an administrative nightmare? Well, two weeks before departure, in response to a form I filled out declaring my disability, which I completed to make sure I had the necessary assistance whilst we were away, I was told that I had to get written medical approval before I would be allowed on the ship. Drama. That’s right, I was going cruising. AND, there was drama. In the end, after an anxious wait, it turned out to be a fairly straightforward process, but I ask you, how many 32 year olds would have to jump through so many hoops before being allowed to go on a holiday?
Logistically, I had to make sure I had enough medication for the 12 night cruise, which creates much checking, double checking and a healthy supply of dosette boxes. Mamma Jones and I had to barter with each other over what would be reasonable activities for us to do ashore at each port. I am prone to thinking (wishing) that I can do more than I am physically able, like an eight hour day, and she is prone to being a super protective mummy, worried that her ill daughter is going to push herself too hard and collapse in a ball on a nicely tiled Mediterranean ground. The bartering took some time. I like to think I was the winner here.
The biggest pre holiday issue? Chemotherapy. From the start, I was adamant that I did not want to be on my chemotherapy medication when I was holiday. It took four months to get the answer I wanted, with various options touted along the way. Three days before we departed I was told that I was allowed to have two weeks off from the Ixazomib, Dexamethasone and Revlimid. Trust me when I say, this was a holiday in itself.
Some may think that this was an unwise decision on my part, but I weighed it up. I didn’t have much else to think about, so overthinking is now pretty common. Any physical setback I experienced would be far outweighed by the mental strength I would gain from really being able to experience something new. I think I was right. My pain has increased significantly over the last three weeks, I don’t know if was because I delayed my treatment by a fortnight, a result of doing too much, something worse or any combination of the above; but I have been reminded what it feels like to live.
Ask yourself, have the expectations for one of your holidays ever been so great?
I do hate to harp on about my age yet again, but on a cruise, especially a P&O cruise in November, age is most definitely an important number. I acknowledge that cruises are not particularly cool nor are they fashionable holidays for somebody born in 1984. For somebody like me however, who misses seasons in a blink of an eye, who struggles to walk a few metres and carry her handbag, a cruise is the ideal holiday. The Ideal Holiday. I boarded at Southampton, unpacked once and I was taken to Gibraltar, Valencia, Cartegena, Tangier, Seville and Lisbon, before returning to Southampton, where Mamma Jones’ car was waiting for us. Excluding the pre holiday admistration, the doing part of the holiday was so easy. Evidentially, the ease of a cruise has a lot to do with the demographic of the ship’s holiday makers. This has nothing to do with me, but on one relaxed sea day, Mamma Jones’s foot was the victim of a mobility scooter drive by in which the perpetrator not only failed to stop at the scene of the accident, but was completely oblivious to it. The perpetrator then proceeded to bring down a clothing rail in her wake.
There was just one not so small snag… One lingering question that I could not get out of my head that constantly threatened turning our holiday into something bittersweet. Would this holiday be my last holiday? Every time I thought about it, and I would catch myself doing it multiple times a day, I had to swallow quickly and push that morbid thought as far away from my mind as possible. I could feel how much fun I was having and then see how much fun Mamma Jones was having, and I could not help but think, would the two of us ever enjoy something like this together again? Would I ever be able to go on holiday with my sister again? And each time, like just now, I had to swallow quite ferociously and not speak, because the thought of my Mum having to find a new travel buddy or my family going somewhere without me breaks my metaphorical heart just a little bit.
I might have cancer, I definitely have one with no cure and an unknown prognosis, but that is not the only issue when it comes to the prospect of my future holidays. Some life might grow on trees, but money does not and future holidays accompanied by astronomical travel insurance premiums do not come for free, even if I do feel like I deserve it.
As horrible as all of that is to consider, it spurred me on to have the best darn time possible on the ship I decided to call, the Floating Coccoon.
My body knew what it had to do and boy oh boy, my body did not fail me. Gone were the much needed lie ins and the penchant for afternoon naps. There were concessions sure, I was in bed by 10pm every night at the very latest, and by 7pm of every day I struggled to sit in a seat because I had failed to lie down enough during the day. I was back to sleeping on six pillows. I am still on 6 pillows. There was just one evening where I stayed in with exhaustion, getting into my pjs at 6pm. These are groundbreaking statistics for me.
It really is like my body knew, for on the last night of our holiday, after one almighty click in my neck, I could no longer walk with my walking stick because I did not have the upper body strength to hold. I have been suffering since. It’s a small, somewhat painful concession that was completely worth it.
I could go on and on and on, but I think you now have the idea. I enjoyed myself.
In the 12 days we were away, I witnessed 12 spectacular sunrises, 12 sunsets, one mega moon, two rainbows, violent seas, six different ports in three different countries and history. So, so much history. And colour. New colours everywhere for my eyes to feast on. My NOW TV box does not begin to compare. For 12 days, my eyes were spoilt. For 12 days, my Instagram feed contained images that were not of dogs. For 12 days, I allowed myself the occasional alcoholic beverage and I ran the germ infested gauntlet that is a hydro pool. For 12 days, I felt free from my shackles.
To my beloved Mamma Jones and Haemo Dad, thank you.