Symptoms: shortness of breath, muscle weakness and stiffness, fatigue, joint pain, loss of stamina
Pain level = 4
Treatment = none
Featured emotion: Awe
I write this from the cruise ship, Ovation of the Seas, as we steam towards Sydney on the final leg of our journey around New Zealand. This page gets its name from Tolkein’s Hobbit, and is what Bilbo Baggins titles his epic journey. I chose it because this journey has felt epic and there has been a strong Tolkein theme throughout. SM happens to be a huge fan of the author and all his works, and NZ was the location for all the major film sets.
However, there is more to this epic journey than some entertaining films. Many people close to me thought it was ill-advised, too strenuous, even dangerous to drag my sick old carcass across the world when I need such close medical attention. They worried that I could be overcome by symptoms, end up having to fly home early, or even find myself in hospital half a world away.
I took out lots of insurance, stocked up on meds, and told everyone that I felt well enough to cope. I was determined to do this, one last big blow-out of an adventure, because it is the last and I couldn’t bear to miss it. And I have always had a problem with people telling me that I can’t do things.
We were all correct. It was too hard, and I don’t regret a moment of it.
It has tested SM and me to our absolute limits, in terms of physical and emotional coping, and dropped him squarely in the role of carer for the first time. This was unexpected, unwelcome, and scary. SM took it on with unimaginable grace and humour and love, reducing me to tears of admiration and gratitude every single day. Far, far from home, I suddenly become almost completely dependent on him, and he just…steps up. Heroic doesn’t begin to cover it.
When we arrived in Sydney, I felt good, plenty of energy and mobility. We had 2 fabulous days before joining the ship, after which I began to deteriorate immediately – problems breathing, terrible joint pain, no energy at all. Three trips to the ship’s medical centre reassured me that nothing at all had gone wrong with my lungs, and I went on a much higher dose of steroids to boost me generally. This made me inflate like a balloon.
We had to accept that my new limitations would affect our plans, and cancelled the most active excursions. Disappointing, and a big, flashing red sign saying, ‘Your Life Has Changed.’ I described myself to someone for the first time as ‘somewhat disabled’ and received a pitying look. I experienced extreme kindness from strangers, who helped me navigate steps, and extreme indifference from staff who watched me struggle.
We made the best of every moment, including the two Tolkein excursions we managed to do in torrential rain. It gave SM a huge amount of enjoyment, and a big tick in his bucket list. It was worth all the hassle and discomfort to give him that, to see his face aglow with wonderment. We saw lots of Hobbit dwellings in beautiful detail, and visited the totally hand-carved Green Dragon pub. We also spent a day with a fascinating dwarf character from the films who regaled us with tales of filming in extremes of weather, and what happens when performers over-indulge in rich food before running across a plain in full armour.
With bad weather and my bad condition, we had a lot more downtime than expected. Luckily I had planned to do loads of writing for my new book, and SM loves to read. We sailed through some unfeasibly beautiful scenery, which we enjoyed from our balcony with a cup of ice cream. Reader, I do not want to give the impression that we suffered. The ship was luxurious and comfortable at all times. I am dying of a hideous disease and I AM THE LUCKIEST PERSON I KNOW. Do not cry for me. This trip was an adventure in so many more ways than we ever imagined. We met fascinating new people, saw wonderful sights, and made some good new friends. And we learned so much about each other, after 18 years, and spent more quality time together than ever before. I didn’t think it was possible, but it has brought us even closer.
But for me, this trip was about saying farewell to who I used to be. Gone are my scampering days, sooner than I believed would happen. Some doors have closed behind me, forever. It would be very easy to focus on this, rather than the things that I still can do, but that is not the way. This is about adjusting to a new way of life, bringing frustration and misery, enlightenment and new enjoyment. It is about change, and how we manage it and ourselves. I am at the bottom of a towering learning curve.
And I do not know if this hiatus in treatment has set me back or not, whether I have compromised my ability to withstand the effects of the disease by taking time out. I hope not. I do know that I’m going back into aggressive chemotherapy as soon as I return. More unwelcome and scary stuff.
But I still say: it was worth it to have this experience, to show the universe one more time that I CAN DO IT.