I remember keenly the strong feelings of apprehension balanced by a deep confidence that I would be okay, and was strong enough to face whatever was coming my way. Spring had officially sprung and sunny, light-filled days were beginning to prevail. A couple of days previously, on March 21st, my (then) boyfriend and I had managed to get away for a day to celebrate his birthday. We went to Hull Aquarium! As he's from near there, and afterwards went to see his Mum. It was a really joyful, sunshiney day, made even more special by the knowledge that it could be my last day "on the outside" before being confined to a hospital room, experiencing intense physical and mental trials.
I remember the strategy I used then, to steel my nerves and enable me to stay on board with the plan:
- Don't think about the length of time;
- Focus on immediate tasks and goals;
- Determine to achieve small victories, each moment, each day;
- Stay focused on the long-term outcome - for me, then, being cancer-free and able to live a full life.
If I stopped to dwell on the reality facing me and the guaranteed suffering, boredom, and potential loss of my life ahead then panic would engulf me; I would become completely paralysed and unable to breathe.
I remember friends, family and other patients reacting most strongly to the isolation aspect of the Stem Cell Transplant. I would often be asked "how will you cope with the boredom?" and I always answered in the same way: "I'm not worried about that, I imagine I will be too poorly for boredom!" The unspoken part of my response was that I was that I was concerned more about coming out of it alive than of how to pass the time, alone and confined to a small, nondescript room. I should clarify here, that I wasn't in complete isolation - I was allowed visitors and of course doctors and nurses and cleaning staff etc were allowed to come in, as long as they had washed their hands thoroughly, donned mask, apron and gloves in the antechamber and were feeling well. I didn't get lonely, even when I was alone. I actually often found that I couldn't handle being around anyone. Listening to music got me through (I even took my radio in so I could listen to 6 music and Women's Hour in the mornings), reading books, and being creative - drawing, crochet projects, playing guitar and singing (before I got too weak), and of course my buddhist practice which I maintained as consistently as possible.
It's not a time I like to look back on as it's still very painful to relive. I am so incredibly grateful to have come through it and to have completed the treatment when others I knew didn't make it that far, and to be approaching eight years in remission is a dream come true. What I'm saying is, horrible as that experience was, it was worth it.
As you can imagine, the past few days have been triggering unpleasant memories and the "fight or flight" feelings have been coming up again. Having choice taken away is unpleasant at the best of times, but facing an indefinite period of isolation is fucking horrible - for anyone. You would think I'd be feeling cool, calm and collected having faced what I did back then. But no, the familiar panic and strong urge to run away (to where I don't know?!) are rising up in my belly every day. So, in order to gain a sense of control and to try and make some sense of the situation I decided to write this. Partly to convey a message of hope - this is doable and most of us have a whole flat or house (and hopefully some outdoor space) to roam around in; we have familiar creature comforts around us (lucky ones have real life furry creature friends to boot). And, the whole point of this trial facing us is to preserve life - the one objective that makes this worth getting through. Staying focused on this most important outcome keeps me sane. I don't want to waste all of the treatment I had back then getting sick and dying now. I want to stick around on this planet to see what I am able individually / what we are able collectively to achieve through and beyond this.
EXCITING!
I remember friends, family and other patients reacting most strongly to the isolation aspect of the Stem Cell Transplant. I would often be asked "how will you cope with the boredom?" and I always answered in the same way: "I'm not worried about that, I imagine I will be too poorly for boredom!" The unspoken part of my response was that I was that I was concerned more about coming out of it alive than of how to pass the time, alone and confined to a small, nondescript room. I should clarify here, that I wasn't in complete isolation - I was allowed visitors and of course doctors and nurses and cleaning staff etc were allowed to come in, as long as they had washed their hands thoroughly, donned mask, apron and gloves in the antechamber and were feeling well. I didn't get lonely, even when I was alone. I actually often found that I couldn't handle being around anyone. Listening to music got me through (I even took my radio in so I could listen to 6 music and Women's Hour in the mornings), reading books, and being creative - drawing, crochet projects, playing guitar and singing (before I got too weak), and of course my buddhist practice which I maintained as consistently as possible.
It's not a time I like to look back on as it's still very painful to relive. I am so incredibly grateful to have come through it and to have completed the treatment when others I knew didn't make it that far, and to be approaching eight years in remission is a dream come true. What I'm saying is, horrible as that experience was, it was worth it.
As you can imagine, the past few days have been triggering unpleasant memories and the "fight or flight" feelings have been coming up again. Having choice taken away is unpleasant at the best of times, but facing an indefinite period of isolation is fucking horrible - for anyone. You would think I'd be feeling cool, calm and collected having faced what I did back then. But no, the familiar panic and strong urge to run away (to where I don't know?!) are rising up in my belly every day. So, in order to gain a sense of control and to try and make some sense of the situation I decided to write this. Partly to convey a message of hope - this is doable and most of us have a whole flat or house (and hopefully some outdoor space) to roam around in; we have familiar creature comforts around us (lucky ones have real life furry creature friends to boot). And, the whole point of this trial facing us is to preserve life - the one objective that makes this worth getting through. Staying focused on this most important outcome keeps me sane. I don't want to waste all of the treatment I had back then getting sick and dying now. I want to stick around on this planet to see what I am able individually / what we are able collectively to achieve through and beyond this.
EXCITING!
