There was a time when I was healthy. I could eat, drink, dance, run, work 24/7 and still be full of energy and of course, pure mischief. Now, when I sit in a train, tube, bus or someone’s car, I look at healthy people and wonder why I can’t be like them? A lad carrying two tennis racquets buzzing to go thrash his opponent, women cycling in central London, fat babies wriggling, people getting out and about and walking with that strut of good health that I have not known for a few months now. I say a few months, but there have been days when I have been able to sit through an entire meal and eat it, walk without pain, and sleep almost the whole night through. Now, unfortunately, night time is just one long walk of pain but sadly, the end of gallows plank seems still too far away.
Last night, in my similar situation, I wrote a short affirmation to myself, to the people who love me and the people whom I love dearly. I affirmed that I would fight harder, that I would rise above this constant pain and nausea. The vomiting happens often enough and is almost always triggered off by anxiety or not being able to eat. It happens after a fit of coughing and can be quite unexpected. Nothing too ghastly and I am amazed at how many of my friends can cope with me doing it in front of them. It brings some stomach pain relief although I must admit that the tummy issue is doing so much better, particularly when I can remember to take my movicol in the morning. Such disgusting stuff to drink at 8am that it is no wonder I often forget.
Right now it is 01h45, I have just vomited but drank some more milk, took some more painkillers and am waiting for them to kick in for the next 4 hours if I am lucky. I was often accused of snoring...this is more of a luxury now. I would love to keep you all awake at night snoring loudly. It would mean that I am “healthy” again. I am beginning to make the error of associating health with normality. By this, I tend to see myself as abnormal now as compared to healthy people. I can’t, however, wonder which hidden illnesses people might have while they go along their daily lives and then one day like me, wham...guess what: you have xyz, and that’s not all...
I started this blog at least 3 nights ago, the 16th. It is 01h00 of the 19th and I have just had my complimentary 30 minutes’ sleep. I no longer lie there trying to fight the lack of sleep; I now just turn on the light and do something. Last night I wrote a whole lot of names on postits with the idea of continuing my labelling of my “estate”. Sounds quite silly but over the years, I have accumulated so many beautiful objets d’art and been given so many amazing gifts, I kind of want them to go to the right people. Fortunately, my family is a trusting one and are not in the least concerned about a “bamba zonke” affair when I die, that is, a “grab-all” with one member of the family hanging onto one end of a cooking spoon and another saying “I’m sure he would have wanted me to have this”. To some extent, I am going to have to leave it to the family to just decide but the major stuff has all being sorted out. The two major items I treasure are my ‘cello (Alexandre) and my piano. I have another piano in Zimbabwe which was coming to me directly from my mom but I guess she and I will have to think that one through again. My other old ‘cello which my late grandfather repaired is somewhere in South Africa and I intend leaving it with the person who has it as I had always said this would be the case. So, last night I wrote names down on postits, they all looked crowded and today, only managed to stick one label on! I deliberately tried to stay awake all day and managed, thinking I would sleep all night tonight but no such luck.
I had hoped to get the radiotherapy over and done with tomorrow but after a frustrating day of waiting, found out around 5pm that it was scheduled for Monday. I am under no illusions as to the side effects, nausea, possible more vomiting and losing my hair but I don’t care as long as I get some pain relief. The disease has spread into my bones, L3, and I think, the sacrum. Not being a medical doctor I can only relate what I think I am told. My main wish is to recover enough to make a final trip to South Africa and Zimbabwe. Thereafter, sorry folks, I want a rapid departure. I don’t want this to drag on any longer than necessary as I have very little quality of life right now. I exist, I am not living.
Many people have kindly offered to visit me and please don’t take my request for you to wait a bit, personally. I have absolutely no voice, am prone to constant coughing every time I try to speak and vomit at a moment’s notice. Not exactly how I want to be seen. I am, however, going to make more of an effort to allow family to visit as I have been protecting them too much from what is actually happening, updating them by carefully-worded texts.
All things considered, I had a fairly pleasant day. It was sad saying goodbye to Bjorn Boes a Dutch friend who was once a couchsurfer (look him up on youtube, he is quite famous). He was great at doing my shopping and helping me with daily stuff but also at staying out of my way most of the time. Once again, I realise that I need to let my family into this more...they don’t mind making the journey to come and see me and would love to help. Generally, I try to remain independent. My main concern is eating. I have to force myself to eat anything. It took me a whole hour to eat one slice of toast cut into four pieces. Sometimes I cut it into even smaller pieces. I now weigh 63kgs, my comfortable weight was always 64 but during chemo, with the steroids, I gained up to 71kgs. I am back on steroids but still no appetite, mainly lunch and evenings. Part of this is lack of exercise...a vicious circle. I cannot exercise due to back pain and breathlessness so I sit around or walk around the house to get my metabolism going but more often than not, end up coughing or doubled over the toilet bowl. I have to say, if you’ve never looked under the rim of your toilet bowl, put some gloves on, get an old toothbrush and mask and get scrubbing. You will be horrified at what is actually there. Don’t waste money on those cleverly advertised products, do it the “how clean is your house” way but have a brave stomach to hang onto.
After radiotherapy I am hoping to be moved into the local hospice for symptom control as I am sure I will need some TLC from some professionals. Thereafter, let’s hope I can reduce my pain load to enable me to make that African trip.
This is not quite the end although you might get that idea from reading this blog. I have my affirmation but also please understand that I want peace now, I want rest, I want a life that is worth living. I feel bad saying that when I know that there are people with worse illnesses than I have, who cope day by day with handicaps and other awful challenges. I have had a good life, at least I have chosen to turn the bad parts into good and celebrate the good parts even more. I am ready, and I would really like you all to start preparing yourselves too in whatever way you do best. I have a beautiful friend who says she buries her head in the sand like an ostrich when it comes to my mortality and I chuckle to myself and think, yeah well, just as well your bottom is as beautiful as your head because either way, I’m still going to have a great image of you to take away with me. I can see her blush at her desk as she reads this.
Thank you once again for reading!
Your skinny but juicy goose.