WITH multiple myeloma, it’s not the cancer that kills, but the infections that a compromised immune system can’t resist.
I learned this soon after I was diagnosed with this pernicious — and relatively rare — form of cancer nearly three years ago. When I asked my old friend, Dr Khurshid, what would happen if I stopped chemotherapy, he said it could get very painful and unpleasant if a nasty infection were to enter my system. He set up the cancer centre at Karachi’s Aga Khan University Hospital, and knows what he’s talking about.
The truth is that chemo is not something I would wish upon my worst enemy. The effects are hard to describe, except to say that it knocks the hell out of you, and the weakness and confusion it causes lasts at least two days. By the time I have more or less pulled myself together, it’s time for the next session. I have been through some 40-odd rounds, and am still clinging on.
There’s something called chemo brain fog that causes short-term memory loss. I know I can expect to forget things at my age, but what I experience with chemo is really bad. How bad? Let me tell you: a month or so ago, I mailed a cheque to Karachi from Dorset. When it finally got there, the recipient sent me a message saying that instead of writing the current date, I had put down my date of birth. I doubt if even the most tolerant banker would honour a 75-year-old cheque.
I am lucky in being under the care of Dr Rachel Hall, a specialist who is not only very knowledgeable, but has a sense of humour, and is prepared to discuss alternate approaches to my treatment. Dr Hall established and runs the multiple myeloma facility at the Royal Bournemouth Hospital, a remarkably efficient operation. The nursing staff are invariably kind, and highly trained.
Chemo really amounts to carpet bombing to kill the cancerous cells
But it is my wife who has been battling hardest for me. She has spent endless hours researching my condition and ordering all kinds of herbal medicines and books recommended on the internet. I keep telling her that there are all too many snake-oil peddlers trying to cash in on the desperation of cancer patients, but she is determined to find a silver bullet.
I am a rationalist, and want proof that something works in the form of clinical trials. Charlotte insists that Big Pharma torpedoes trials of alternative treatments as their success would break their monopoly. For the sake of domestic harmony, I now swallow whatever is on offer.
Charlotte’s biggest frustration is that I read very few of the blogs that are posted online by myeloma patients. But if an incurable disease is out to get me, I don’t think I want to know its family history. That’s the other thing about multiple myeloma: doctors say that while they can’t cure it, they can ‘manage’ the disease. But managing it involves weekly blood tests to ensure that I am fit enough to receive my weekly dose of poison.
And the chemicals used in chemotherapy are literally poisonous. Although much improved, the process entails injecting or infusing the stuff into the veins. This really amounts to carpet bombing to kill the cancerous cells, but in the process, the healthy ones are wiped out as well. This is what produces the weakness and other side effects.
After nearly three years of this barrage, I must confess there are times I wish it would just end quietly without fuss. But then I look outside the window and see the flowers, trees and birds in our garden, and I am happy to be still alive.
One downside to the chemo, among many others, is that I have lost a lot of weight and energy. Although I have a reasonably good appetite, I can’t stand and cook for very long.
Thanks to the Covid-19 pandemic, there are more movies to stream online than ever before. But my enthusiasm has waned, and I can’t be bothered to flick across the Netflix menu. Luckily, there is cricket to watch currently, and lots of books to read. In the hours sleep eludes me, I read a few chapters of Tolstoy’s masterpiece, War and Peace, a book I have long put off due to its immense length. But I can recommend it to readers.
Since the disease virtually destroys the immune system, it leaves the body susceptible to every passing infection. I have caught several of these in Karachi and Sri Lanka. They were often brought in by well-meaning friends who thought their colds and sniffles couldn’t possibly harm me, but they knocked me out, taking lots of antibiotics and days of misery to cure. Now, Charlotte has laid down the law, and put me in a lockdown within the wider lockdown. Nobody with any sign of an infection is allowed into the house.
She is determined to keep me alive, or kill me in the attempt…
Published in Dawn, August 8th, 2020