Half Life – 45 – a gamble
September 10th, 2021
When your oncologist calls out of the blue ten days before the scheduled appointment you know there might be a level of urgency. Dr T is great, trusted, honest, and open to the point of brutality. His love of wine, and our side-line discussions about it, might have had a small part to play in building the connection. He does, however, make taking decisions easy by providing all the information without any lily-gilding or flowery language. When asked, he gives a view on what he thinks the best decision is, while being clear it’s not his decision. He dismissed the ‘do nothing and let the cancer take its course’ suggestion as ‘a bad idea and certainly not now’, even if agreeing it should always be an option under consideration. He presented a different route I hadn’t known was, potentially, available and wanted to get the discussion started quickly.
There’s a fifty/fifty chance of being allocated to the trial group that gets the new drug. Otherwise, you are in the group getting the placebo, although you will never know until the whole trial is over. Either way the chemotherapy will be delivered into an arm every three weeks as the experiment’s main focus is to see if a combination works better that the chemo on its own. The drug trial is for an immunotherapy medicine funded by the pharmaceutical company hoping to get it licensed.
Cancer’s neat trick is to hide in plain sight inside you. If the body detected it as an enemy, it would marshal its forces and send the immune system into battle, as with any unwanted bacteria or virus. When this has happened, cancer has often found itself overwhelmed and can be largely defeated. That is where Nobby and his teammates are clever, they wear the clothes of good cells as they grow, eat, and damage all around them. The immune system passes them by, deceived by the cloak. Getting the body’s own defences to recognise these hidden deceivers and attack them would be a great way to tackle it, but the risks are large. You need to make sure whatever gets the immune system to see the cancer as an enemy continues to see good cells as friendly and leave them alone. An internal war against the cancer is a good thing, continuing that war against other parts which are wanted, and needed, would have very bad consequences.
The question is whether you are allowed onto the trial. The criteria are severe, there are plenty of reasons why not and a complex screening process to get through. All sensible, but long when treatment is needed quickly to stop the cancer having a free ride. Just as screening was starting, the inevitable complications kick in - Nobby is highly skilled in well-timed spanner throwing. Pains in the hip and shoulder led to three days in assorted hospitals, thankfully with no overnight stays, getting scanned in every way possible to see what can be done to reduce the swelling and pain. Dr T, right from the start, has worked near miracles – giving me back not just months but several years of life. His colleague, Dr M, who seemed to spend an entire day getting the diagnosis right this week, was equally focused and trust generating. The conclusion was another round of immediate radiotherapy before anything else. A good decision: last time it was transformative and improved life for months afterwards. Whatever happens with the drug trial over the coming weeks Nobby gets an initial, and much deserved, kick in the nuts. It will stop the progress a little and cause him pain and, for now, that’s enough to make me feel better in several ways.
News on whether I have passed the exam and allowed on the trial will come over a few weeks. Ironically, it is still 30 weeks of chemo so, whether it is the trial or the other more standard chemo, there are about seven months of near hell to plan for and navigate. Knowing what it will be like makes it worse. The first time walk into the unknown was helped by ignorance and a hope it would not be as bad as it can be. No shield of naivety this time. Food will taste awful, everything ends up being like endless versions of humus. Red wine becomes like chewing metal, so I’ll have to force myself to enjoy the glories of cold, rich, whites, and luscious, sweet wines. Whisky, and even Whiskey, works well too, but needs me to be more moderate and sensible.
Once the chemo plan is known and before it starts, all the wonderful reds, and a very unique port, my amazing friends have sent and given to me will be consumed with joy while I can still taste them. Stocks of richer whites and sweet wines will be increased and the search for what to write about for seven months in chemo-purgatory will start. Expect a lot about the different stages of vomiting, updates on hair loss, detailed descriptions of trees visible from windows, dog antics, children antics, and the obscure topics covered on the radio at three in the morning.
Trust and hope walk hand in hand. I have put my trust in science to give me hope. Not for me are endless broccoli and kale shakes, crystals between my toes, and learning to play kumbaya on Younger Boy’s spare guitar. For many, some who have chatted to me on oncology wards, my approach is as wrong for them as theirs is for me. It is a choice each must make. Will it work – who knows – but the only way to find out is to do it. Even if I don’t pass the trial screening I have agreed to go on the other available chemo. Whichever route will be walked, the impact on day to day life over the coming months will be the same. Hope has found its route out of the box, pain has been reduced for now, and the plan is forming. Digging deep, the inner strength needed is still there, reminding me to control the breathing, get into the right frame of mind, and focus on getting out the other side of the chemo, not just alive, but considerably better.
Sending you best quality Yorkshire wishes! 💕💕
Everything crossed for you Charlie xxxx