I had an amazing weekend, during which I waded in the Dart up to my waist. I felt the burn of cold water, but didn’t feel able to dunk my shoulders, although I came close. It’s the breathing again, I think; how deeply it affects me. I went with L and K, a friend and a friend of a friend visiting from up north, and then they took me to Kari’s son’s house where we stayed, wallowed in the wood fired hot tub, chatted about all sorts, ate a lovely Indian takeaway brought by Kari, and hung out. I found another convert to Atul Gawande in K who is a hospital consultant – it’s changed the way she works. It’s so interesting to feel the power of these ideas, and the ways in which they affect the perspectives of individuals both personally and professionally.
I’ve been receiving daily emails of the Brain Tumour Digest (the joys of becoming a brain tumour patient…) from Macmillan. This is a link to recent posts on the Brain Tumour forums, in which patients, and often, relatives, post experiences and questions. It’s not a representative group, of course, and mostly I’ve been watching the GBM4 groups. It’s not curable, it’s highly aggressive, treatment is difficult and often insufficiently evidenced: but the language very often follows a lexicon where the metaphors involve fighting; not giving up; finding and paying for chemotherapy drugs that aren’t funded; a battle to halt the inevitable decline and death. The stories are often horrible and the posters are deeply upset. I haven’t posted anything, I can’t. How do you deal with so much terror, so much grief, and so much desperation? The fight for what, a miracle cure when the tumour isn’t curable? We need a new narrative, one of accepting and finding out what matters most to the individual – that fundamental question that Atul Gawande asks.
Another regular question involves the ketogenic diet, (note that this is an explanatory link, it’s not necessarily an authoritative) where there is some interesting research regarding the ways in which certain tumours metabolise and the fuel they use. This is behind the prevalent cancer loves sugar meme. However, there’s very little evidence, and there are several clinical trials ongoing in order to see where and how the diet might help. If the diet is helpful, it will depend very much on the individual, the precise type of tumour and a whole host of other variables. It also involves a very restrictive diet and in the case of GBM a small gain in length of life; as someone who loves food, and who is mostly veggie (with the odd fish) I don’t consider this diet worth it. Food is more important to me than gaining a couple of months, if that works in my case and that’s a gamble. There’s a link here debunking some of the myths, again I can’t vouch for its robustness but it will give you some idea of the debates and an alternative view.
This is the case for the majority of treatments, which are now tailored to genes and types of cancers, and is the reason why there’s no point in fighting to receive an expensive drug that won’t work in your specific situation. Sadly there are too many charlatans out there who cite ‘evidence’ that really doesn’t exist, and who make claims for ‘cures’ of cancers which are simply not curable. You might reach a stage of no evidence of disease (NED), but the cancer is still there. Milking desperate people of course is also a market (including Big Pharma and the massive expense of such drugs for what’s often a tiny delay in death at the very end of a life when you are dying and unwell). It’s all too easy to go with the charlatans who suggest you put coffee up your rectum, or to look to the US where medical centers operate and treat people at vast expense, all too often with little in the way of published results and thus evidence for their claims either. It’s based on your ability to pay, and their ability to sell to you. Being Mortal highlights this issue.
So, what is most important to you? If you’re currently well it’s a question worth asking yourself, discussing with your family and friends. If you’re unwell, it’s an essential question. Do you want a prolonged and frantic death, where you take drugs that have horrible side-effects till you die, holding out for as long as possible? Or is it trying what you can that has a decent chance of working for you to give you some quality of life till you know it’s the end of the line? Once you accept death is coming, make it comfortable, manage the process? Let go.
Onset Verification and Dummy Run
Today is the day of the dummy run, when I’ll see how my mind has decided to behave with the actual radiotherapy machine. I’m to be screwed down in the mask while the radiology staff take and set final measurements based on my scans from the other week. I begin the day by sewing through my left index finger with a jeans needle while attempting to install a big zip in some soft furnishings for my brother’s van. The loss of manual dexterity didn’t help. Luckily the needle broke and the zipper foot bent so there’s no actual stitching, and it missed the bone. I let it bleed, then did some first aid with micropore to stop the bleeding. Hopefully, I won’t get an infection.
We pass the junior doctors’ picket line outside the hospital, and I wave and give them the thumbs up. They cheer.
I have a review with a radiographer first, in which we discuss the chemotherapy and radiotherapy, go over the side effects again, and confirm consent for both. I’m given a long list of dates and times for my treatments, including 2.30 tomorrow when I’ll be given my week’s supply of Temozolomide and other medications, before having the first radiotherapy treatment.
In the radiographer’s file are some colour prints of my brain which show the area to be irradiated in yellowy-greens and blues. These are as always a mirror image, and show transverse slices through the brain from, I think, top to bottom. I’m astonished at the size of it, which in the centre slice crosses the centre line of my brain. I think perhaps it relates to the area of oedema from the original MRI scan. The radiographer says it’s based on various things, including the recent CT in which they imaged the blood supply. I can’t really get the answer I want, which has to do with something I read about oedema as a sign that the blood brain barrier has been compromised. I wonder about the vascularisation of that area, and whether the tumour cells are calling up the reserves. I think about my increasingly focal left-sided headache, and the onset of periods of nausea over the past three days. I am now on 2mg of Dexamethasone only though, and both might be related to that. The radiographer says to keep taking that, and that it’s likely the dose will increase with the radiotherapy.
I’ve also been conversing with a friend of a friend who is a few days ahead of me with treatment for the same type of tumour. He struggled with his mask, and the staff where he’s being treated have cut eye holes in the mask which has helped him no end. I’m glad to have that information. He feels okay after two days’ worth which is also good to know.
Walking through to machine, there are several smiling and friendly staff who set me up on the slab with the various pieces of kit in place. I shuffle up and down and am tweaked into position from all directions. At this point one of them lowers the mask over my face and clicks it into place. Above me there’s a circular machine (the one that produces the rays), and behind it a very clean and bright white tiled ceiling, and some illuminated photos of autumn leaves against a bright blue sky. I love the colours; oranges and blues jumping out. I can’t focus enough through the plastic blur and my slightly dicky vision to see what type of trees they are. Maybe sycamore? There’s some more fiddling, marking, a green crosshair above me on the machine. It’s to the left, while I want it to be in the centre. Of course that’d be no good since it would miss Hunt altogether. There’s some more space around my cheeks, as the dex swelling has reduced massively over the past few days. I feel comfortable, and relaxed. I start to worry my head might move, but it’s well and truly trapped over the forehead.
The staff all leave, telling me to raise my hand if I need them. I get Blondie’s Maria quite loud which I rather like. The machine resembles a flying saucer but is on an arm. The slab with me on it rises up to meet the machine as it moves into position above my head, with a background whirring sound like the hum of a distant dishwasher. It reminds me of the Southpark episode with the anal probe. I must find out what it’s called, this machine. A rectangular piece approaches the side of my head from the left. I see the sky above. I’m totally relaxed, there’s no enclosure and no darkness, and I have a little more space over my face. I feel the pulsing of my heart in my face but it doesn’t reach my head as it did before. I’m going to be fine.
The whole session takes around 25 minutes, and the staff tell me the actual treatment doesn’t take long – just a few minutes, plus the setting up. I can manage. We also discuss hair loss. I should have a band across the right parietal area, and a reciprocal band on the other side where the radiation exits. The chemotherapy shouldn’t affect my hair. I can have an appointment to be fitted for a wig, but I decline at this stage, mainly because as a hot person I find the thought of a wig unbearable. I can of course change my mind.
Next is a blood test; I’m fine with that too, despite the veins having vanished in my right arm which meant a second go. It helped to have a chatty and funny phlebotomist. I told her about my diagnosis and we discussed doing fun things while you have the chance.
I feel such relief. Tomorrow is the day the treatment starts.