I’m aware the title of this blog post sounds like a future Adele album; but heck I’ve made it to 55. Today is my birthday. What’s more, I know for sure today is my birthday, because Jenny has confirmed it. I thought yesterday was Monday, which might have been my birthday, but I had wondered whether that was 12th, which it was, only it was Sunday. Since I’ve not blogged you up to date you’ll doubtless be as confused as I am about this ramble.
The effects of brain radiotherapy, most dramatically a deep sleepiness, have hit. So I spend most of my time asleep, about to drop off, or wondering where I am. My belongings, socks, glasses of water, food, are spread around the house, put down in odd places. It’s like coming off nights and going food shopping, which only a shift worker will understand. I once lost my purse during one such expedition, searched all over at work and home and called places I might have left it, before giving up and cancelling my bank cards. Before happening across the purse a week later in my fridge.
I can’t describe how my mind feels, but the photo of gorse represents it precisely.
I’m not sure if this is somnolence syndrome, but I’m certainly sleeping overnight and then for at least 6 hours in the day.
It might have been ironic to wake up dead, but today I awoke and fair leapt from my bed. Not through a surge of energy following a good night’s sleep and the thought of a birthday lunch later, but through diarrhoea which I’ve had for 3 weeks thanks to the chemo. I had a celebratory early breakfast of two loperamide, buscopan, and the king of bottom blockers, ondansetron, in preference to my current mainstay cyclizine which is a bit of dozy medication. I’m going to try splitting my steroid dose and taking half at 12 today in the hope I’ll wake up for lunch with the extra revs and make it through without collapsing face first onto the plate.
I feel pretty strange about my birthday. I’v never been a great one for traditional birthdays. My 50th came in the weeks after breast cancer when I was trying to get fit to return to work after mastectomy, so I pretty much ignored it.
Do I want to celebrate? Watching the obsequious pomp and sqaundered austerity money going on the Queen’s birthday makes me as sick as a dose of Temozolomide. I’m no royalist, though I don’t think Gloriana is a bad person, I just find the fawning and borderline jingoism hard to stomach. Yes give the old bird a party, with people she knows and wants to be there. Then forget the nonsense about her constitutional role and let her retire with her horses and her gin to live off her vast wealth without any top ups from us.
I think I can empathise with how 90 year old Queenie feels; knackered and wanting to be left alone.
Clearly I can’t yam a cheeky glass of Prosecco, three ginger tea is more my bag nowadays. But if I’ve blocked sufficiently and the preprandial dexamethasone works its magic I should be able to remain alert enough to eat a pub lunch and maybe even hang onto it till the evening.That’s the plan.
I feel abandoned this week, having been into Derriford every weekday for six weeks, suddenly I’m adrift till 6 July when I see Dr Sarah for my review. I’ve been unable to get hold of the specialist nurse, and have done my own research and tweaked the meds accordingly, knowing I can always call the ward if I need to. I spoke to my GP too, who’s researching some other meds for the colitis which has well and truly kicked off after the chemo. It’s such a difficult thing to manage because each medication has effects, the treatment has effects, and they all pile up and interact like a fracking exploration, leaching into the groundwater, undermining geological faults and kicking off earth tremors.
Sometimes in the morning I forget what I’ve taken half way through.
So happy birthday to me, hurray. Another arbitrary milestone on my journey towards death.
I hope to post the second catch up blog this week, although I’m struggling to structure it. So, I’m through the first big treatment block, I’ve made it to 55, and I’m thinking about what to do next. All will become clear once my brain’s recovered a little more.
It’s been easy to float along with the treatment, knowing the potential for it to affect me in nasty ways, and to feel relieved that actually it’s not that bad. The effects accrue, though as ever it’s hard to know what is affecting what. Brain? Radiotherapy? Chemotherapy? Steroids? Anti-emetics (currently these are drowse-inducing). I live in a space where I don’t seem to have access to my thoughts, including the ones I’ve just had. So I forget the thread, lose the point. This happens when I’m talking, thinking, or doing. The best description I can give is that it’s like being in the flow state, what used to be called right-brain. It’s a place where time doesn’t really exist, and where any linear thought is subsumed beneath sets of connections that spark and form into a creative whole; essentially the antithesis of a primary class preparing for a SATs test in writing. But here’s the rub. I can’t achieve my usual flow state when I write. Usually my meanderings begin, spawn creatures and watercourses that gather into pools filled with life, thought fish and larvae and plants. I do suspect sabotage, and of course it has to be Cheshire Cat Hunt; Tory Secretaries of State like to work together to impose their clueless dogma on any of us in danger of forming and expressing an original thought, or comunincating in anything other than doublespeak. So I’ve been trapped In a medieval chastity belt that’s stopped me from blogging. I’m afraid I might have left at least 80% of the blogging market untapped. So competitive tenders please, from Serco, G4S, NSL and Virgin Care. I’m sure they’ll be far more efficient than I.
My sleep is now more unconsciousness, though I do wake in the night sometimes. I haven’t felt good, but I have been able at least at the weekends to do something, to make a short-term plan and have some hope of it happening. I have periods where I feel deeply tired, drugged, blunted and out of phase with my internal and external reality (whatever that is) in the way I might if I yammed 60mg of codeine and drank a pint of cider. I can’t necessarily sleep when this happens though; I just sort of stop, and hang, like a dope head at a party.
I made the Sharrah Stagger three weeks ago; a total of five miles’ walking up the Dart and back, culminating in a swim in the beautiful pool. The event was organised by a visiting friend who finds it very difficult to walk any distance, and it was one of her long-term goals to swim there; two other friends also have mobility and other health problems, so we decided to stagger together. It was a Sunday and I’d had two days with no radiotherapy, though I’d taken the Temozolomide as usual. I’m pretty sure I wouldn’t have made it on any other day.
We were accompanied by a few other friends on the opposite end of the fitness scale, who were delighted to join us. I had no real concern about safety because all of us are outdoors people and wild swimmers who take the perceived risk as a part of the point of doing it; we like a thrill, and we like to live on the edge. Nonetheless I found myself feeling grateful that if anything were to go wrong we had someone able to scamper up the steep sides of the Dart Gorge to get help.
Of course, things didn’t quite go to plan. We made it to Sharrah slowly but uneventfully, with a picnic lunch of carrot hummus, guacamole, pitta bread and gin lemon drizzle cake at Black Rock on the way. I found myself creeping in from our little beach – where, scandalously – someone had left two grilles from so-called ‘disposable’ barbecues. I found myself eventually sitting on a rock with water up to my shoulders. The water was still pretty cold, maybe 10 or 11 degrees, and I was afraid of being unable to breathe properly. It’s that core confidence that’s missing, that certainty that my body can respond, that I can swim like a fish and get myself out of trouble as I have so many times before. I have little faith in my body doing anything beyond failing. The fit and athletic, strong me hasn’t been there for at least 18 months, and since last autumn I’ve lost it completely. I remember meeting Kernow S at Polzeath just before I was diagnosed. I went out about 300 meters in a wavy but not strong sea, and had a real surge of fear as I started to swim back in that I couldn’t make it on the ebb. I did, by taking it slowly and steadily. This time, I felt similarly. But shielded by J I made it up to the cascade and sat on a rock just as I felt I needed to.
There was a teenage couple there and the boy took some time to get in wearing his boxers, loudly encouraged by the girl, who was happily swimming in a bikini. We joined in the encouragement and he finally took the plunge. I felt a surge of energy, watching two young people really going for it and having so much fun. So I decided to come down the cascade. Of course I hit a couple of dark rocks (which have a special significance in our swimming group) and naughtily grazed one knee and one calf. I almost did the half dive to go under, but for once chose the sensible option and kept my head above water. In bubbles you sink because they make the water less dense. At the same time, the current pulls you along and so the feeling is like being blown by a gale through a puffy cloud. At Sharrah there’s a sheer rock face and the current pushes you into it, so I bent and kicked as I neared it, managing to partly cross the current and head downstream. I felt warm, buffeted and exhilarated as I got out.
Could I have the germolene? said a voice to my right. I looked over and realised that J had fallen over, and that C was holding a tissue over J’s right shin. Now being a paramedic I’m more inclined to the germolene approach than the dial 999 one, however, as C lifted the tissues from J’s shin I found myself coming as close to physically leaping into action as I have in months. J had fallen into a rock, and lacerated her shin over the bone (known in the trade as a pre-tibial laceration). Beneath the laceration was clearly a varicose vein. Dark blood welled and poured. I grabbed a wade of tissues, got the others to raise J’s leg and to press hard on the wound with the tissues. People worry about arterial bleeds, but if you burst a varicose vein you can bleed out. I wasn’t in a position to take J’s blood pressure (if it’s high, the bleed can be spectacular). On one occasion I was called to a woman who’d burst a varicose vein and who had dangerously high BP; we were forced to pin a note to the kitchen door for the patient’s son who was expected imminently, but whose phone was switched off: Please don’t worry, we’re an ambulance crew and we have taken your Mum to hospital. She’s burst a varicose vein, we’ve stopped the bleeding, and she is ok we promise. I doubt he believed us as he opened the door to a kitchen that looked like the set for a slasher film with blood up the walls, and several football-sized clots wobbling on a blood-smeared floor.
Now as I was travelling light, I’d made a decision not to carry my first aid kit, and so I had no dressings with me. So I got the others to help J to dry off and get dressed, because of course by then she was both emotionally shocked and cold from her swim while I fished in my rucksack for the tissues I’d packed. I had a look at the wound and allowed it to bleed a little to clean it as best I could, then used my wodge of tissues taped down with micropore to maintain the pressure. Fortuitously, J was wearing knee-length pressure socks which meant we had a simple and effective way of maintaining the pressure evenly over the wound. After a rest and some more picnic, J was sure that she’d make the walk back. I sent her off to Tavistock Minor Injuries Unit to get the wound properly assessed, cleaned and dressed. Rather more exciting than we’d planned, but a lovely boost in several ways. Bun was also delighted to spend the afternoon in the woods and river, back to her old life.
So to what’s now been named the yeuch. Not a feeling of being really unwell, but rather an intermittent feeling of maybe feeling a bit not right, that gently builds to something more; a lethargy and nausea. Sometimes verging on the almost-but-not-quite sick before subsiding like boiling milk as you whip it off the gas ring. My head aches on the right and down the right side of my neck again in that carapace point. I have a burning ear, and nerve pain along my right cheekbone; that was one of the things I’d noticed as Hunt grew in my head, it’s a branch of the trigeminal nerve, and I guess the pain has to do with pressure on it.
The yeuch has assumed a pattern now; I wake feeling more or less okay, then the headache builds with the nausea. I take my meds and have toast early, and that calms it down. Then after I have muesli later, it begins to build a bit, before easing. I take the Temozolomide and feel ok. By lunchtime, I’ll be ready for a meal, and I eat quite happily. Then at about 3.30 – 4, the yeuch returns with a vengeance. I feel I need some food with it, and nibbling an oatcake will help a bit for about ten minutes, but then it gets worse. Sipping water doesn’t help much either. I sip Pukka Three Ginger Tea, and that’s helpful as long as I let it cool down first – hot is bad. I can’t eat till about 8pm, at which point the yeuch dissipates.
I saw Dr Sarah, my oncologist yesterday. My blood counts are good, and she’s arranged for the nebulised antibiotic for me probably in the next couple of weeks, because of my allergy to one of the constituents of Septrin which I should be taking. We discussed the timing of the meds, which is fine. So Sarah is prescribing a different anti-emetic for me to take at night. It’s one of the antipsychotic drugs that, taken in small doses, have an effect on a range of the various vomiting receptors in the body and so also work as anti-emetics. They tend to cause drowsiness also, but at night that won’t matter. So I get that today, and will try it tonight.I’m hugely releived she didn’t suggest upping the steroids, although she has said there’s no chance of reducing them again for the duration which I knew.
I’ve been in touch with a man who’s literally 3 days ahead of me on his treatment for a GBM4, and who is the friend of a friend. I shall call him A; he’s happy for me to discuss what happened to him here in the hope that others can benefit from his experiences. We’ve been comparing notes by email, and were both doing pretty well initially. It was especially helpful to chat to him over the mask stage since both of us had similar fears, and managed to get through; he was able to have eye holes cut from his mask which made all the difference for him. Thinking back, the claustrophobia for me was largely a manifestation of all those deeper fears, the thought of having that radiation boring into my brain. The worry that it might miss the target. The tumour, the chemicals, the feeling of swallowing poison when I try so hard to avoid it the rest of the time, alcohol and clotted cream excepted.
Both A and I were struck with the effects of the radiotherapy at the same stage of treatment last week.
The difference was that I took matters into my own hands and upped my dexamethasone dose over last weekend. The effects are as I understand, caused by swelling in the brain from the radiotherapy. The problem is, that there’s that fear there, a deep fear, that something’s growing back. The not knowing what’s in your brain. The knowledge that the alien exists in some form, whether that’s the remains of the original tumour, or the cancer cells blossoming around it. The wondering whether the radiotherapy is killing them, or has it missed some? Are they growing anyway? Then there’s the chemotherapy; the metallic poison that I can taste and feel like a hand around my throat, like a victim in an Agatha Christie novel.
I’m a paramedic, I have enough knowledge to be able to consider the signs and symptoms and to work out what’s most likely to be going on. I have a professional understanding of pharmacology and pharmacokinetics, which is sufficient to be able to research drugs and understand how they work and what effects and side effects they might have. That certainly doesn’t make me an expert, but it gives me insight and some control.
There’s a big but though; I’m also a patient. I’ve already had a significant scare when my vision went blurred in the early days before surgery. It took me an hour to be clear-headed enough to work through some of the reasoning for differential diagnoses, and then a couple more days and a chat with the GP to get everything clear and to be happy. That was fear (exacerbated by being unable to see enough to read up on the problem). And of course I’m being subjective always, and with an emotional response.
Back to A; his neurological signs and symptoms from pre-surgery returned with a vengeance. He twice lost his speech for a period. He lost strength and sensation the limbs on one side. He was terrified. He took to resting as the only way to calm things. He told me how afraid he was, how afraid that this is how it will feel to move towards death. That’s my fear too, but I haven’t had the severity of A’s signs and symptoms. The knowledge that it’s your brain and your mind being destroyed by this cancer is a horrible one.
I asked A about his steroid dose and explained I’d upped mine. He didn’t respond to that part of my email, but talked more about feeling a bit better with more rest. I tried to reassure him that there are experts there who are able to manage the worst of our nightmares. I didn’t pursue the steroid question as I felt I was interfering, and I was sure it would have been addressed. Then yesterday, A more or less collapsed in the hospital and saw a consultant who immediately upped his steroid dose, which was low. So somehow, A, who has no medical knowledge, had been suffering all these dreadful signs and symptoms caused by swelling in his brain from radiotherapy treatment, yet nothing had been done for him. I don’t know the precise circumstances. I do know that even if you’re literate and have all the leaflets and booklets, and you have the phone numbers to call, you don’t necessarily think or act in the way that those who’ve provided that information think you will. That’s because you, and those who are close to you, are terrified.
A was having treatment five days a week, and yet nobody chased up the problems he was having, most of which would have been obvious to anyone who’d seen him on a regular basis for a couple of weeks. He didn’t know that the steroid dose could be raised. He didn’t understand what was happening to him. At Derriford, I hope that would never happen. My radiographers ask each time I see them how I am, and what problems I have. They refer to my oncologist. That’s how it should be. Some patients might of course not say what’s going on, through fear, or other problems, or not wanting to bother people (I once attended an elderly woman with a fractured neck of femur and fractured wrist who’d laid on the floor since 1am, before pressing her alarm at 8am, because she didn’t want to disturb either her neighbour who was her key holder, or the paramedics).
But you get to know your radiographers and I’ve come to look forward to our daily chats, and bits of banter. They are happy to show me things too when I ask, to explain the machines and the lining up. I watch them with other patients; one in particular clearly has significant neurological deficits and gets lost in the corridor. I see them come to find him, take his arm and chat. They’d notice if something unusual were going on.
I’m hoping to go on a longish walk and swim on Sunday, very slowly. I don’t know if it’ll be possible – everything hinges on the new anti-emetic. I’m two weeks in, a significant chunk. So an amble up the Dart would give me a huge extra boost. Here’s hoping.
Yesterday marked a whole week of radiotherapy/chemotherapy. With the build-up, the dread and the various tales of what might or might not happen, I’d expected something worse. I have a long way to go, yes, but while it’s not pleasant, overall I feel – here it comes – positive about it. Dad and I have got into a kind of routine where he drops Bun and I off on the moors, goes to do the shopping, gets his papers and returns to collect us. We then do our Derriford stint.
The timing of everything seems inordinately complicated, to the point where I’m considering volunteering the problem as a SATs question for 6 year olds. But how much is due to my still slightly less than agile brain? I have to take my usual meds, which include the steroid, early. For these I need some food so I have toast and tea. I have to take the Temozolomide one hour before the radiotherapy starts because its role is to render the cancer cells more vulnerable to the radiation. The radiotherapy time varies between late morning and mid afternoon, and is planned to the minute. So I take the T on the five minutes before the hour, because by the time I’ve opened the four little sachets a couple of minutes have passed.
Now, I must also take the T on an empty stomach, which means at least two hours before the last food (which includes drinks with milk and so on, though water is fine I think). So when Dad offers me shortbread, I’m not supposed to eat it… ooops. I must also not eat or drink tea for one hour after I’ve taken the T. Oh, and then there’s the ondansetron. The T makes me feel quite nauseous in a stomach-churning way. So I take ondansetron thirty minutes before the T.
Yesterday, Dad and I had a plan involving going into oncology early so I could have my weekly bloods taken (reading up on this, there’s a point called the nadir when blood counts, and thus resistance to infection are lowest, and this is from 7 – 10 days). So I’ll take the T en route, grab my ticket, get the bloods done, and we’ll dash off to B&Q to pick up a few bits including the paint for my front door which my brother Dave is going to paint for me. Then we’ll return for rads at 1.38.
I open my sachets as we pass Runway Road, and promptly drop a capsule which slips between the sachet and my mouth as I hold my water bottle up to wash it down.
Stop! I’ve dropped one! Dad obeys, and the water slaps from the water bottle over my face and down my front. We stop in the bus stop but I can’t find the capsule. It’s not on the floor, it’s not in my scarf, or hiding in the folds of my coat, or by the side of the seat, or under the mat.
In your bag? Says Dad? I must admit that very many lost items show up in my bag, including swimsuits and elderly bananas. So I empty it – and yes, there it is, a glimpse of lemon yellow, nestling right at the bottom in the seam. I yam it fast with the remaining dribble of water.
We arrive at 12.25. I grab my ticket, number 22 for bloods, and 21 is on the display so things are looking up. Fifteen minutes passes. No change. Do I ask? I know they have other things to do, and maybe there’s a problem. So I wait. It’s now 1250, and they close for an hour from 1-2. The phlebotomist appears and places the bag over the ticket machine – so I tell her I’ve been waiting – oh I didn’t know you were here I was looking for 21 and they’d gone! I’ve been restocking, you could have come in straight away! Drat. My veins are still missing on the right.
So, bloods done, Dad and I race to B&Q at 1. I choose the paint colour (I was torn between a lovely bright turquoise, a burnt orange and pink, but plumped for the pink – I have standards to maintain). I leave my request at the paint mixing counter and we dash off for the rads…except there’s a complete jam outside and we can’t get out of the car-park.
Finally we creep onto the road with minutes to spare, and I make it through the doors at 1.36. The minute I check in with my barcode I get called and wander down to the waiting area, stopping for a wee on the way – I don’t want to be uncomfortable. I’m getting to know some of the faces in the oncology waiting area, and wonder at the constitution of the waste products being flushed down these toilets. Not much can be alive in the sewers beneath Derriford; the recent research that mentions the amounts of medication finding its way into the water supply via excretion have nothing on this cocktail. These must be among the most toxic toilets in christendom.
Having wondered about the type of tree in the ceiling light panel of the radiotherapy room, I have noticed that each radiotherapy treatment area is named for a tree. Mine is Acer. There’s my clue then. On the wall by the tiny waiting space is a series of oak plaques carved with a poem. It’s taken me five days to decipher with the odd fluorescent light casting shadows in the wrong places, but I rather like it. There’s also a second hand book shop run by POOCH, a fundraising charity founded by a local man I know called Dave Hocking.
I’m getting to know my radiographers now, and we chat about this and that. I know exactly where to put my bum on the gel pad (much closer to the head than you’d think), and I know when I’m central, and which part of my neck needs to press into the rest, and the angle to place my nose and chin so the mask clamps without pressing. As one of them said, correct positioning is as much about me knowing it’s comfortable as it is about them measuring and lining up. The mask clamps, I wiggle my head slightly, there are some minor adjustments as they check either side, everyone except me leaves the room and we’re off.
I tend to close my eyes for the first minute or so, then once I feel okay with the pressure of the mask, I open them. The circular head of the machine begins overhead, then moves across and the imaging plates appear to the sides. This is the checking and lining up phase as far as I can work out. It’s similar to the feeling I get while sitting in my rocking chair at home, when people passing on the bridleway peer in through the sitting room window. Some even shade their eyes to get a better look.
Then the whirring starts. There’s a clunk and a jerk as the slab I’m on moves into position. At this point there’s nothing in front of me beyond the blurry bone-coloured plastic and the dark ceiling; in my peripheral vision to the right appears the machine head, like a sun rising. Pure 60s sci-fi, ominous, detached yet intrusive. When you feel someone’s eyes boring into your skull, this is the physical manifestation of how that feels, being probed by an alien you can’t quite see.
The machine head swings over the top, close to my face. The central area, glass-covered and framed by white plastic, turns. The machine head moves to the left, tilts on its axis, then begins to swing across and back to the right. The beep comes, and then a sound like a dying wasp trapped in a glass. This is the sound of the radiation, the particles being accelerated perhaps. I can feel it, a slight tingle that oscillates with the frequency of the wasp sound. All the while the dishwasher whirr continues in the background. There’s another beep, and the machine returns from right to left, tilting and stopping just above my left temple. Then it’s back to the middle, the machine staring straight at me from a foot above my face. There are some holes, some grey plastic parts. The reflections hide much. A blank, empty stare. What’s it thinking? The radiographer reappears, unclamps the mask, and I wait for the head to be raised so I can sit. All done. It’s taken maybe 20 minutes in total.
We return to B&Q, but not before I’ve eaten a rather nice fruit scone and then a Crank’s egg and salsa wrap from the oncology café. At this time of day I’m always hungry, and able to eat. Later on, I start to feel yeuch and eating isn’t an option. At the weekend with just the T and no rads, I felt slightly less nauseous. I’m unsure how much is T and how much is rads, but I think there’s a definite effect from the rads. I’ve taken to eating around 8, having popped an ondansetron a bit beforehand.
After three or four sessions in Acer my scalp is becoming sore, and I can feel some heat on both sides. The scar is reddening. Last night I used cold-pressed coconut oil as recommended somewhere on line, and gently covered the warm and sore areas along the right parietal area, and on the left where the rays have come through. These are the areas where my hair will fall out after 2 – 3 weeks, which will actually make it easier to oil, so there is a god. It felt better, post oiling, although I did look like a Brylcream girl. I washed it out with my gentle shampoo this morning, and it feels far less sore. I also get a right-sided focal headache that begins shortly after the treatment, and worsens till I go to bed. I’m taking paracetamol for that, but it’s perfectly bearable.
Another bonus is I’m sleeping. I feel generally drained, and tired in a can’t-be-arsed to do things kind of way. I can walk pretty well in the morning, but less so in the afternoon. I don’t feel sleepy. When I go to bed, I nod off in minutes (I never do this normally) and wake between 6 and 7.30. I can quite happily nod off again in the morning if I don’t get up. I’ve lost my morning heat sensitivity too, which I think is more down to the low dose of steroids. This morning I showered Bun, who was pretty manky. After that we went for a walk at Long Ash, but it was so hot I couldn’t bear the sun. I’m rocking the keep out of the sun look, but each time I move the hat blows off.
Today I have my weekly review with Dr Pascoe, and she’s happy with how I’m feeling and my blood counts are fine which is nice to know. She asks about headaches and nausea, and warns it’s likely to worsen since I’m only at the end of week one; however, the area being irradiated is relatively small. She shows me the prescribed area – the larger one I noticed at the start is actually a slice taken vertically through the brain rather than horizontally as I’d thought. This corresponds to a 3cm margin around the tumour site. Sarah says we’ll try to stop the dexamethasone altogether by the end of this phase of treatment if everything continues to go to plan.
I take my Temozolomide and go up to the Mustard Tree to await my radiotherapy slot; there I get chatting to two women with breast cancer. It’s the first time I’ve really engaged with anyone in the center generally, which isn’t like me at all. I wonder if it’s to do with the can’t be aresed-ness this week. Making conversation isn’t something I feel like doing. Nonetheless it was good to chat. Both of them volunteered that if things don’t work out for them (and I don’t know the details) they’re intending to stop treatment at the point when they become ill, to make the most of what they have left and to let nature take its course. Me too I say. We talk about wills, and about advance directives, both of which I need to address. I also learn the details of their recent marital breakups and we agree that friends and family are where it’s at when you have cancer. All in 20 minutes, cancer’s as much of an icebreaker for letting it all hang out emotionally as wild swimming.
I eat a scone at 10.30 then the time runs away with me, so I forgot to have an early lunch. I’m supposed to take my temozolomide when I get it at around 2.30 at oncology, but now it’s 1.30 and I need 2 hours of empty stomach beforehand. I drink a pint of water instead.
I’ve sorted the bar code machine in oncology, and it books me in for the meds appointment. Then I go through and receive my week’s supply, with the exception of the antibiotics. As I’m allergic to sulfasalasine I can’t take the Septrin which contains one of the sulfa drugs so Dr Sarah is having a think about a suitable replacement. So tomorrow, I’m to wait to see her after treatment and pick up the weekend’s supply.
We go over the medication which is ondansetron if required (my trusty Hunt period anti-emetic) and domperidone, also if required. The chemotherapy drug comes in three different-sized capsules, each of which is sealed in an individual foil package. I’m to take a total of 170mg daily, one hour before radiotherapy, and at least two hours after food, and one hour before food. I’m to avoid touching the capsules. So I take 1 x 140mg, 2 x 5mg, and 1 x 20mg. The woman who gives me the meds hasn’t seen the capsules before so I show her before washing them down with water. I wait with some trepidation, but nothing happens beyond the tight throat I get with dexamethasone and a dry mouth.
I return to the waiting area, and read my book for a while before I’m called through to radiotherapy. Once again, I’m name and address and dob checked, before being asked for the 50th time whether I might be pregnant. I tell them I’ll let them know if I pull, and they titter obediently.
I’m made comfortable on the slab again, and lined up with the marks before the face mask is clunked into place. It feels tighter today, and the flying saucer head obliterates the autumn branches against the sky, which I realise is a part of a large light insert. The three radiographers are all smiling and chatty, which helps no end. The lights are dimmed and the radiographers depart for their safe room as they take a set of images. The machine moves around my head, quite close in, the rectangular panels appearing in my slightly opaque peripheral vision which has a bone-coloured tinge from the honeycomb of the mask. The flying saucer moves to the side. I can’t really feel it, and I’m not sure when it’s going to start. The pulsing starts in my face.
Today the music is Eye of the Tiger, which forces me to concentrate on Katy Perry’s voice and how on earth it doesn’t crack and collapse at a range so close to her limit. I fix my eyes on one edge of the light panel, and feel entirely in control and relaxed. You’re gonna hear me rooooar!
Not much longer, Lynne they say, you’ll hear the whirring soon. Not much longer of Katy Perry I hope, maybe the whirring is so loud it’ll drown her out – but I think they mean the mask which I’ve forgotten about altogether. It’s all relative.
Then there’s a whirring, certainly not at roar level, and a whine, and the machine moves again. Ah, this must be the rays…there is a slightly warm feeling over Hunt, but as ever I might well be imagining it. The flying saucer manoeuvres over and jinks to its whirr. There is a beep, which sounds like a department store tannoy alert. Then a little later another, and then a third. I guess these are either starting or completing the different angles needed to zap the remains of Hunt’s smirk. I see the little Hunt smirk rootlets, zapped like sparkler trails.
The radiographer reappears, and warns me not to knock myself out on the machine (they call it the machine) which is about a foot above my head. She takes two more measurements and calls them out. Then the machine rises, and I sit. I ask them what the machine is. It’s called a linear accelerator, and the active part is the flying saucer. The rectangular panels are for imaging, so the equivalent of x-ray plates. My radiotherapy is intensity modulated radiotherapy (IMRT). Not many people know anything about radiotherapy, she says.
Dad and I head home, and I notice my head is slightly numb over the site, although it soon passes. I eat a Cranks wrap exactly an hour after the temozolomide. I rather enjoy it, and feel fine. The nausea hits me at home, two hours exactly from swallowing the capsules and shortly after I drink a glass of water that tastes like chemicals. The last time that happened, was when I was going down with Swine Flu a few years ago, and was utterly convinced there’d been some Camelford-style accident at the water treatment plant. I try a second swig of water, and it tastes better than the first. Then I start to belch and the bile rises. Down with the first Ondansetron. After half an hour I feel better, just vaguely yeuch. Later on, there’s a slight soreness over my scar, and it feels warmer than the other side of my head.
So I’m underway, and I have no problems with the mask or claustrophobia, and the temozolomide feels manageable so far. It helps that I have such faith in ondansetron, although its bottom blocking capability is second to none. Which reminds me to yam a couple of Laxido.
Sitting in a kind of seminar room with S in the Mustard Tree, tears materialise from outer space. I say that because I didn’t somehow have access to them from within myself, they kind of landed on me. Fear? Grief? I talk to S who is a counsellor about how I am, and about the looming treatment. I tell her about my needle fear; isn’t it odd that in descriptions, fear so often pricks, as do tears? One of those tiny things that is imprinted in my mind from the initial ambulance training course is that we never say the word prick when using a needle in case it’s taken the wrong way, whether for a blood glucose measurement or cannulation. We say sharp scratch. But sharp scratch doesn’t quite express what’s going on. I think of Sleeping Beauty pricking her finger, of the thorns that grew around her. A scratch is on the surface, it doesn’t pierce, break the boundary.
We talk generally about the treatment, and I explain how I deal with claustrophobia in my previously normal life, the life where I choose to swim into the cave and when the swell picks me up and pushes me to the roof I bob beneath the surface and swim through aquamarine, above constellations of starfish. I’m not pinioned by a mask staring at the geometry of the ceiling; that bright white chequerboard of tiles and lights boring down before being pushed into the machine that will irradiate a part of my brain, and I hope, tumourous Hunt’s Cheshire Cat smirk. A slight digression here; it was properly amusing to hear Dennis Skinner MP savaging Jeremy Hunt over his smirk when giving a statement over the Junior Doctors’ strike.
I’ve lost my focus in the past couple of weeks, scattered the rays across the political spectrum and spent too much time on social media. There’s that air of time disappearing, of desperation as more and more political nightmares vanish beneath the carpet and are replaced by others. The fear as the NHS crumbles and it’s blamed on the doctors. The thought that I’ll die and I won’t ever know what happens to it, that it’s lost forever. I can’t bear it. S talks about mindfulness, about moving back into the moment, not dwelling in the past, or in the future. The thing is, I don’t actually want to be here in this moment.
I’ve been trying also to tie up the mounting heap of admin I have, and the displacement of scattering political bullets over Twitter and Facebook has pretty much ensured I’ve not completed anything I meant to, including my tax return. Back to the days when Hunt grew in my brain, before I knew he was there, those days where I judged myself for that inability to complete tasks, or even get to grips with them at all. There’s also the advice given by a friend years ago when I found myself crying on the phone to her having chosen my then dog Bubble from the local dog pound and had to leave so many others behind; focus on your sphere of influence, she said. You can help one dog, do it well. And I did look after Bubble, give her a lovely life, train her, love her, feed her, walk for miles over the hills of Scotland and Dartmoor.
So I sit in a chair, close my eyes and relax as S talks me into my left foot. There I focus on each part as she mentions it, breathe into it, note sensations and move on. The focus comes over a few minutes, and I manage, as she reminds me, to notice when my mind wanders, to acknowledge it has, to bring it back to my left foot. It’s good that we started there, because My Left Foot is one of my favourite films. I have monkey mind, and the types of yoga I’ve done in the past tend to be active ones. When sitting and breathing, meditating, I can’t overcome the cramp from having tight hip joints nor the boredom of staying still and focussing on breathing. I start to fidget, daydream. Here, I’m managing remarkably well. I breathe into my foot, then out, and we move to another body part. S has previously wondered whether my medical knowledge will prevent me from breathing in and out of random body parts that aren’t lungs; but having a writer’s imagination I assure her it’s no problem, as long as I’m in the mood.
When we reach my chest a few minutes’ later I’m stuck. That shortness of breath blocks me as I move around it, sticks whatever it is that does the moving around. I’d tried to explain to S that my breathing is short, and that really is the best way I can describe it. A deep breath, a diaphragm-flattening breath, isn’t possible. I feel my steroid babies, the waistband of whatever too-tight clothes I’m wearing, and the abrasive quality of the air reaching my lungs, like tiny particles of sharp sand, or some chemical vapour scouring. The dull ache between my shoulder blades.
We move to my head. It’s uncomfortable. I’ve developed a headache over the past week, a fairly generalised headache still, but it’s moving, focusing more on the left than the right, and while it’s not a Hunt headache, it’s moving that way. Or is it? Is it in my abstract mind or my physiological mind? I’m imagining the Hunt-shaped hole in my brain. It’s closed, for sure. It was described as a space occupying lesion (SOL) initially, and the slight bulge I can feel over the craniotomy site, over which the palm of my hand fits nicely, makes me wonder. I’ve lost the carapace altogether now. But still I worry about Hunt’s return. The GBM is fast-growing, that’s why it’s so dangerous. And the fear of the GBM, the wondering. I can’t quite form the imagery beyond the Cheshire Cat smirk, an image of a vanishing as much as a materialising. So I get rather stuck in my head too. But I feel enough, enough to think I can manage. I’m to call and book another appointment when I know the timings for the treatment. It’s helped, not least to identify some ways in which I can regain some focus and get through the next six weeks.
After that I saw E in the Mustard Tree, and she pointed out that I’m looking ahead always to the radiotherapy effects on me, and seeing the worst case. It might not be that, so once again I have to move to the present, take a day at a time. I’m upset again, definitely out of control. She wonders if I hold grief in my chest. I hadn’t thought of that. I tell her about the needles. We talk about space; I don’t feel I can let go in my parents’ home, because I worry about them and it’s too complicated. I’m certainly not easy to live with in any case, and less so when grumpy on steroids and scared, and feeling pressured since I’m used to doing my own thing mostly without reference to anyone. Now I’m expected to organise, I am organised by others, constrained. Not in a mean way, but in a way that I feel deeply. Conflicts where you least expect them.
I’ve been feeling pretty horrid for a few days, with a constant, generalised headache and a face so swollen the sensation departed. The nearest description I can find for my face is a Cabbage Patch Kid, with sunken features tacked into overstuffed material (though in my case it’s red rather than white). My ankles and feet have also been puffy, so that the ligaments and tendons usually visible have vanished beneath over-proved dough.
I’ve been trying to sleep lying down with two pillows rather than semi-recumbent, and yesterday my left eye was swollen almost shut and I struggled to read through the blur. Since that’s the side I sleep on mostly, fluid retention seemed the most likely cause and so I banked up the pillows again last night with the result that I came to at 6am feeling three-quarters alive and with no headache. My cheekbones are almost palpable beneath the swelling, which has been hard as bone for weeks, like celebrity implants that jut a good 2cm from the originals. They’ve reduced by half I reckon. I peer at my ankles, half expecting to see footballs where the facial fluid has sloshed downhill, but they’re not far off the scale. So where’s it gone? I didn’t even wake in the night to pee. Cue Kardashian empowerment selfie of my bum… except in my case I fear the curvaceousness has merely inflated the twin cheeks of my steroid babies; one is perched above my stomach, and the other atop the abdomen.
Yesterday, I was invited by my former colleagues at the Tavistock Times for afternoon tea at the Horn of Plenty. A lovely afternoon chatting over quantities of lovely cakes and sandwiches, whilst admiring the view over the Tamar valley. Even our famous gourmand reporter was unable to polish off the last of the scones, jam and cream, and the steroid hunger failed me too. Thank you all for a lovely afternoon.
I heard yesterday that the treatment starts next week on Wednesday with a start of treatment review, and what’s called an onset verification or dummy run. Then on Thursday I start my six week radiotherapy and chemotherapy; the final appointment will be on the 8th June. It was a relief to know it’s coming, but I’m pretty apprehensive about the whole thing. It’s a bit like taking on an Iron Man but without the enjoyable parts to look forward to, and it’s largely out of my control. So I’m making the most of the remaining days, finishing off admin and planning some mini adventures.
A word about Macmillan, whom I don’t mention often enough. I went into the Mustard Tree Macmillan Cancer Centre at Derriford soon after being diagnosed. Since then I’ve had regular phone calls from the staff in both Plymouth and Tavistock. They’ve called when they know I’m waiting for news, they check up on appointments. I’ve had expert advice on negotiating the emotional and practical, benefits advice, and they completed and sent off my DS1500 form so I needed only to answer a few questions on the phone.
Tomorrow, I have an appointment with a Macmillan specialist who will help me with my radiotherapy worries and we’ll work on how to get through the treatment. Following that, I’ll see E who’s the first nurse I met. My Mum has also seen a counsellor to chat through her worries. There’s so much support there, and it helps that it’s not bound up with the emotional entaglements of family and friends. So if you are affected by cancer, do get in touch with them.