Yeuch

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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.

 

 

 

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The weekend effect

It was all going so well… I had a lovely visit from one of my mastectomy friends who came from Cambridge on a walking weekend and stopped off, bearing cake, including the best Bakewell tart ever. It was lovely to see her. I was feeling okay till dinner time, at which point the nausea and headache struck. Ondansetron and paracetamol didn’t help, and by 10pm there was no change so I took a second Ondansetron. I slept sitting up, and woke at 4 with a headache and nausea. So the weekend effect strikes again; I have my weekly review on Thursday afternoon and then everything changes ready for the weekend.

So on Saturday I doubled the Ondansetron to 8mg morning and evening, to no effect. I toyed with the idea of calling the out of hours GP, but I’m pretty sure the cause is brain swelling from radiotherapy. I wonder whether having the weekend off will help, but Dr Sarah has already explained that it’s about fractions of doses of radiotherapy, and those build. So I took a second 2mg of dexamethasone at 12. I still felt nauseous and headachy on Sunday, when I took 4mg of dex in the morning. I also dropped one of the steroids while trying to take it, but couldn’t find it on the floor. Then I noticed a small white blur in Bun’s water bowl; there it is, the mostly dissolved little pill. Just imagine the results of that, Bun on roids!

I feel down about upping the steroids which as you know make me feel all-round crap. At that dose they start to cause steroid myopathy (muscle weakness especially in the thighs and upper arms). I’ve got a lovely trip planned next weekend, and I was thinking that it looked hopeful that I could do it. Still, the focus has to be on getting through this six weeks, and on managing the signs and symptoms. Maybe the myopathy won’t reestablish itself for a couple of weeks. As Plum said I know it’s worth doing this treatment in terms of extra good time, so I have to stick my head down and get through it. Also as of Thursday I’ll be two weeks in which is a significant proportion.

I’ve over-committed myself, voluntarily, and and spent much of the weekend failing to finish the feature I’m writing for the Tavistock Times, and fighting to make some curtains for my brother and sister-in-law’s bus. It was curtain Armageddon, with a series of disasters involving some pink tailor’s chalk that turned out to be wax and wouldn’t come off, shrinkage in the wash that took 3cm from the length (I told you I should have washed the material first Mum), and unpicking 1.8m of machine-stitching using a pin and some dressmaking shears, wearing a Petzl head torch because I can’t see well enough and we’d lost the stitch unpicker, and the shops are closed. It was all okay in the end, and the curtains were duly installed in the bus using the only ten curtain hooks we had. The two cushions I’d made in the week also looked pretty good. I managed to eat dinner (currently the meal I have trouble with) but then went through 3 hours of being unable to keep my eyes open, which kept happening in the two weeks before Hunt was diagnosed. It’s more than tiredness. Bun asked to go out, and I just couldn’t summon the energy to get up from my bean bag. In the end I rolled onto the floor on all fours and forced myself to go downstairs an inch at a time like Peter Crouch’s robot goal celebration in super-slomo.

I did sleep last night, and woke at 6 feeling as alert as I ever do in the mornings. So today I’ll speak to one of the oncology staff about what to do, bearing in mind I now have another five fractions of IMRT coming up.

Kari returned from Iceland full of stories about her new best friend whom she’d met with near her home in the far north of the country.  Kari found this new friend via Facebook after she was told about her by a man she met – who’s probably quite famous but she can’t remember his name – on a tv programme she appeared on as a part of her Diamond Duke of Edinbugh ambassador role. This woman tans hides in the north of Iceland in a disused herring processing plant. She’s tanned seal hides including from a near-term foetus found inside its mother, all of whom drowned in fishing nets; such a horrible thought. This woman teaches Inuit how to tan hides too, since much of their knowledge and skill has been lost.

There are geothermal chimneys in the fjord near to the woman’s home, that are normally only found in the very deep ocean, but which here are just meters from the surface. The sea is still utterly freezing, however. Kari is utterly enthused. I want to swim over the chimneys, and to meet Kari’s new best friend. Something to look forward to.

 

 

One down five to go

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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.

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IMRT treatment area through the horizontal plane
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IMRT treatment area through the vertical plane

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.