I’m on the train for Truro and Treliske. It’s Chemo Day! I’ve got a morning of tests and then the randomisation results to look forward to.
I feel achy and tired, not well slept. I’m pleased we’re starting the treatment, but not looking forward to being knocked about by the drugs at all.
I’ve left a scene of total chaos at home with lots of floor boards up and panelling down and furniture in disarray, piles of books and clothes, washing up not done. Yesterday was hard work and everything feels out of control. Not the calm start to chemo that I’d hoped for. This is really a result of the treatment being brought forward a week, but that in itself is a good thing, and I just have to hope that the first session is not too harmful to my health so that I can sort out the mess.
David the plumber and Paul the electrician will pick up the job today in my absence. Let’s hope it goes well and that I have hot water and heat tonight!
I’ve brought lots of cancer care reading to do today. It feels like going back to school suddenly, into a new class, into a new stream or something. Out of the old familiar world and into something similar but so different that everything changes. That’s what the chemo course feels like today. I’m going to have to work hard to stay on top of it…and I feel woefully unprepared. I feel nervous as if I were going into a series of exams for which I haven’t done any real revision. This is a recurrent nightmare for me of course, I recognise it and my reaction, and in the past I’ve always got away with it. So maybe I will again.
Well, the first test is a lung examination and then my full details get fed into the clinical trial randomisation computer and I find out what course of treatment I’ll be following.
My train is late, and I arrive just another train comes in from the other direction, it’s 820 and thousands of schoolchildren flood the platform. The turnstiles jam up, and when I finally get outside there are no taxis. I cross the road catch the second bus and call Caz at the hospital I’m running late. No problem she says.
I find my way to the respiratory department, and they’re waiting for me all smiles. I’m feeling hot and out of breath. I sit down at the machine, a weird aqualung with a snorkel mouthpiece and a black balloon underneath it, lots of tubes, oxygen and helium bottles. The nurse behind the apparatus with the computer screen which I can’t see. She carefully explained the exercises. These are to assess my lung capacity and the ability of my blood to carry oxygen. I am a bit nervous about this, because breathlessness is something that I’m suffering. And I don’t like it.
It goes like this. Your mouth around the mouthpiece, with a peg ton your nose, and start breathing normally, looking through the tubes at the nurse! Breathe normally. Okay, breathe normally. Then take a really deep breath. Hold it for eight seconds, and then breathe out as hard as you can. And keep breathing out, with the nurse saying “keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going keep going”.
It almost hurts to breathe this much air out. And then you get to take a big breath in and return to normal breathing feeling dizzy. Ahhh! Fizzz! Hissss! We do a couple of these exercises and then another one which I find very difficult.
This one involves normal breathing and then a series of deep breaths in which increasing amounts of helium are introduced into the oxygen mix. This reduces the amount of oxygen and blood and it feels like you’re suffocating. I struggle with this and struggle to swallow and struggle to keep it going. The nurse keeps saying encouraging things but I’m feeling pretty spaced out. I do keep it going, but I don’t feel like a done very well. These tests are important, because if I don’t pass I don’t get entered into the clinical trial for new test drug.
We repeat one of the earlier tests because some technicality and then we’re done. They’re both very friendly and encouraging these nurses, thanks guys sorry I didn’t get your names.
Then it’s back to the Haematology Department. I wait on my own in a room full of 40green and purple soft chairs. I can hear the quiet chat the receptionist and admin team through their hatch, but in here there’s a radio blaring trash and after a minute I get up and turn it right down. That’s better.
I get out the book that Jane got me on the Budwig flax oil cancer diet, and try to read the introductions, but I can’t really concentrate. It looks interesting though. After a while, Siobhan comes to get me and we go through to the ward rooms. This is getting to be more familiar to me now, and we go through a series of blood tests weight measurements height measurements and form filling all very efficiently and calmly. Siobhan is brilliant at taking the bloods I don’t even feel the prick from the needle.
Now back to the waiting room, there’s not much to do except wait for the lung test results to be sent off to the clinical trial program and all being well I’ll be entered into the randomisation process which will decide which arm of the trial I’ll be on – I’m hungry so I go to the hospital cafe and buy a ham and cheese sandwich and a banana. I guess a couple of hours passed, I can’t really remember what I did, I tried to read, people started coming and going the waiting room filled up, put my headphones on and listen to some music, I wrote a few notes on my iPad. I’m really very tired.
I’m on it. I’m on the new drug. That’s a big one. That’s a real help I feel good.
I also can’t remember whether it was Siobhan or Caz who came to get me and take me through to see Dr Kruger. Anyway, she calmly said that I’ve been accepted onto the A arm of the clinical trial for the new drug. Well that news ran through my veins like a warm injection. Dr Kruger was brisk and friendly and upbeat. Maybe he’s a bit pleased to finally have a patient who going to get the new drug. I record our session again on my iPad, in case I need to listen to it again.
We discussed the chest biopsy results and from memory I have cancer shows in my lymph nodes in my neck and groin, behind my sternum in my chest, possibly in my lower left lung, and in several vertebrae. My other organs like liver and spleen are fine. He says I only just passed a lung test, I think because my body is having trouble shifting oxygen as my haemoglobin count down. That would explain my breathlessness on exertion.
We also look at the results of the PET/CT scan on his computer. The images look fascinating, and I’d love to have a copy of them. I have to follow up David’s suggestion that you can get CT scan viewing software for the Mac. I asked Dr Kruger it’s possible to have any images and he has a go at producing some prints for me but can’t seem to get them out of the software. He does print off a couple of pages of report for me though.
Then I have to take my top off and sit on the couch and his cool hands feel my neck my armpits my abdomen and groin and a stethoscope listens to my breathing. Have I lost more weight? I feel a bit sticky and sweaty, and am quietly embarrassed for some reason.
I managed to say that I’m pleased to be on the the trial and I think it’s a good thing, but he remained professionally noncommittal.
I then have a bit of a break in the schedule, and Siobhan explains that the chemo session this afternoon will happen in a different part of the hospital, the Headland Unit. I’m not due there until 1:45 so I am free to go and have some lunch.
A Special Thing
I’m trying to see what food they have on the counter, looking past the people in the queue but not really seeing them. Quietly, a voice says
“Oh hello how are you?”
It’s Mr M wearing his usual blue jacket but no tie. I know his face well as we’ve met numerous times over the Penzance harbour issues, but I can’t immediately place his name, not expecting to see anyone I know here.
“Hello there, yes well I’m ok thank you, how are you?”
“Oh, I’m alright…ah, yes ok, i’ve got my father here…and…?”
He’s taken in the wrapped cannula showing below the arm of my fleece, and has probably seen the scar at my neck.
I like Mr M, we’ve had several conversations outside of the meeting rooms, like when I was restoring the house in Chapel Street for instance. He is friendly and interested and kind, and probably not much older than me although his suit sets him apart. I decide to just tell him.
“Actually, I’m here for my first chemotherapy session, I’ve been diagnosed with Hodgkin’s lymphoma.”
He looks at me slightly quizzically, head on one side.
“You know, I have some experience of this. Have you time to join me for a sandwich?”
A has his own experience of cancer, he’s in the middle of it. He has a rare form of non-Hodgkin’s lymphoma which manifested three years ago. It threw his life into turmoil especially as the initial prognosis was not good, but he’s on top of it. He’s not had chemotherapy, but is managing it by other means and monitoring. The obscurity of his case has meant that he sought out experts in America, and now there is good liaison between the consultants there and his team here in Treliske. He rates the team here very highly. We talk quietly about our two experiences, and I take in what I can but I’m not eating my sandwich and aware of the time ticking by and the need to get back to the Headland unit. I ask him about his farming and family and tell him a bit about what I’m up to. I explained that I’m pretty positive, and taking it day by day, that I haven’t asked for a prognosis, as I’d rather fill my time with new thoughts and ideas.
I have to go, and we leave each other, he giving me his card. We’ll be in touch. What a special encounter that was. I feel connected to life and lives. What I mean is, it’s not what one would choose this illness but the experience is full and rich and amazing.
Chemotherapy Session 1
The Headland Unit is calm and bright light. Daylight. The main treatment room has four chairs blues and purples down each side and there are three or maybe four other patients hooked up receiving their drugs. The atmosphere is cheerful. As I walked in, the waiting room was full, which I didn’t really understand but Siobhan was there and guided me through it, but not before i’ve noticed the polystyrene manikin with the bad wig on its head on the front of the desk! Yo! Crazy! Here we go…
Siobhan introduces me to the team, and leaves me in their hands. No, I’m not sure that’s right, she stays and administers the first couple of chemo drugs, one as a drip and one as an injection. The latter is blood red, and will apparently make my piss go red too. The afternoon turned into a bit of a dream, hours passed, the cannula in my arm is comfortable no problems there, and I rest between each drug, with fresh saline dripping through me to cool the veins. Not all hospitals do this, it seems, but it’s something this team likes because it makes the drugs more gentle on the body. I feel in very good hands.
I tried to read but can’t really concentrate. So I get out my iPad and listen to some music, and then start up garage band and put down a simple drum track followed by more instruments and it all comes together there in the ward. Chemohead and the Lymphomas doing their thing.
I think about these chemicals going into me, and the cellular conflict about to take place. I’m happy this is happening, but kind of freaked out. How will I handle this toxin?
Just before I get my last shot, the Brentuximab, the special one, there is a sort of hospital soap drama episode. The room where the drugs are stored goes into lockdown, and the nurses can’t get in. There is myself and another patient I can’t see, in another room, both waiting for the last one. But there is no easy way in. Three black uniformed security men turn up looking like a SWAT team and there’s comedy between them and the nurses. Lovely! I think one of the men kicked the doors in, anyway there’s a sort of scuffle and a bang, and lots of laughter. I get my last drug.
I’m out by eight, and Ali with Millie is there in the van to collect me. I’m so lucky. So much love around me, and Millie snuggles in my lap like she knows I need it.
I think we eat salmon, potatoes, and cabbage from the garden but my mind is going and I forgotten as I write. It’s late, and I go to bed, Alison joining me to keep me company and warm. A strange thing happens. Dr Kruger warned me that the chemo drugs might have a stimulant effect but he was pretty non-specific. I thought it might just be like caffeine but in fact ha ha it turns out to be Viagra!
It’s okay, Alison and I are good friends and old friends. There’s quite a lot of merriment though! And sweetness.
It’s curious, one of the effects of the growing cancer in me over the last year or more has been a complete loss of Mojo. I lost my Mojo! For God’s sake! It’s not that I just didn’t see girls in the street I didn’t really think about sex at all. In some ways it’s been a relief. But pretty unusual, and I wondered about it at the time thinking it might just be age creeping up on me. But no it was the cancer creeping up on me the fucker! Well hey, it’s something to look forward to when I get better…
But it raises other questions too, because over the last year or so I really withdrew from society, finding it difficult and tiring but not feeling the spark either. What is that spark? It’s not sex, it’s not flirting, it’s about having energy to meet people on a level and spark and fly and laugh, and cancer took this out of me too but I didn’t know what it was. The sneaky fucker stole my Mojo.
It’s been quite a day.