Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
It’s that time again, blood tests, a round of scans, followed by a stressful, wait to see how much worse my cancer has become. No matter how many times I go thru this it is always the most stressful of times.
SCANXIETY
That wait between having a scan and receiving results it is always difficult. This time round it has been particularly so. Hearing the news, only a few weeks ago, of not qualifying for a potentially life-saving trial, a trial I have been chasing for the past 4 years, possibly my only, slim, chance for a cure. A huge blow, coupled with extraordinarily stressful times at work plus, worrying, new, symptoms seemingly due to a change in medication, (for another chronic condition), I am not in the best of places, mentally or physically.
The ‘wait’ between test and ‘results’ even has it’s own name. A name that anyone who has, or (or had) cancer will be, all too, familiar with. The anxiety, felt before the results of their latest scan is named scanxiety.
Today’s visit to the new(ish) Liverpool Clatterbridge Cancer Hospital is a double header, An 8.30am thorax, pelvis/torso, CT Scan followed, (too closely), by a 9.10am prostate specific antigen (PSA) blood test.
Up at 7.00am, after a fretful, restless sleep,
It is freezing, Baltic!
The missus (Gail) is laid up, having badly damaged her knee, running at the annual Liverpool Santa-Dash Charity Run, Sunday last. The car is iced up -3 degrees (outside) says the instrument panel, it feels much colder, the first proper cold spell of the season. I am freezing. I can’t get warm or stay warm now-a-days indoors. I am, generally, cold when it is warm inside & outside.
7.30am – Car warmed up, de-iced and on my way.
The roads are clear, ‘oh my’! “That moon is huge”! It looks like it is at the bottom of the street. ‘So big’. I love the moon. I can’t take my eyes off it, ‘stop it’! ‘Keep your eyes on the road’! But? It’s so full and bright and so fuckin. BIG! This reminds me of my ‘gigging’ days, late nights travelling home from gigs, often travelling over the top, (over the Pennines), the hills, the Moors, clear sky’s, open fields, very little light pollution with only the moon and the stars for company. The moon would follow us home, keeping us company, keeping us safe. I never ever got bored of the moon.
I am on time (no time to stop for fuel though), I have enough, just, I think? I park on a single yellow, very close to the hospital, Blue Badge privileges, (how did I ever get thru a day without a blue badge)?
Clatterbridge, Liverpool is still very new and shinny. Luxurious open spaces, an extra large reception, bright white, white, WHITE! light & paint. There is even an impressive grand piano, also white (of course) playing, by itself, in the corner of the vast reception. A modern-day equivalent of a cowboy western saloon piano that plays automatically. Constant, soothing? classical music greets patients as we arrive.
I hate the piano
The piano, makes me think of WW2, specifically, Auschwitz concentration camp. I imagine a string quartet playing to the holocaust victims arriving at the concentration camp. Calming, classical music, an attempt to keep prisoners under control, as they arrived to meet their, unthinkable, fate.
8.00am – The auto check-in system rejects me, sending me, instead, to the main reception for check in. It was confused? I assume, because I had two (close to each other) appointments today?
At reception I was told to go to my second appointment first, radiology, to book in there for my scan and then go to ‘bloods’ my first appointment, and check in there for my phlebotomy appointment.
New Clatterbridge, the ground floor, as in the floor you enter the hospital on, the main reception areas, is floor -1. Not zero or ground floor….and there is that fucking soothing piano! Phlebotomy is floor 00 and Radiology floor -2. Confusing? So confusing there is a ‘porter’ waiting near the stairs and lifts, waiting to help confused people. A person employed to assist the confused.
As you approach the stairs and lifts, scratching your head, somebody is looking out for any puzzled expressions on patients faces. As 00 is two floors up, not the ground floor, they are watching for ‘no that can’t be right’? kind of expressions?
[He], Confusion prevention porter number 1 asks politely, ‘Where are you looking for?’ ‘Radiology‘, I reply, scratching my head, ‘you want floor 00, that’s actually two floors up, you should [as you are a cancer patient and might have mobility issues due to chemotherapy and other treatments], take the lift’? He points towards the lifts.
I follow advice and take the lift.
Radiology reception is vacant. Seconds later, a receptionist arrives, rushing, taking off her coat as she walks. She is in hospital blues and carrying three, full, birthday, gift bags. I explain, ‘I could not auto-sign in on arrival.’ She explains, ‘radiology use a totally independent system’, same computers, different software. ‘Complicated’, I say, thinking, I am not the only one who thinks this system is bollocks.
I explain, ‘I have two appointments that could potentially overlap’, I wonder, did they plan the two appointments this way? If so, if operated efficiently, this would actually be really efficient? I suggest, ‘that once booked into Radiology, I could go to ‘bloods’ whilst still drinking water as I go (ill explain the water later) and potentially be back, on time, as per schedule for my CT scan? The receptionist agrees.
I am booked in and off I go to phlebotomy, floor -1 area 10. The blood clinic is not yet open. One patient is waiting outside. I sit and write a few work emails. Blood Clinic opens. There are now three of us waiting. Nurses are busy setting up. I try to catch ‘the eye’ of several of them, any of them. I am anxious to explain that I am not (yet) signed in, I also have another appointment, which is why, I am early for my PSA (blood) appointment.
No eye contact, ‘Philip Jones’? Patient one who had been waiting ahead of me. ‘Katherine Wilks’, A wheel chair patient, [with her son]? I stand, I interrupt a nurse, I start to try to explain, she cuts me off ‘What’s your name’? I hesitate…., John Reynolds, ‘have you signed in, [at reception at the end of the area]? No, it was not open, unoccupied when I arrived, I try to explain again, and I am cut off again, ‘ill sign you in here, now.’ and she walks away, I see her entering information on a computer keyboard.
I am called next, ‘John Reynolds’, I have my PSA blood sample taken, no drama. Growing up, I was afraid of needles, almost to the point of it being a phobia. Once I started having regular, weekly, at some stages of my treatment, blood tests, I started to score the ‘testers’ the blood takers. The inconsistency was remarkable. I would score them in relation to how painful the experience had or had not been?
I have had so many tests now, I gave up after a couple of years. That said, this was a 6 (zero being no pain at all, ten being WTF). I head back to Radiology [via the lift].
Sitting in the large open reception area, patients arrive thru open lift doors, scratch their heads and those who ignore the helpful chap in reception, meander off. Some head to reception to ask for directions or confirmation they are in the correct area. I observe, most are older than myself. One, an elderly (75 plus) woman sits. She is nervously chatty, clearly very anxious ‘I have been awake since 4.00am’ she announces to nobody in particular. I drink ice cold water from white plastic cups, dispensed from a water urn machine.
CT, PET & MRI Scans
I have had many scans. I know the procedures off-pat. Arrive on time (which is 30 minutes earlier than your scan time), book in, complete a set of disclaimer forms, sit and drink 4-5 cups of water to enlarge the bladder (to assist imaging quality of the scan), transfer to imaging area. More forms (including rechecking the first forms), weighing, finger prick (blood sugar test), fit canular [ouch], saline injection [to test for any pain around the canular site], tape up canular, transfer to Scan Theatre dressing room.
I had been sitting in the dressing room, I can hear the scan taking place in the adjoining room. I recognise the voice, it’s the chatty women, ‘I have been awake since 4.00am’.
Door opens, ‘John Reynolds’, hi I’m Emma [looks about 18],pleasant, smiley, ‘have you had any CT scans before John?’ Regardless of my answer? Emma runs me thru the procedure, note by note. We go thru another disclaimer check and review the last form. I agree to proceed. I lay on the bed, ‘do you want a cushion under your knees, john? ’No thanks, I’m fine. More safety instructions pre-procedure and post-procedure, what to do if you experience pain when they inject the nuclear isotope into your arm, what to do if your arm suddenly falls off and starts to glow in the dark several days later!
‘Knowing the risks, are you [still] happy to proceed, John’? ‘Do you want a knee support’?
Actually, yes I do. Good, she is thinking, I don’t trust someone when they say they don’t! (I assume she meant I know better, and you could really do with a knee support because I have done this gig hundreds of times and everybody does really).
I drop my kecks below my buttocks, keeping my undies on, Emma covers my genital area with, blue canteen paper, ‘for my privacy’. The bed moves slowly forward, the machine starts to spin, incredibly fast, I am inserted into the doughnut shaped, scanner. They inject a larger than the first test dose of saline. No reaction, no pain, only a warm sensation as they inject the nuclear dye [isotope], followed by a weird metallic taste in my mouth and throat which feels more like a smell than a taste?
Have I wet myself? I remember Emma’s earlier briefing, this is normal, then, I actually do wet myself, just a little, I have just drank five cups of water and a full pint of water prior to leaving the house [taking my morning meds], my bladder is full.
I really do need to piss properly. I am wearing a leak pad [I wear pads all the time now]. No drama. The scan takes minutes (the older scanners back in the day would take far longer and were much less comfortable), thank fuck for technology, eh? I am mildly chlaustrophobic, the least amount of time spent in a whirling donut the better.
I am done. An information sheet, with explicit advice. More warnings of what to do if things go wrong, then, moved to another waiting area. Sit and wait for 30 minutes, to check for any adverse reactions to the nuclear dye, if ok, cannular removal and off to work. I leg it for a much-needed piss! Relief.
I take a seat in the small waiting area. There are two others waiting. One is chatty woman and another, an older, older, woman. They are in deep conversation. Another patient takes a seat, a male. As I sit down the older women [not chatty woman] says ‘I have been told I will just have to live with it there is nothing anyone can do, I have a large tumour in my lung and now a second that is what they described as angry’
The man, joins in, also a lung cancer patient, ‘have you not had any surgery, I had surgery in 2018 but it has come back’? The women replies, ‘I refused surgery’. ‘I listened to what they were saying [about me] and I decided I would leave it be, let it take it’s course’ I have worked in cancer wards, I’ve seen what Chemo, surgery and radiology does to people, and it still comes back, I don’t want to be that, it is horrible, what it does, total loss of dignity, so much pain and always the same result at the end anyway’
She continues, telling us about her cat, chatty women joins in, cat (and dog) talk. They discuss family, the effects (our) cancer has on family. Chatty women has problems eating yet feels she has to for her concerned son, despite it being a real effort for her [she has cancer in and around her jaw]. She is anxious as she starts radiotherapy 20th December for six weeks at Clatterbridge, Liverpool. 5 days per week for six weeks. She lives, 25 miles away in Ormskirk. She drives but could not manage those kinds of distances, 5 times per week, for six weeks, alone ‘at her age’. She prefers (has) to use public transport, ‘quite an ask‘, I think to myself?
She asks all of us about radiotherapy, asks if ‘we’ have had it, ‘what’s it is like’? I am listening attentively, wanted to hug her, the other woman and the man.
I decide it is time to go, when you arrive at radiography, post-scan, they say, ‘to remind them after 20 minutes or so to remove your canular‘. I get up and ask in the nurse’s office. Nurse Joan (approx. 30-35), happy smiley, asks, ‘so what are you doing for the rest of the day’? I reply, I’m off to work [it’s 10.00am]. ‘Where do you work’? I reply, ‘I work at LIPA? Do you know LIPA Joan’? She does, ‘what is it you do at LIPA?’ I reply,‘I am a teacher, teaching management, the Management of Music, Theatre, Entertainment & Events’. She asks, ‘do you know Harriet Merrion’? [She’s studying music, at LIPA].’ [I do not], Joan says,‘You must love your job?’ I am screaming inside ‘actually, no, I used to but now I fucking hate it’ but I say, out loud, ‘yes it’s fantastic’.
I wish my three new cancer buddies the best of luck and a happy Christmas and leave Clatterbridge feeling really sad but also really grateful; I am not Ukrainian, waking up hungry with no heating, no home, after going to sleep with no heating, no food, no home. I have incurable cancer but for others, this is worse, much worse? I am in bad shape but nothing like as bad as some [chatty and older women and man with lung cancer]. Most importantly of all, although I was alone there today, I am not alone with my cancer. I have love all around me.
Life is good
Thanks for Reading
Peace
Dying to Live 