Scanxiety

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 and the short, stressful, wait to see how much worse my cancer is. No matter how many times I go thru this it is always the most stressful of times within my treatment cycle.

SCANXIETY

The wait between having a scan and getting the results is always difficult, this time round it has been particularly so. Hearing difficult news, only a few weeks ago, of not qualifying for a potentially life-saving trial, a trial I I have been chasing for the past 4 years. A hugely, disappointing blow, coupled with extraordinarily stressful times at work and worrying, new, symptoms from a change in medication, for another condition, I am not in the best of places, mentally or physically. 

That feeling has a special name, a name that anyone who has, or has had cancer of any sort, will have felt before the results of their latest scan.

It’s called scanxiety.

Todays visit to the new(ish) Liverpool Clatterbridge Cancer Hospital is a double header, An 8.30am thorax, pelvis/torso, CT Scan via Radiology followed, (too closely), by a 9.10am PSA Blood Test, via Phlebotomy.   

Up at 7.00am, without too much sleep, it is fucking 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 Temp) says the instrument panel, the first proper cold spell of the season. I am freezing. I can’t get warm or stay warm now-a-days (part of my condition)? I am cold when it is warm outside.

7.30am – De-iced the car and on my way. The roads are clear, my that moon is fucking huge! It looks like it is at the bottom of the street.

I love the moon, can’t take my eyes off it, ‘stop it’! ‘Keep your eyes on the road’! It is full, bright and fucking BIG! It 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, accompanying us. The moon would follow us, keeping us company, keeping us safe?

I am on time (no time to stop for fuel though), I have enough, just! 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 shinney. Bright, open spaces, extra large reception, white white WHITE. There is even an impressive WHITE grand piano playing in the corner! A modern-day equivalent of a Cowboy western saloon piano that plays automatically. Constant, soothing classical music as you arrive. I hate the piano!

The music, the piano makes me think of WW2 string quartets that would play to holocaust victims arriving at concentration camps to be either worked to death or exterminated. Calming classical music, an attempt to keep them calm as they approached their, inevitable, catastrophic fate.

8.00am – The auto check-in system rejected me, sending me instead to the main reception to check in. I assume because I had two near simultaneous appointments to sign in for?

At reception I was told to go to Radiology reception first, to book in there for my scan and then to go to ‘bloods’ and check in there for my second appointment. At 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. Bloods is floor 00 and Radiology floor -2. Confusing?

There is a ‘porter’ waiting near the stairs and lifts.  

As you approach the stairs and lifts, scratching your head, he is looking out for any puzzled expressions on patients faces as 00 is two floors up, not on the ground floor, no that can’t be kind of expressions? He asks politely, ‘Where are you looking for?’ Radiology, I reply, ‘ahh 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’?

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 back, ‘Radiology use a totally independent system’ [I don’t know why, she comments], same computers different software. ‘Complicated’, I say.

I explain I have two appointments that could potentially overlap [I wonder did they plan the two appointments this way]? If so, I think to myself, if operated efficiently, this would be actually really efficient of them. 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. She 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 send 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 many 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 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] occupied 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 panel.

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, 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 meander off. Some head to reception to ask for directions or confirmation they are in the correct area. Most are older than myself. One woman sits. She is nervously chatty, clearly very anxious ‘I have been awake since 4.00am’ she announces to nobody. I drink ice cold out of white plastic cups, dispensed from a machine.

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], injection of caline [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 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 forms 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 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).

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 whirl, I am inserted into the doughnut shaped, scanner. They inject a larger than the first dose of saline with no reaction, no pain. There is 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?

It feels like I have wet myself. I actually do wet myself, only a little. I have just drank five cups of water and a full pint of water prior to leaving the house [to take 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], canular removal and off to work.

I leg it for a much-needed piss!

I take a seat in the small waiting area. There are two others waiting. One is chatty woman and another, older woman. They are in deep conversation. Another patient takes a seat, an older 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 the same result at the end’

She continues, telling us about her cat, chatty women joins in, cat (and dog) talk. We 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. She has to use public transport, quite an ask?

She asks all of us about radiotherapy, asks if ‘we’ have had it, ‘what’s it is like’?  I wanted to hug her and the other woman.

I decide it is time to go, at radiography 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’m off back to work [it’s 10.00am]. ‘Oh, where do you work’? ‘I work at LIPA? Do you know LIPA’? She does, ‘what is it you do at LIPA?‘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].

‘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 left 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, things can be 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

Published by Riff

Husband to my inspirational, (long suffering,) wife Gail, father to two, amazing (adult) children, Aubrey & Perri, teacher, former guitarist. When I started this blog I quickly became granda(r) to my beautiful, first grandson Henderson. Grandparenting, something I was relishing but had began to believe I would not get to experience. I now have three incredible grandsons, Henderson, Fennec and just days ago Nate. I Love people. I love my family, my incredible friends, I have love(d) what I do (my Job), I love Music, Glastonbury Festival, Cars, Everton .... I love many things but, most of all, I fucking love life.

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