Movember, The Big C and Me, the next step... shuffle (part drei)

Movember, The Big C and Me, the next step... shuffle (part drei)

Hello and welcome back, you must be a glutton for punishment or just lost and have chanced upon this... well, this is the third instalment of this little story of mine, you may want to go back and see the other posts before getting your teeth in to this one.

Anyway, the show must go on...



From leaving hospital after the surgery, I was constantly wondering what was going on, I knew that the testicle was to be sent off to see what was going on, but I would have to wait for the results, I know that this isn't always a quick thing to happen. I randomly got a telephone call, ordinarily, I 'screen' my calls, if the number is not in my phone or I don't recognise it, i cancel it, search the number and generally it is spam, so they get blocked, but that had to change from the start of January really. I answered the call, and it was an Oncology nurse from the hospital where I had my operation, she explained that she was contacting me to discuss my results. She was nice, she explained a lot and she also confirmed that it was actually cancer, the tumour had been removed, there were signs of the cancer having spread a little into my perineum and was pressing up against some nerve endings, but it wasn't bad so not to worry. I mentioned about my hip being funny, I was having issues walking, and it was almost like I had a trapped nerve or something like that and I asked that is there any chance that it is linked to that at all, which she said was quite plausible. It was explained that I may need one round of chemotherapy to get rid of it but that I would be referred to the Christies where my options would be laid out for me.

I was still in a mode of limbo, I just wanted to get back to work, I knew now that I was having one round of chemo and I had started to do that internet searching thing again and had worked out that there are two main type of treatments that they may use, but then after narrowing it down a little, I worked out the chemo that I would probably have. I knew that the cycle was a month long, so, by my reckoning, I would be back at work in two months, easy peasy. So, I told work exactly that...

It was a funny thing, it was all moving on, I'd been told over the telephone that It was cancer, but I'd not seen it in writing, not that I didn't believe it of course, let’s face it, I 'knew' it was cancer before the operation... but, what if I need to show work something, to prove it... and as if by magic, a letter arrived, which was a diagnosis type of letter, quite in depth telling me that the size of the tumour was 67mm x 56mm x 49mm that all made it real... well, more real than it already was.

A bit of time went past, only a couple of days, and I had a phone call, well, three calls, arranging my first appointment at the Christies Hospital in Manchester, with a consultant. Now, when I actually had the appointment with the doctor, he was really good, but stated that it wasn't his area of expertise so, I would ultimately be referred to another doctor, in my mind, at that time, it was like this was a waste of time and a bit of a backwards step, a little bit gutting in a way, all I wanted to know was when I would be starting this one round of chemo... oh... wait a minute... that one round of chemo was now three rounds of chemo. However, as I had met with this consultant, he had been proactive and had arranged the next steps for me regardless of him not actually going to be having anything further to do with me, this sort of made up for it. Essentially, he arranged for me, a series of tests. These tests are to work out if you can have chemo and how much, the possible effects on your body and things like that.

The first test I had was a liver function test, this is easy, rock up at the hospital, they take some blood and then inject you with a radioactive tracer dye... I got no superpowers from it though... I even made sure I got a daddy long leg to bite me... oh well. You then hang round for a couple of hours, drinking water and what not and go back to get more bloods taken, then, again, another couple of hours loitering and then back for your final blood draw for the day, they send you packing after that, all good to drive home and what not.

Two days later, I had a hearing test Withington hospital, nothing really to tell you about it really, I have had a few of these over the years with work-based things and they've never been an issue. You sit in a soundproofed room and have some headphones on, your given a trigger push button thing to hold, when you hear a sound, you press the button, it’s as simple as that. The sounds that come out are of varying pitch, tone, and frequency, some you will hear, some will get dogs three miles away turning round and looking in your direction. Once you're done, they send you off on your merry way.

The day after, I was at another hospital, this time Wythenshawe and this was a lung function test, again, this was quite an easy test, you sit in a room and blow into a machine. You have to do it in different ways, hold your breath before exhaling a full set of lungs, exhaling rapidly, inhaling rapidly... just varied ways of breathing really, but someone is sat next to you explaining it all to you as you do it. Now, after my test, the nurse thought that I had done well, my lung capacity was well above what it should have been for my age, so that is a positive.

The idea with the lung function and hearing test is that you do them before and after chemo to see if there is any lasting damage, chemo is bad stuff, well, its good stuff... but its bad stuff.... its not good stuff at all.... it’s really bad stuff, but it can get rid of the cancer, however, in the process, it can affect your body in many many ways... and as a little hook, to tease you a little, if you don't know me personally... I can tell you, I got alllllllll the side effects possible...

One week after I had met the first consultant, I met my actual consultant at the Christies, luckily, as I had already consulted with a consultant, all the necessary consulting, tests and appointments had been done, so all that needed to be done would book me in for my actual chemo... this was to be the following week...  a week... that seems soon... I need to get my affairs in order, is that enough time...? Who knows, who cares, it's blinking happening.

Now, I am going to add a little story here, I think it’s known as a sidebar, if it isn't, I apologise... it is just an extra part of the whole long story. I like coffee, I have been experimenting with coffee for many years now, different methods and different coffees from different places both geographically and roasters, it has become a bit of a hobby. At this sort of point, it was what had formed, a lot of my time off work with the family, we would look at where we were going for whatever activity and we would look to see what the nearest coffee shop would be, not Costa and not Bab's Baps type places, speciality type places where we could try different coffees in different settings and soak up the atmosphere. Now, in 2019, I invested some pennies into a home espresso machine, so that I could hopefully, make a coffee shop quality coffee at home... if not one that is better than ones you could buy in some coffee shops, as it would be tailored to exactly what I like to taste. Anyway, we are getting near to the point of this, I assure you, if you know me, you will probably know that I am quite frivolous, frivolous may not be the right word, but I know what I like and I won't really compromise on things, I will research things and invariably, only the best will do. The first espresso machine I had was and still is the best all-rounder in its category... but... it isn't 'the' best. The one that I wanted was a La Marzocco Linea Mini. I first decided that I had to get a La Marzocco in around 2018 after a visit to Dark Woods Coffee Roasters, then, in October 2022, when La Marzocco released their latest machine designed for home use, the Linea Micro, I got to play with one at the Manchester Coffee show and... well, that was it, I would have one... soon... one day...I will have to save up, but I will have one. In the time just after my operation and before the visit to the consultant, we were chatting, about life, things I wanted to do before I die type of thing... it was a cheery Tuesday afternoon, I can assure you, you know, a train ride across America, eat a pizza from every L'Antica Pizzeria da Michelle across the world, see China and Japan... that kind of thing, you know and my wife... yes... your read that right, my wife said that I should go ahead and buy the La Marzocco Linea Mini that I wanted and we could put it in the kitchen... so... a week after I ordered it... which was seconds after she said this, it arrived... I called it Salvatore... he's baby blue... and makes amazing coffees, it is like night and day when compared to my old machine... well, more like a torrentially wet, cold, windy, gloomy late afternoon at Blackpool beach kind of day compared to a warm sun kissed beach on the Amalfi coast type of comparison really... anyway... I hope I've set the scene for you here, we shall revisit Sal, soon.

Meet Sal

The chemo which I was too have is known as 'three-day BEP'. Which is of course, BEP over three days... what is BEP, well, that's the chemicals that I would be slowly pickled with... over a three-day period... well, sort of three days, it's actually quite intensive as far as chemo goes and is actually a twenty-one-day cycle. Now, you can have BEP over four or five days as well, it all depends on the type of cancer as well as existing health issues from what I can gather. The first three (four or five) days of the cycle are spent at hospital as an inpatient, you then go home for a week and then pop back to hospital for a few hours on day 12 and then the same again on day 19, well, that was what it was for me. Then, at day 21, you have finished that cycle and may go straight into your next cycle, your three days as an inpatient all over again. The chemicals that form BEP are Bleomycin, Etoposide and Cisplatin. These chemicals all have their own job, they do different things within the body, and all have their own side effects as a result.

 Now, googling... It's bad, I flogged that to death in the first post I did... but... well, I still did a bit... honestly, I did no googling about the chemicals... I wanted to see what I would need to take to hospital mainly... all I got from it was, take comfy stuff... but, me being me, I wasn't going to be one to sit feeling sorry for myself, ringing a bell for the nurses attention whilst I'm lay there in my best Marks and Spencer PJ's... no, I wanted  to get up and wander about, have a shower and feel human... so that is what I set out to pack... I packed as I would for a few days away with the lads, duffle bag full of tech, a couple of books and clothes for the daytime as well as the night time.

My first Monday morning at Christies came round extremely quick... not just because the paragraph about the coffee machine took me days to write, but because it was so close from seeing the consultant. It was a weird morning, I had to be there for eight, getting across Manchester at that time of the day can be problematic at the best of times, so, the alarm was set really early, 0500 kind of early, I know it’s not that early, but, I've been off work for a while at this point and I'm out of the routine... even though I’d be up washed and have a coffee in my hand by eight at the latest, five is a whole new ball game, well, revisiting an old ball game I suppose. I'd spent the evening before packing my bag, making sure everything was charged up, you know, iPad to watch some films and TV shows, do some writing for the first of these posts and then blast around the streets of Grand Theft Auto on the Nintendo switch, it all uses battery power... Anyway, off we popped, my wife driving me to the hospital, I wanted to be there early, to miss the traffic but also find my way to the ward and what not.

Hospital Coffee

I had also made a coffee to take with me in my Keep Cup to have when I arrived. I can’t really remember what we spoke about on the way, but, I do remember, the song, 'You're not nineteen forever by the Courteeners' came on, now, this song, I already have a part of my life entwined with this, from May 2017 which was another milestone that life threw at me, it occasionally, when I sit there and think about the words, that time of my life, brings a bit of a tear to my eye, well, it is also really apt for this, I'm not nineteen, I know I'm not nineteen forever, but, this is a point in my life where I might die... I'm not going to die, but you get the thought process, I'm sure. We pulled up outside The Christie, just over the road, we could have driven into the entrance I guess, but, I'm glad we didn't really.... I got out of the car and went to get the bags out of the boot, yes, I had more than one bag with me... I had lots of stuff after all, but, just before I got to the boot, I saw my wife, I saw her face, It was the first proper time that I have seen her upset in a very long time, it isn't a nice sight to see, not my wife, to see someone you care about, someone you love, so upset. Within seconds of her looking at me and looking sad, she was crying, we were hugging... I was crying. I had already decided that I wasn't going to cry at any point in this, there’s nothing to cry about, again, I'm not going to die, I'm just going to hospital for a bit of treatment that will make me feel poop and I'll be back home for supper... but... no, those onion ninjas had other ideas. We said our goodbyes and that was it, off I wandered to the entrance, now, by the time I got to the door, my face would be back to normal, and no one would know, no one other than my wife would ever know that I got upset on the morning of my first round of the first cycle of chemo... I guess no one would ever know that I am a human in some ways.

I wandered round to the ward where I would be starting, it was in darkness, which makes sense really, anyone that would have been there would have been asleep... I'd not really taken that into account. As I walked through the door, a really friendly nurse... they were all friendly, came and spoke to me, clearly recognising that I was a newbie and it was my first time, sat me down and explained that id need a Covid test some swabs and what not before I could actually go on the ward, but she did take my bags off me so that I could relax a little and that they wouldn't be in the way. I sat there and started to drink my coffee. A chap came in, it wasn't his first time, he knew the staff, they were chatting and having a laugh about things, it was good to see and was extremely reassuring. He sat next to me, we didn't speak for a while and then he just started a conversation with me, within a short time, we were chatting away about the old cancer, our connection. Now, not to sound cliche, this man was an opposite to me in almost every single possible way, I do not know how, in what situation I would ever have sat and had a conversation with this man other than a hospital ward whilst waiting for chemo treatment to start, we had nothing in common, but we have everything in common. This was to be his last chemo treatment and he was about to start radio therapy; we discussed dates I'd be in, and he worked out when he'd be in. Sure enough, a few weeks later, he came in to see me when I was on my second round, to see how I was getting on. A truly remarkable man who I would have previously not known. Anyway, at some point later after taking three swabs, mouth armpit and groin, if you’re wondering, as well as a my Covid test, all thankfully coming back good, I was directed to bed two, my home for the next few days. I then unpacked some of my things, but more to the point, I unpacked the most important things, a load of treats I'd brought for the nurses and peeps on the ward.  A couple of packs of coke, loads of sweets, loads of biscuits and snack bars... possibly a bit too much in a way really, but it was extremely well received and got me upgraded to breakfast in bed/en-suite status (there was no en-suite on the ward).

One thing that didn't change throughout each of my rounds of chemo was, there’s a lot of waiting around for the chemo to be delivered. That first morning, they came round and took my food order for the day off the menu, I had my lunch and not long after lunch, I got started with my first infusion. Now, as id already said, I hadn't wanted to sit in bed all day, so, the next best available thing was the comfy armchair next to the bed, I sat there all day, hooked up to the machine. Now, as I had started so late, I can’t remember the actual time for the infusions, but after the couple of different chemicals, a flush or two after each one, plus fluids, it is a looooong day. I was hot and bothered, I couldn't take my gilet off from over my hoodie as I was hooked up to the pump, so I couldn't get comfy and nap on the bed... I didn't get in bed, after being disconnected from the pump until 0200. I didn't sleep well at all. I was awoken at 0500 by someone wanting to take my blood pressure and what not, which was all good, then at 0700, I was just awake, I'm assuming, shift change, general noise... I sat up in bed and watched the news on my iPad, before I knew it, it was 0800 and breakfast time. Weetabix with cold milk and a slice of toast with a cup of tea... it’s the small things but i genuinely loved that as my breakfast. Anyway, after that, it was showering time and get changed. I think, having that routine in hospital, really helped me, it was my morning, I did this on every visit to hospital, every day, regardless of how I was feeling, regardless how I was feeling before it, I always felt better after it.

So, how did it feel, having chemotherapy, well, if that first day was anything to go by, I've got this on lock down... other than being shattered and having a bad dose of heart burn... I was feeling great, bring it day two... I'm sure you'll be as much of a piece of cake as day one.

Well... yeah... not quite. It was weird, as soon as one of the chemicals went in, I could feel heart burn coming on, then, the next chemical, I just wanted to throw up and then I was so sleepy... I sat there with a sick bowl, retching, that was it, I knew I was having chemo now, that first day, got me lured into a false sense of security... I would not feel like I had on that Monday morning... well, I was going to say, for a long time, but the reality of it is, it’s more like, ever again! The night of day two, my wife and daughter came to see me, I know my wife knew I was lying when I had said I was all good, it was a doddle and what not, she knows me far too well.  Day three came round and I was shattered, I'd not slept well, I felt rotten... I cannot explain how I was feeling, it doesn't quantify to anything, I can’t say it’s like the worst cold you've ever had times a million, as its nothing like that. I can't say, did you ever have Covid and was ill from it, as it was nothing like that... the worst hangover you've ever had...? No, not even that, it is so different from anything I have ever had, I cannot give you a comparison, the truth of the matter is, unless you've had loads of cells systematically murdered by a chemical that's pumped in to your body in a bid to kill off a foreign body, you won't really know what it feels like and that's not to play the old cancer card and say, you don't know what it’s like man, you weren't there, it’s the truth, it is such an odd, horrible feeling, that I cannot pinpoint one single thing that made it horrible... if you get what I am trying to say, I'm not trying to be a dick, honest. By the end of day three I wanted to go home. I thought that my own comfy bed would be the best thing ever... when I say, my own bed, I of course don't mean my own bed, I mean one of the spare beds that the last and only time I slept in was not far off a year to the day of me being diagnosed with cancer, to when I had Covid. As your immunity is butchered, one cell at a time, you are more susceptible to getting Ill and when you get ill, you can get really ill, so, the least amount of outside interaction you get, the 'safer' you are, so, whilst my wife was taking precautions of wearing a mask when going shopping for example, it just made that bit of sense... plus, I could just sleep if I wanted or needed to. Whilst we are on the wearing of masks, I cannot believe how some people were when they saw you wearing a mask… I mean, when I could go out and walking around the hospitals, once on chemo, I looked ill, no eyebrows, a tallow tinge to my skin, its relatively obvious in a way, but, when my wife went out every Saturday morning to do the shopping at the times shops were opening, in a bid to stay away from the masses, some people were just… well… odd. I remember her telling me that one bloke had made a comment about covid not being a thing, she didn’t have to wear a mask anymore and was quite derogatory and abusive about it towards her, another person, followed her round and went out of their way to cough AT her, whenever possible which is just bizarre. It also goes to show how shitty we are as a society, whatever happened to the you do you and I shall do me type of approach, if it ever was a thing… what is the issue if someone is wearing a surgical face mask reminiscent to the covid times, should it bother you...? Probably not, but hey ho. I do know, that since my treatment whenever I have seen people wearing a face mask, before the recent resurgence of covid, it has made me wonder if the wearer is shielding as they’re looking after someone who is ill or because they themselves are ill, of course, it could be that they just like a warm face and they have a plethora of facemasks left over… what does it matter, well, it doesn’t really, but it probably shows that we should be a bit more tolerant of these things… I don’t know, I didn’t want this to be a preachy type thing, it was more about sharing the experiences along the way… and this little thing just wound me up a bit, I guess. Anyway... back to day three.

After my first three days in hospital, it is safe to say, I felt like shit, I was tired, so tired. The chemo drugs arrived at around 1300, straight after lunch. The food at the Christie was nice, far better than any of the other hospital food I’d had elsewhere, but it got to the point that I was no longer wanting to eat a lot, so a sandwich would more than suffice. My final infusion of chemicals wasn’t a long one, a couple of hours and then a bit of a flush and done. My wife had come out of work to pick me up, as it was visiting time, she was allowed to sit with me whilst I was finishing my chemo and getting some medication to take home and what not.

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