The C Word

[Budgie]

The Most Difficult Thing In The World That I've Ever Had To Do

A few more days have passed now and it's Saturday Lunchtime. I’ve got a good handle on what's in store for me and what I am going to tell the kids while keeping my fears under-wraps.

Up rocks the eldest from Uni for lunch, we're having spill the beans on toast. Hugs all round and the usual catch-ups. We get a bit of lunch out of the way and I call the youngest down as I need to tell them both something. Typical teenager, always in his room, except when he wants stuff. We are all sat in the living room and I'm thinking 'are we sitting comfortably children, then let's begin'.

The daughter knows that I'm a bit poorly, chest infection is all I'd said when she rang to wish me happy birthday on D-Day earlier that week.

So I told them. Carefully, slowly and openly, what had happened in the past few weeks. They're both smart kids and deserve the truth. Not the whole truth.

I didn't tell them it was a 3-6mth terminal diagnosis and I didn't tell the it had spread to my brain. My daughter was doing her final years Psychology Degree and knows her biology. Telling her that would rip her to pieces.

But the treatment plan and chemo cycles, drugs I'll be on and what it could mean longer term. I explained that Cancer is nasty, but things are getting better year by year. Stopping often to give it time to sink in and ask any questions. Slipping in a few funny ditties and metaphors to keep it as light as I could. Telling them that I wasn't taking this lying down and will be fighting this tooth and nail.

Stating that there was no way I was going to miss seeing the eldest through graduation in 12 months and the youngest into through his O Levels and into college. That was the secondary goal. The actual pressing one, was to see my daughter to her 21st in 8 or 9 weeks’ time and a long shot at still being here at Christmas and able to enjoy it.

Tough going. An absolutely fucking horrible thing to go through. I'm roaring my eyes out now replaying it in my head, even though we're well past that target and I'm still here.

Both the kids took it really well. I hope they did, because with things like this you never really know until a long time afterwards. They both declared that they'd be here and help whenever they could. But I insisted they try and put this to one side, I'm not going anytime soon if I can help it and told them both to concentrate on their education for now and make me proud. I did tell the young lad that if he is really feeling it and fancies a bit of primal scream therapy, get arseholed (drunk as a skunk) for the first time in his life, smash up the town and fight everyone he sees that I would be right behind him all the way ha ha.

And it finally ended up, after a few sniffles and tears with a big familam group hug in a million and we were all laughing about the shituation, mostly. the rest of the day was spent doing what families do best, just enjoying each other’s company. Burritos for dinner and a good movie to finish.

The daughter got on a late train back to her digs to let her boyfriend know and the youngest went to bed.

So did I. Happier, as proud as a proud thing with the kid’s emotional strength and unconditional support and cried myself to sleep.

[Budgie]

The First Treatment Cycle - Run Up

Fast forward slightly and It’s The first week in September, Tuesday and the impending chemo day is on Thursday.

I've had a CT scan; bloods taken and just had my Face to Face with the Oncologist.

Everything is good to go. The bloods tests and scans don't show anything new to be concerned about, The appointment is still on.

I'm not better at all, still in constant pain around the back, right shoulder and right rib cage and chest. The "parrots ate them all's" are as much use as a proverbial chocolate fireguard. I'd managed to get some industrial strength co-codamol from my dad as he's on a constant prescription and 3 of those throughout the day takes that 'edge' off the pain. I tell her this and she says ok, tell your GP and he'll tweak your prescription for you.

We were chatting and she pipes up - "you know your problem, like most men of your generation, you keep it all in". Always did like the Beautiful South.

I just smile, nod and shrug my shoulders. "Yeah" I say, "and when we do ring in, sit in the phone queue for an hour because it IS really bad, you have to then fight the phone Nazis to actually get anything approaching an appointment in less than 2 weeks without them wanting to know the medical reasons, you know, those personal and DPA protected private details. As if!"

She smiled back, nodded and shrugged. I'm quite liking my Oncologist. . Other than that, I'm the proverbial 'Rubber Duck'. Smooth and calm on the surface, peddling like mad out of sight in the water. Time to go home and get ready.

[Budgie]

Funny Things do Happen

A little lightener after some of the heavy shit.

I had to get public transport for this consultation, wanting to keep any lifts aside for when it mattered. It was 3 different buses and 2 hours to get there, same back. I'd worked the schedule times and bus route numbers out and it was pretty good, 5 mins wait per connection, traffic permitting.

Got there no problem. It's about half 3 and I get on the return bus. Same bus number, same route. Except it wasn't . What should have been a direct through one city and to the next got to the first city but then went to the depot. Bit weird I thought but the driver got off and I saw him stroll to the Gents. Ahh, that's why, I thought. Errrm no way.

The next thing I know the bus is being driven into the Bus Wash. Like a car wash but scaled up for a double decker. I'm sat there, windows open when the thing spins up to speed and starts cleaning the bus. Water pissing in through the open windows. Hot days and Covid ventilation rules apply. the Water is getting closer, bus is shaking with the brushes I am on the top deck thinking o-oh. I rush through the spray, go downstairs and stand their hands pathetically opened, arms spread and shit the life out of the engineer. He switches it off and comes over all meathead "what the effing ell are you doing here"

I just stand there pissing myself laughing. This particular timed bus only went back to the first city. A replacement was in that bus station and I should have changed.

Luckily, I pleaded my ignorance, played up on my diagnosis and the Inspector sorted me a lift on a bus that was just being dropped off exactly where I wanted to go, No Stopping. Me and the driver had a good laugh about that but I ended up beating the time it would have taken and got an earlier connection back to where I was going.

He also told me that there was a Free, circular route, express shuttle that ran between the three local health authority hospitals. From 6 am to 11pm. mostly for shipping staff around who'd been reassigned with Covid. As long as I had my appt letters and showed the driver I would be fine. Noted for future ref and the jobs a good'en.

[Budgie]

The First Treatment Cycle - Chemo Day

Thursday 10th September 2020. 9:15am Chemo day.

I make my way to the chemo ward. it couldn't be in a further away location if they tried, along a long corridor. Lift to the top floor, another long corridor over a gantry and down another corridor to the ward. Not easy when I struggle getting 100 yards unaided right now. But stop rest repeat till I get there and 'burst' into the ward.

The Bloody Gynaecology ward. Cue sharp about turn. Ahh it’s that door with the fading, hand drawn sign.

It’s an isolation ward due the nature of people’s immune systems when on chemo. I ring the doorbell, sanitise my hands again and sit down. Couple of minutes and I'm temperature checked, Have another Covid swab, urrgh, handed a Perspex full-face mask for over my standard one and let in. A few minutes later and my stats are taken, Height, weight, blood pressure and O2 saturation levels/pulse rate all within the norms and its please come this way Budgie. I'll stick with my forum name not the real one. I've nothing to be afraid of now security wise, but, it’s that habit on forums where we still like to be careful

The actual 'shop floor' is a long, mixed sex ward, with a couple of closed-off side rooms, an emergency recovery room. Desks at both ends so that all patients are in direct line of sight of a nurse. The treatment areas are little side partitions, fully open to the ward each with 4 real comfy electric recliners, 26 in total and there's already 10 or 11 patients having their doses.

In the waiting area there is a big shiny 'school bell' along with a board full of pictures of people. I ask about this and it's the 'successfully completed treatment bell. Those who make it through their treatment cycles to the end, get to ring the bell. The nurses come out and cheer you on, take a picture for the wall of fame and hope they never see you again.

Spread of ages on the ward itself, one teenaged girl, the rest middle aged with couple of pensioners in the mix. plenty of cushions and the stands to hold the bags of 'goodies' to be drip fed into us. A little side table each and a nice view across a maintained public parkland/garden. Very calming. I got put in a chair, and coffee was supplied straight away without asking. A nurse came round to check if we wanted a meal or sandwich ordering. Not today thanks, I probably couldn't keep it down, but pass those double-dunkers here please. A good start. I’m not really anxious, just relaxed, curious and slightly apprehensive.

It’s only 10 minutes or so and a couple of smiling, friendly nurses do a 'Mr. Ben's Shopkeeper' on me. They know it’s my first time, and are really good at allaying any fears I've got. I've still not got any really and I nervously chuckle to myself. They explain the process and double check who I am and verify exactly which drugs I'm due. Check my hands/arms to see what my veins are like. All good and well defined. One of the nurses nips away to confirm my meds have been delivered, we're ready to go and time to start.

The basic process is this.

• Sterile wipe across chosen vein and insert a cannula - cannula is an ahem, large needle with a connector on, taped and 'strapped' on so that it doesn't easily come out when changing drips and moving around. Allowing multiple drugs to be inserted into the same hole. A screwed hosepipe connector in miniature with built in stop valve for when nothing is attached.
  Hook up to the cannula to a saline solution, just a 50ml syringe to make sure it’s working and flush out the cannula.
  The actual therapies are in drip bags. which are hung up, connected via flexible tube to the canula and gravity fed through a flow rate control valve, drip drip drip until empty.
  Hook up the Carboplatin bag and let that drip feed in. Disconnect and flush with saline.
  Repeat for the Permexatred
  Repeat for the Pembrolizumab
  Each drip takes between 20 minutes and an hour to feed in.

And that is it. It all seems straightforward, never really felt the needle going in and no immediate adverse reaction to any of the drugs. I’m going to breeze this game. Forgetting, or rather, not being yet aware of what's to come.

I have the canula removed and plastered over. given another injection. This being an anti-emetic to help prevent sickness and handed a bag of more drugs. Just a pack of anti-emetic tablets, 3 a day as required.

They asked me to stay half an hour just to keep their eye on me for any reactions. This could have been anaphylactic shock, heart palpitations, sudden blotchiness or spotting - especially around the canula site but arms eyes face/neck back chest groin legs are checked, loss of consciousness or going in to a seizure. None of the above apply. and they send me on my merry way.

All in about 4 hours from entering the ward. 2pm and I'm back home feet up taking it easy. Too much pharmaceuticals are in me and it’s time for some natural pressure relief.

That night and the next, no problems over and above what I'd been experiencing for the last 5 or 6 weeks. I was eating ok, if not quite as much but once again nothing to get concerned about. I had a few weird , blotchy spots on my right leg and around the canula site. I called Macmillan nurses number to get the downlow, but after listening and asking a few questions told me that it's not uncommon and only an issue if spreading or painful. I'll take that thank you very much.

[Budgie]

The First Treatment Cycle - Let the Puking Commence

Monday morning now, 4 days post chemotherapy infusions.

Having some shredded wheat for brekky. The milk tasted a bit weird as did the cereal, not gip inducing, but not normal. 5 minutes later and its up and in a sick bag. OK, been sick as I expected, and it was a 'normal' clear the stomach puke. To start with. I had a drink of water and splashed my face a bit to clean it up. 5 minutes later and here we go again. This time, retching. There's nothing to puke up. but there is.

The water came right back at me, followed by a vibrant, almost luminescent, greeny yellow, awful tasting vile bile. Oh man. This is a bit shit. I soon figured out it was the body trying to get rid of the toxic chemo drugs floating around.

That went on all week. Couldn't keep food and drinks down for more than half an hour or so. It's the constantly wanting to be sick that's crap. Got to keep the hydration up, got to get something inside long enough to feed me.

I know, a bit of marmite on toast, ideal that. Except that the bread just immediately came back up, hardly even got it down to be honest. It didn't taste bready that's for sure. Biscuits, the same. it’s as though overnight I inherited the taste buds of a completely different person.

After a week of this I was down to...cheese, cheesy nibbles, marmite on the finger, pears, grapes, melon, Plain lentils, porridge - Scottish style - water, salt and no milk. Oh, and, luckily, Yung Chow Fried Rice. But no other Chinese's or Indian's or fish and chips or pizza or burgers. Even bacon and mushroom sarnies were off the menu god-dang. Couldn't even jazz things up with sauces or spices.

I was struggling to cook meals every day for the young lad. Cooking smells would set the gipping off. He had a lot of soup, toast and ramen noodles that week. So, struggling through with what I could eat as and when I could eat it. This eat and puke ,drink and puke, rest and puke, regime carried on for about 9 days. Day and night before it eased up and I started going more than an hour or two without puking. All this and I was now breathless constantly. The lack of food meant my energy levels had flown the nest. I was a tired, lethargic mess.

Now it’s a different three words....CHEMO SUCKS BIGTIME.

[Budgie]

The First Treatment Cycle - Finally Settling Down a Bit

Coming on 2 weeks since chemo day and I'd settled down, got a bit of energy and breath back.

But the next cycle was starting again in a few days. Okidoki, at least I'm over it for now and tough as it’s been I've experienced worse.

I'm a bloody liar there lol, but got to keep the old pecker up. And, importantly, I was in the right frame of mind and determined to see it through as long as possible.

[Budgie]

On the Merry Go Round of Ongoing Treatment Cycles

Three weeks to the day after my last CT scan. With the last 4 or 5 days being mostly sick free, if not pain and discomfort free, giving me at least a partial relief from feeling totally crap. I do feel pretty chirpy. With a few tweaks to my meds and food/drinks I'm not quite as lacking in energy and my sleeps are getting better.

And so, it starts again. Same regime of pre-tests, pre-meds, actual therapies, home, fine for a day or two then 10 days or so of abject pukey awfulness. Recover a few days, rinse and repeat.

During the first few cycles my head is in a good place, it's the rest of me that’s struggling a bit. Every time I have chemo, I’m feeling a little bit worse, a little less energy, more lethargic, less oomph about wanting to actually do anything.

It’s still hard sleeping, although I have found the one position that is most comfortable. On my wrong side, laying on the tumorous lung so that I can actually breathe comfortably. Waking up every couple of hours during the night.

During the early cycles I decided to come clean to friends and the wider world. Everyone has been great, if a little shocked. Promises to meet up at some points are made. But, COVID restrictions and my declining....i.e., Zero, immune system has put paid to that. Plus, I simply can't keep any ale down, including my fave tipples of Rum or Brandy

I let my close circle of forum buddies in on what’s happened and, pretty much formally stand down from any admin/system/day2day gubbinses and remove all my forum privs in case I was to have a mad moment while under the influence of chemo or I was to die, leaving the keys to the green circle kingdom open to anyone on the PC. Id totally lost interest in forums and growing and needed any future time for myself.

[Budgie]

Fiery Chariot of Destruction

Due to the MacMillan nurse sorting out my medical benefits, I'd got hold of a new Mobility scooter. This is a godsend really. I thought I might be able to get a Motability Car, but brain cancer was reported to the DVLA and licence revoked so that was out of the picture. And the scooter meant I could, on the rare occasions I felt up to it get some fresh air and do little shopping jaunts.

That scooter is great, I’ve even got some plastic daggers to fit onto the wheels, Ben Hur styleee to mow down the pensioners, phone dawdlers and ignorant buggers. Currently on 627 points and rising. If you hear some mad, purple faced dude, wearing a red bandana/facemask with a spliff hanging from his waving fingers shouting "get out t'fucking road yer bastard....I suggest you do, and fast.

[Budgie]

Some Odd inspirations

During this time, I'd found out that one of my old buddies, same age had got exactly the same thing I had. And he'd been diagnosed at almost the same time.

3 months later and he was gone.

Weirdly I actually comfort from this. He'd gone, but I was still here kicking and fighting so I must be doing something right.

And Eddie Van Halen died. He also had the same as me with the same metastisization on the brain and adrenaline glands etc, But he'd got to 2 years. Now, every case is different, and me not having a millionaire rock star funding and ability to access whatever treatments he could, puts a big gap between what he could access and the treatments that I could. But, Still, 2years is 2 years so that gave me more incentive to stick with it.

RIP Eddie and Norman. Rather an odd inspiration.

[Budgie]

Christmas 2020

Christmas was fast approaching.

I'd got a support network of sorts. Got some cleaners to pop in every 2 weeks and do the heavy cleaning to keep on top of things. Parents acted as taxi's whilst I flitted between the different hospital sites. My son was great and kept the coffee and water on tap, did the shop runs and made his own dinners when I wasn't up to it.

I could hardly walk 50yds most days, and only used the stairs twice daily, to come down in the morning and up at night. I got hold of a portable, well they're all portable so a foldable wheelchair, pretty cool in carbon black, for hospital/Dr's appointments.

When I felt too tired, I slept. Not forcing any schedule other than the chemo cycles on my body. I tried to eat as much as I could when I could, but it really wasn't a great deal and my weight was very slowly dropping.

And guess who was due chemo on Christmas eve, yep, Moi. Not looking towards that at all. This could be my last ever Christmas with the family, dinner had all been arranged at the folks within our own little covid bubble and I didn't want to pop it. It was the unwritten undercurrent that this was my last Christmas. And I was still struggling to keep the energy levels up and food down post chemo ffs.

Had the chemo Christmas eve and home for about 2. Christmas morning, I was feeling rough but not too bad. Got my platter of pills down, packed some away for the day, put my glad rags on, belt in a notch, the daughter and her boyfriend dropped by and we all went up to the folks for dinner.

Surprisingly, I ate everything on my plate and then some. Got a few glasses of wine and some brandy down so I wasn't totally out of the Christmas loop. And it was a really good day. All back to mine for the evening, kids stopping over, and the celebrations continued. I had a really, really good day. First one in months

Boxing day I was back to the new normal. At least I had plenty of actual substance to puke up with the vile bile.