The C Word

[Budgie]

Life Gets Slowly Repetitive, Getting Worried a Bit

Into the New Year of 2021

Spirits up and with August in the crosshairs of my survivo-scope (tm). I continued the 3 weekly Medi-go-round cycle of scans, bloods, pills, consultations and full body poisoning. Commencing 14th January.

I wasn't coping too bad but over the next few months to Easter I was getting worse overall. Deffo couldn’t walk further than 20yards now without stopping and started using the wheelchair more. I had the chariot of fire to scoot about on, but not when its near freezing and more outside. It takes ages to warm up afterwards so I avoid the cold whenever I can.

I can feel the build-up of the chemo and its effects. I also lost about 9kg as I could hardly eat for 2 weeks post chemo and barely ate anything at all on the third week. Half of the meals I prepped, or rang in, never got past one mouthful before puking back like a baby, most times I got a full meal down it was only for 6hours max and it'd be back up. Other times I'd make something just to totally not fancy it when done.

I was getting more of everything in a way, more sick, more tired and for longer, more lacking the will to do stuff, I could hardly make a cuppa most of the time and hardly get the prolonged breath to shout up for the young 'un to make me one on the days/times that I couldn't. When I cooked anything more than in the in and out of the oven or microwave, toast, I literally couldn’t stand the heat and had to get out of there. Or time it so I spent only a minute or two at a time in the kitchen. Managed a few nice roasts and curries and stuff if just not as often.

Following one of my Jan/Feb consults I was told that I would be coming off the Carboplatin leaving Pembrolizumab for immunotherapy and single dose of Permexatred for the chemo. This ought to make post chemo a little bit easier, well, you'd have thought so.

I didn't always have consultations with my Lung Oncologist. I had them with dieticians, pharmacists, psychologist/exercise guru, Lung specialists. Going over bits of my condition within their specialities. Got my meds tweaked a bit, some dietary nutrient supplements, some Class AAA* Exploding Bum Powders and took on board their answers to my questions and some of the recommendations.

I could feel the steroids doing their thing as well, making me less tolerant of people and I snapped at a few folks for little reason. Then other times I'd get desperate to the point of crying out almost screaming. Well dodgy for my usual character, if not always my frame of mind.

End of February and basically, I was starting to feel the overall effects of progressive chemo toxins building up, even after coming off one of the chemo drugs. I had my dose of 4th March chemo/immune as normal and following blood test results showed worsening drops and build ups where they weren't wanted. Meaning I had to have both extra bloods taken and an infusion of platelets and blood infusion a week later. Supposedly to help get my white blood cells up and give my flagging immune system a boost. Bit of a bind having to go for the extra two appts but the bloods weren't too painful for the vampires to get at.

The bigger and fiddlier cannulas, once a suitable vein was found that they could get into without me needing anaesthetic, stayed in place long enough to put in the actual transfusions hurt a lot. It took plenty of jabbing, pricking, twisting and turning of needles along with the gripping, teeth grinding , opera singing-come-growling sound effects from me.

[Budgie]

It All Goes a Bit Pete Tong

11th March 2020.

Woke up a bit rough as usual, heased (a combo of heaved and eased) myself out of bed, got up, sat down knackered with a brew. Straight away I realized I needed a rare shit; a good one I could tell with the rumbly stomach cramps. Had that rare shit but got breathless on the squeeze, came back down again, sat down knackered, puked my coffee up into my little sick bucket I kept with me, wiped the snotty tears from my eyes and cheeks (it was a good puke) and slumped breathless on the sofa. Twice up and down stairs in 5 minutes wasn't good to me at all.

During the day I was constantly out of breath, wheezing and coughing, puking and hacking mucus, Loads of really viscous, stringy, sticky clear mucus with added phlegm. I was painfully sore all down my back and shoulders, arms, ribs and chest and throat. Everywhere not sore was aching.

By evening I was slumped over, totally shagged out like never before, arms drooped by my sides trying to get a breathing rhythm going and I'd suffered way too many "coughing-attack induced, unable to breathe in, "this is it I’m going down" panic moments. I'm thinking this IS bad now. I'd no energy at all and could barely lift a muscle or speak more than a couple of words at a time. I was juggling with the idea of calling the cancer emergency number for advice but during another coughing fit decided I had to get the young lad down via text msg. He called 999 and asked for an ambulance. Told them I was in trouble breathing, having cancer treatments and getting worse by the minute. It was about half 9.

From this point on for a while It all gets a bit foggy but I remember the paramedics arriving, forcing oxygen mask on me, me freaking out as not had one before and still struggling to breathe. Few secs later I was ok with it, they checked my stats, and injected me with something before wheeling me out on a stretcher into an ambulance/LWB flashing blue lights outside. All the neighbours out gawking or curtain twitching, as would I in different circumstances. Before I know it, we're nee-gnawing along the motorway having a high speed canula insertion. Totally painless btw.

I get taken into A&E, straight off for an Xray and about an hour later they are wheeling me naked except for an arse-out gown into local/emergency operating clinic. I’ve got pleurisy fluid build-up that’s squashing onto my collapsing lung which is now also filling and it needs draining fast. They needed to stick a tube down my throat and drain some fluid and cut a hole in my side into the pleural cavity (The layer between my lung and ribs) to drain away the fluid. I don’t remember any pain, but it was an awake surgery and I did get lots of uncomfortable sensations and feelings when they cut into my side opened it up and then and stitched in the drainage tube. Next thing I remember is being wheeled out and moved onto a ward to sleep it off in a darkened, quiet room at the very end of the HDU (High Dependency Unit)Ward . It was about 3am. I fell fast asleep and was out of it for hours while the anaesthetic wore off and I caught up with my oxygen levels a bit post-op.

[Budgie]

The Darkened Room of Death

I woke up to tubes and pipes and monitors beeping, not sure what the time was, perhaps mid-morning. I was in a sole occupancy room, big one with just one bed, a few monitors and bathroom off. No TV, no music, no access to lights or anything, no bed controls to hand to make myself comfortable. I had a tube, or rather a hosepipe hanging from my right lung and attached to a 10l plastic tub. This was full of yellowish brown, greeny, blood specked fluid. I could hardly move so snoozed as best I could, waiting for the nurses to come and do whatever it is they have to do.

Unfortunately, they did nothing. For 3 days. No doctor’s visits, no updates, no warm drinks, no good or edible food. No response when pressing the buzzer. I really felt as though I'd been left to die. I even had to struggle to the loo to empty the bucket as no-one was answering and the fluid had travelled almost up the pipe back to my lungs, twice! I was only a few days out of chemo, so still really struggling with appetite, could barely walk with tiredness, still puking, with no painkillers, none of my usual pills and no nurses there to even listen to the state I was in.

3 days in, Monday morning and a doctor finally did his rounds, but he wasn’t a listener, he was a teller like some of the arrogant consultant docs can be. And he wanted me to have a couple of x-rays to check me over. Went into radiography and had my x-rays/scans. I noticed on my notes at the time a DNR comment but thought nothing of it. When I got wheeled back into my ward room I also noticed DNR was on the door. Now I’m no medical encoding expert but I know what DNR means, Do Not Resuscitate!! Who the fucking hell were they to say that I wasn't a candidate for recovery so I started asking questions, making more demands of decent food and drink and meds and generally made myself a bit of an arse. It was the only way I could get any responses and any answers. By the next morning, following me protesting with them to a) get me out of this Death Room and b) start treating me as opposed to leaving me to die, I got transferred onto the normal HDU/ACU Ward in a room with some other patients.

[Budgie]

Ward Life

Now I was on the ward I could figure out a few things straight away. No stable internet, no phone signal being the first. Then it turns out that COVID restriction means that all wards and rooms within wards were locked down. No-one in or out except for PPE'd nurses, docs, cleaners and porters. Absolutely no visitors. Couldn't even go for a stroll, if I was able to. That was shit as I couldn’t see or speak to any family to let them know what my condition was like.

At least now I had a bit of life in the room, someone to chat to and have a laugh with.

In one bed we had Shannon Matthews' Older junkie cousin. Literally came from the same street as the poor lass. Came in to get stabilised and nick drugs. He'd fucked up his insides totally and was on permanent catheter. But the bastard would play on it. Whenever he wanted a fix or was rattling a bit, the bag would get splattered about. Followed him to the lav one day and it was like walking into an open sewer, god knows what he'd been splatting around but it wasn't nice. He would slope off 3 or 4 times a day to meet a mate outside for a fix, regardless of wards being shut. They got him stable and rid of him after a few days. He wasn't missed and he'd nowt to say anyway.

Then we had the Italian Georgio. He was the spitting image of the Salvatore Tessio who grassed up Vito Corleone when he got shot in the godfather movie...'Michael, it was justa da business...' Good bloke, had same as me, lung cancer and fluid build-up, with a tube, but his juice was like blackcurrant juice not a sewage smoothie like mine. Ran a restaurant all his life and used to despair like a proper Italian foodie at the state of the meals on offer via the NHS.

Pete the diabetic plumber. His diabetes was really advanced and he looked very gaunt and weak. So bad that he'd been married in hospital the week before as it was touch and go for him. But he pulled round enough to get discharged for a while. He put me onto MST's. These are morphine caps in a slow-release form to help control pain over longer term. At this point I'd not been prescribed anything stronger than paracetamol. He was also grabbing as many as he could because, as it turns out, he'd sell them on in the pub to his weightlifting mates.

One evening we had the incredible vanishing man. Came in one evening and wasn't well at all. Half hour after being bedded in he'd emptied his bowels and at some point in the night the crash team came in. He wasn’t there the next morning.

And we also had old Jud. Idle old bugger with a glass-back you could just tell. Spit dab of the 'comedian' Bobby Nutt. South Yorkshire fella with a proper strong, old skool, 'KES' accent Severe COPD so he was on the gas and air 24/7. A bit of a wheeler dealer who managed to sell a mobility scooter from his hospital bed to Pete the plumber. His missus ran baccy out of France and Rotterdam. Tried nicking a nebuliser machine but it was too way big to fit in his bag. Liked his Horses.

There were a few other patients over the next few weeks but no-one to write home about. And at least the ones above i could have a chat and a laugh with.

[Budgie]

Enough is Enough

For almost 3 weeks this went on. Me feeling pretty shit, no outside contact, no decent tea or coffee, abysmal food, restrictive processes stopped nurses from even making a cuppa, waiting hours for a jug of water and other than three times daily rounds of stats, blood samples & basic meds. Daily CT scans to check on progress and all the while with a great pipe and slop bucket hanging off my side. Sleep was rare. I was in agony from the op but it meant I had to sleep sitting up in one not so comfortable position all the time. I was over my chemo and slightly perkier but not happy being in hospital and with no end in sight.

So, a Monday morning came around and the Consultants and Specialists were doing their rounds. They're all crowded round my bed mumbling to themselves as they do. I let them finish and put a few things to them. What is going on and what’s the prognosis, why is care so crap, not so much as a painkiller or a cuppa, why was no-one monitoring my drain and why was I having to empty the thing myself.

I told them politely, directly and forcefully in no uncertain terms, and made it quite clear that I felt as though I was being left to Die. Took them by surprise, I think. But it got me some info. My lung had collapsed, the fluid was infected with Septicemia AKA Sepsis and the antibiotics weren't working. I was looking at another operation to attempt to re-inflate my lung but that could be weeks away yet. Jeez, not more weeks on the ward and more week’s recovery that’s not what I wanted to hear. I complained about the zero quality of life I had, compounded by covid restrictions and hospital lack of phone signal, I made it clear I didn't want to be there under existing circumstances and would be better off at home where at least I had some home comforts and family to look after me. The Docs took this on board and said they would look into the options.

Two days later I'd been put on oxygen, got some proper anti-biotics and painkillers prescribed, plus the nurses were actually making note of fluid discharges and emptying it. My wounds got a bit more attentions and redressed, I even had a canula replaced that had been in 3 weeks. When I mentioned this to the nurse, she looked quite aghast, a bog standard one would never be inserted that long without regular checks for infections/movement. Typical of my experience here I replied.

A couple of days later I got an update. I was booked in for an operation in three weeks at a different hospital but would have to stay as inpatient until called up. Not happy I said, why can't I go home and self-medicate till then? he came back a few hours later and had prescribed me a novel mobile drainage device not yet wideley avaiable, A mobile Ambulatory Rocket. Simply a small bag with valves for emptying it that was discreet and could be hung from a belt loop. Way better than lugging a bucket around. This got fitted, they had to re-stitch the pipe as it had worked a bit loose but other than that I was now free to go home. Yeah. The next morning, I was temporarily discharged to the care of my local GP and District Nurses to wait for my operation.

I still felt crap from the chemo/cancer and had the usual symptoms but When I'd made a coffee, a large one and sat down on the setee at home that afternoon I felt the most relieved, if not the happiest I'd been in months.

[Budgie]

My Turn to Operate

Three weeks on and I'm now in a different hospital, St James in Leeds, having pre-meds and getting bedded down for the night. My operation is scheduled first thing in the morning. The surgeon pops his head in to check up on me and let me know what’s going to be happening.

My lung was collapsed, and the pleural cavity that surrounds and lubricates/protects the lung from the rib cage had shrunk around my collapsed lung. Imagine a balloon that has deflated over time into a wrinkled mess, that’s what my pleural cavity was like, This had shrunk around my collapsed lung and would not re-inflate itself so they were going to perform a 'Pleural VATS Washout'. Basically, to cut me open, section a rib (remove it) so they had room to manoeuvre , cut into the outer lung and flush bleachy fluid around the lung to clear out the infected fluids and attempt to unstick the pleural cavity hopefully allowing everything to re-inflate.

I slept fitfully. The last time I had an op was at 4yrs old with appendicitis and would be lying if I said I wasn't shitting myself at the prospect.

Wheeled in, anaesthetic injected and that was me gone. Never felt a thing and 4 hours later was coming round on a ward. As the meds wore off, I was in agony but the nurses soon came round and gave me some good painkillers which took the edge of things. A day later I was feeling well perky. I'd got a new drain fitted, more scars to show off, and was eager to get up and out of there a.s.a.p. Day or so later after more scans, bloods and tests and I was told that the operation wasn't a success, the lung hadn't re-inflated and I now had a punctured lung to contend with as well. Oh well, at least I gave that a shot. There was nothing else they could now do for that.

A common side effect of the surgery I'd had was leaking air getting under the skin and travelling around the body. Very weird. When I pressed certain areas of my body/neck/shoulders I could hear a crackly sound like a squeezed crisp packet. That was the air under my skin and it's called a Post-Operative Surgical Emphysema. With the lung punctured air was escaping into my body and gravitates to the lower layers of the skin. It meant that I would be kept as inpatient until the punctured lung was healed, the infections I had were gone, the emphysema had cleared up and no other problems surfaced. Jeezus H, here comes another three weeks stuck on a ward.

Luckily, the staff at St. James were way ahead of the game compared to the last shower at Pinderfields. They looked after me well. The food was better, and indeed they had a 'secret menu'. The guy next to me told me about it. Basically, a halal menu, but it was bloody tasty and edible with a better selection than the normal menu. Great. Also, they allowed us to phone takeaways in on an evening. We were still under lock and key with Covid but the staff went that extra mile to make sure it impacted on the patients as little as possible. And, the porters would happily make a diversion via the coffee machines on the way back from daily rounds of scans and tests. Top batting.

A couple of rounds of anti-biotics did the trick to stop any new hospital acquired infections and cleared up the existing infection I had around my lung. I was stable, gaining mobility, if still as bloody sore and achy as a bloody sore and achy thing. My O2 levels were ok, pulse and everything fine, breathing stable ready to go home. It took three bloody days to get out though.

They had to check I was ok clinically, that I would be able to cope in the world and had people to call on if needed, that the District nurses had been readied and added me into their visitor lists, to be prescribed all the meds I needed, to have my weekly follow up clinic visits booked in and finally to be signed off by the Head Nurse and consultant. When this finally all came together, I had to wait for PTS, the Patient Transport Service, to arrange to pick me up and take me home. Half eleven at night it was but not complaining. I just wanted out and finally, nearly 4 weeks after admission for surgery I was back home. And I'd got a nice bit of grass knocking about. Took me ages to find it as the cleaners had been in and re-arranged everything, but by 2am I was in a much happier place. I even got all the way upstairs without pause for breath or being totally knackered out.

2 Weeks after that, I was in clinic having the drainpipe removed and stitched back up. I'd healed well and was generally feeling relatively ok so got discharged back to the care of my oncologist. All this crap I'd almost forgotten about the cancer, almost, it was still a bloody pain and I still had the usual symptoms. But I was home, felling as good as I could and ready for the next round of treatments for cancer to re-start.

[Budgie]

Weight Problems

One thing that had happened over these few weeks was I lost a lot of weight.

Over the course of chemo I'd lost about 4 kilos, moslty in the run up to my transfusions. While in hospital I'd lost another 12+Kilos and was down to 59k. I'd started at 78kg. 20kilos is a lot to lose, 3 stone in old money and I was looking like Id just got out of a Japanese POW camp and had hardly any body fat on me. It's quite a worry as it means no energy stores so if things did go tits up again I'd have no reserves.

The dietician had previously said that any weight lost would never really come back while the cancer was active and I was being treated with chemotherapy.

[Budgie]

End of Chemo

A week later and I'm having a face to face with my oncologist to go over things and work out the next round of treatments they had in store for me.

Except there wasn't to be any more chemo or immunotherapy treatments. As I'd been off chemo for nearly 9 weeks it was too long a gap between chemo cycles to continue. Meaning no more chemo. And, no more immunotherapy treatments. I’m not 100% certain of the reason why, she just said that we'd broken the treatment cycle and it couldn't be re-started at the moment. She re-iterated that I was palliative and that I should just try and make the most of things while they monitored me on a monthly basis.

If anything happened in the meantime, I had the emergency cancer numbers to ring and that was that. No more chemo.

[Budgie]

One Magic Morning

July 2021

I was still poorly but just about coping. The worst thing on my mind was that with no more active treatments I was in for the long inevitable grind to oblivion. So, I got myself into a daily routine, trying to keep active, ear as much as I could and drinking water, loads of water to flush the existing chemo from my system. Still looking after the young lad who was now back at mine after staying with his mum when I was in hospital helped keep me in focus and getting out and about as much as possible on my chariot.

And then Sun rose on the Magic Morning.

I don’t know how or why, but I woke up one morning and I felt really good, invigorated and full of beans. First time in donkeys. I had my appetite back, I didn't constantly want to chuck up, I wasn't quite as sore and I could keep on my feet for a while without resting. The lethargy and tiredness had mostly disappeared and I felt like a completely new man. I soon worked out it must be the combination of finally fully healing from the Op and that the chemo toxins which sit in your organs were clearing out of my system at last.

This carried on. I had a great summer and autumn without feeling too bad at all and my head was totally clear of any negative thoughts unless I had to cover them. My young lad had his 16th and left high school having aced all his exams despite what was going on behind the scenes in his real world. I blasted a few box sets, caught up with movies, cleared out loads of now unwanted crap from the house got myself a new recliner chair to lounge about in and make it easier to get in and out of down the line if needed.

Got myself a new steering wheel/joystick and some Rally/F1 games and a graphics card instslled so I cold have a few hours on that to ease the boredom, Daytime telly mostly sucks anyway and I was totally shielding and under lockdown now being bored stuck in at home nearly all the time.

I even shocked the parents by scooting up to theirs one Sunday morning for the first time since starting treatment. Well surprised they were, and happy. chatting away it came out that they really thought it was all-over when I got 999'd to hospital. The hospital couldn't or wouldn't give them any positive prognosis and they were expecting the worse. Made me consider my own mortality big time hearing that. But I told them I wasn't popping my coils just yet and I just wanted to make the most of the time I had left.

Had a weird moment though, Sean Locke died of cancer and it struck home a bit then it was care for cancer week whatever it's called for charity and on TV was loads of depressing cancer programs designed to tug at hearts and purse strings. I did feel down for a few days but soon got over that.

[Budgie]

Right Here, Right Now - Part I

December 2021.

I'm still pretty stable but get a feeling that things are changing inside. Nothing that would stand out, but my gut was telling me changes were happening. I'd had my November round of bloods and scans and was due a F2F meet with the oncologist but the scans went astray so had to cancel that one and rearrange scans and f2f consult again.

Around now I figured I'd catch up with a few of my forum buddies from the green circle and update them as to progress or otherwise. This led me over to GR420 and the idea to put up my tale as a blog of sorts. Deciding to fully open up about it and here we are. I’m not growing anymore but still like the forums now and again, but I don't have anywhere near as much time to devote to them. A little blog would bring me back into the fold a bit and allow me to pass on a few green snippets as and when I could an enjoy the forum laughs now and again

And that was the plan : to create a cancer thread and blog that. Either just to now or as long as I could if it wasn't too depressing for peeps. I made a start on it and fleshed out a timeline of events intending to move it onto the open forum just after Christmas when I hd written it up more.

And then I got my December scan results in and it was Face 2 face time again. The news wasn't the best and any plans on documenting things would have to be put on hold. The lung cancer was growing again and they wanted me to undergo radiotherapy treatment. Which if successful, could open up other treatment options.

These options were :

• Nothing. Well, that’s certainly a no-no.
  Novel Targeted Treatment. Some new treatments had become available targeting certain cancer gene mutations and I was having some biopsy samples sent to the research centre to see if I had any suitable mutations that could be targeted and treated with the new therapy.
  Different Chemotherapy drug altogether. Docetaxel which would be 3 to 4 cycles only. Unfortunately, it is only 9% effective for my cancers and stage.

I told her to keep all my options open, send the biopsy samples down and refer me a.s.a.p. for radiotherapy.

It was time to reset again, take stock and do some more learning.