The C Word

[Budgie]

The C word

Hello all,

Could be a long read this, and its perhaps not for the faint of heart. It is 100% the open and honest truth, no messing and diplomacy. So, look away now if that applies to you. It’s not all doom and gloom though.

There's no way to skirt around certain things in life when the shit hits the fan. And last year my particular fan spread that really steaming, smelly, drippy shit far and wide, dairy-farmer on a slurry mission styleee. Yep. the Big C, Cancer It got me in its sights and hit hard. Not something that people really look into or understand until it strikes someone really close and I was pretty much in that frame of mind, despite having family who got over it along with family and friends who didn’t. I kept it completely under wraps too, except to the nearest and dearest and close friends.

But, I’ve learned a lot the past 18months, mostly medical and cancer related, but it took a while and wasn’t easy to find out and put it into my own context and make sense of it all. I soon found out it was bloody hard to find real world, personal experience of what actually happens.

So, I'm still here, obviously, and after a bit of careful consideration, a bit of encouragement from some of my close forum buddies, you know who you are, including the gr420 crew to tweak it so I could work on this away from the open forum, I decided that I really ought to capture my direct experiences and put my adventures in Cancerland down for all to read. Hopefully be able to take away some good information, and have a good approximation of what happens. Maybe take inspiration, maybe not.

Every patient is different and copes, or not, with things how they can in their own way. There's nothing but birth and death that's certain in life and no guarantees that what I'm writing would apply to everyone. But it only needs to enlighten a few and it’s worth the effort.

Its been very therapeutic writing this down, has helped me make sense of whats gone on, has brought up emotions and also helped me to deal with whats happening. Tough to actually put down some things but I'm glad Ive done it now.

So, take one of the comfy recliners, spark or top up and get your reading glasses on.

[Budgie]

Bit of Background History

I was 54 years old when it started. Up till then I always tried to keep fairly fit and healthy.

Brought, or dragged, up in a northern mining town and industrial city. Lots of soot in the air, chimneys puking 24/7, The UKs 3 biggest power coal burning power stations in line of sight from the top of a local hill. Up till my 20th, I’d done all sorts of work. Some nasty, dirty and a bit grimy. IE, Worked in a sewage station, building new and upgrading old, demolition work - Fred Dibnah styleee, gods honest, he was my hero for a while. Plumber/sparkies mate as a schoolkid at 14 on. Given all the crawlspace, roof, attic jobs with all the dust and crap. I came across asbestos often, even the dreaded Blue asbestos in old mills we knocked down - and this was before the government admitted how bloody dangerous the stuff was. I even use to chuck the white roof panel type on street fires to enjoy it exploding into a cloud of snow. Active, hardworking jobs that were often bloody dangerous, but fun. Change of direction in life, and spent most of my life in officey environments as one of the original programming geeks. .Geek in no way bearing any resemblance to what really went on

Not a big heavy drinker, kids popping out and hangovers getting worse as you get older put paid to that. I calmed down on that front 15 years ago. I did like my ale though, and have more than my share of mental sessions, even woke up in hospital on 16 birthday through Vodka and Black Beer Cocktails but only ever really a social, Friday/Saturday drinker. Could handle my ale though....most of the time.

I've smoked all my life. from nicking woodbines, park drive and tab ends from my grandad as a nipper and pretty much regular smoker at 14. Things were a whole lot different in the 60's and 70's. Despite a couple of serious efforts at stopping the past few years I failed and still smoke now. Baccy though mostly since my late teens. Old Holborn 12.5g could last all week at one point. But, 20 a day for 40years.

Very little processed foods, and steady on the takeaways. I always try and cook my own food, not full on 5-a-day but a decent, varied diet. I do like proper, done in lard chips though.

Weed isn't a vice. But yeah, it still counts, deep inhales and what have you. And, like many in the UK, experienced the dubious pleasures of Moroccan soap bars for way too long. No wonder I could get 9bars for £150 at one point when you think of what the smugglers had mixed it with. It’s one of the reasons why I started growing properly in the first place to be fair. Not had any of that shite for well over 15years at least now. Never really a bong, lung, bottle fan. Chillums, loved them with some nice hash or oil in....wow he he. Done concerts and festivals and raves and clubs and

Yep, I have done speed in dribs and dabs, phsychonauticals both chemical and organic, Guilty as charged. But never over continuous extended use. And I never entertained getting into Class A's. 'The mans' classifications not mine. Are E's class A, don't know? But yep, proper old skool first generation, no monging feel the love doves and smiley ones.

For a long time, I considered my only vices to be coffee, the sugar in my coffee and cigs.

Yep, I also hit a few mild depressions over the years without realising till much later. But, pull up the socks and cracking on got me over them sharpish. I did have a bad depression, leading to proper anxiety and awful thoughts 7 or 8 years back, where I had to get on the meds. Simple build-up of stress from 20yrs high demand contracts with little let up between assignments and a wife who wasn't any use nor ornament adding to the mix. Once again, I soon dropped those totally, changed direction, pulled the socks up and got on with life. Even after diagnosis I haven't had negative feelings.

Other than the occasional accident or two, the childhood usual's, appendicitis, and a quinsy 10 years back I hardly ever get ill. Only had flu, proper sweat the bed for a week flu, once about 5 years back. Never even liked paracetamol, aspirins or what have you and handle pain pretty well. Mind control....a bit of quiet meditation always worked well enough. So, when something is wrong. I know.

[Budgie]

Trouble Starts

Mid July 2020

I'd been having had a couple of days slightly sleepless nights, feeling a bit off it, but hey ho, crack on its just the old immune system kicking in. I’m a single parent with a 14y going on 15y (going on 30y) old lad at home bless him and we've got a great bond and are both pretty settled in after a messy divorce with all the associated crap. Can’t be getting too poorly. I’m working night shifts to be able to get him off to school, kipping and getting up for when he's due home Trying to make the most of things as he's growing fast

Couple of days later and I'm getting worse. My chest is sore, my neck is sore, my right shoulder is absolutely killing me. I can’t sleep on the usual side as I'm struggling to breathe that way and am forced to suck it in and sleep on the sore side.

I also started with really heavy night sweats, hot, cold, hot, cold and carry on all night. Waking up with matted hair, peeling the cheeks from sodden pillows with a damp duvet and mattress. So yeah, definitely something not right here.

We'd been in COVID19 lockdown a few months already and I was in a Covid bubble for the sake of the parents who are both starting to get on, both had their own cancer scares and old age problems that were coming on. I'm thinking it might be Covid after all.

Ring the GP...oh, you need to ring the covid hotline.
Ring the hotline and I've been poorly over 4 days so they wouldn't do a test.
Back to the GP and...oh well, keep drinking, keep warm, take some paracetamol. Aka, sorry mate there's fuck all we'll do. Fair enough, it’s what I expected. Even after stating I don’t ring to waste doctors time unless I’m really ill.

Roll forward over that weekend and Monday I'm still bad, even worse really. Having to sit, stooped over, arms hanging loosely just to breathe and be slightly comfortable. As it happens it is middle aged MOT day down at the local GP practise. Blood pressure checks, blood tests, cholesterol, heart/pulse rate, the usual 12 monthly that you get.

I walk down there, it's a pleasant 15-minute stroll down by the river. Usually. This time, I had to stop twice to catch my breath, no energy at all. By the time I had cleared disease control and got into the district nurse you think I'd sprinted down. The district nurse comes out, takes one look and says I will have to sit down and relax a few minutes to settle myself before the tests. I said I'd barely walked a mile to get there. She went off to the GP side and had a word with him without me knowing. The stat's done, and they were ok, she said she’d had a word and the GP would ring me in the next day or so.

Back home again and no improvement the next 36 hours. I wake up one morning to the phone ringing, 8am. And it’s my GP. Just waking up, I start hacking and coughing a bit, but manage to explain my symptoms again. All he says is that sounds quite bad I'll book you an x-ray at the local hospital and well take it from there.

A week later, still no better, I have the x-ray and go home. The day after, first thing, the GP calls, he's booked me an appointment at one of our local hospitals as something is showing and they want to have a good listen, tap and prod session. Same day I get a call from the hospital and they will have to do it via zoom if possible. The hospital is deluged with Covid patients, especially the chest and lung departments. No problemo.

[Budgie]

Initial investigations

So, I put the phone down. And click. That's a bit too fast a response for comfort. And in my mind, it’s a couple of things.

• A really bad chest infection
  it is Covid but surely, they would have done the test first?
  It is going to be a tumour.

By this time, I can barely walk 50 yards and getting up and down the stairs is a tow, so a phone consult is great. At 1:30pm on the allotted day we connect up and start.

What is it then doc? Well, we can see a few things in that area, but mainly it’s a shadow we've spotted. A mass in your right lung about 12-14cm diameter! We've booked you in for later this week for a consultation and some further tests. To me that is 'Big Potato'/Grapefruit territory. Good that somethings been spotted and wheels are spinning up, but not good.

I keep calm, don't start googling anything. I need facts. And I need to prepare for the worst. Three days later and I'm in the Consultant Oncologist’s office.

She confirms what the Lung Specialist said and lists the tests I'm having in the next few hours. Does the stethoscope thang, back tapping, breath in, and out, and in, and out. She asks a few questions about history and current condition. Then it’s off to the clinic rooms.

• Ultrasound and rather a large needle in the back to get a 100ml fluid sample from the lining that sits between the lung and diaphragm, Risky in itself due to possibility of puncturing. But they get the samples needed to check for cancerous cell free floating around looking for a target.
  Covid Test. the throat samples ok but up the nose...jeeeez
  Phlebotomy. - haematology/bloods in old money and four blood samples taken, bagged into brown, yellow, red and green sample vials.
  Full body CT scan - Computer tomography with an injection of iodine fed through a cannula to give better image contrast.
  MRI Scan - Magnetic Resonance Imaging on my head and neck. With a radioactive compound fed through a cannula to give better contrast for this type of scan

MRI scans often freak people out. But for me it was great. Like being in a 1950s Sci-fi movie soundtrack and getting loaded into a cryotube for a long space trip.

Then back home. Oncologist will be in touch as and when they need to.

That wasn't a bad day, no anxiety about the tests, not scared of needles or cannulas or the scanners. I'm happy to let those results get analysed. It could still be nothing, but deep down I just know. The NHS does work fast occasionally and 2 days later I was called in for the following morning for another oncology consult. Mmmm now this is serious. If was clear they'd have said.

[Budgie]

Not Much Time to Think

At this point no one at all knows what's been happening. My son knows I'm poorly but like me at first, told him it’s a chest infection that is just being properly checked because of my age. No one knows I've already had 2 consults and rounds of tests. We keep it all in us fellas of a certain generation, but I didn't want the risk of driving back home 30miles if it was the worse news. And I don't cry wolf without good reason. So, time to visit the folks tell them what's been happening, why I haven't been up for over a fortnight and ask if they will come with me and act as taxi and support for the day.

Trying to be as reassuring as possible. I asked them not to tell a soul. Not until I have all the facts laid out and know exactly what's been happening. Plus, I don't take any personal pleasure in sympathy whatsoever. Empathy, that's fine, give me as much as you've got.

I'm also thinking that best to have someone else there who's been through it. Which, the old man had, 2yrs previously It means that he understands what's happening, and he's not daft, far from it, so it's good if he was with me. He was happy to do that and would be able to catch any missed questions or answers. I asked mam to come as well, no-one would have tried stopping her. But I didn't want her in the room for the results, it would have eaten her up, and I needed to keep myself together big time for that hour in the consult. All gets arranged and we head off the next day to the Hospital again.

[Budgie]

Face to Face Confirmation

1st Week of August 2020. It’s my 55th Birthday. I'm not feeling quite as bad as I have been, but still poorly.

Into the oncology consult rooms we go, thankfully they've no issue with two people being there despite Covid restrictions.
There's the Oncologist, a lung specialist, an assistant/trainee oncologist and a Macmillan cancer nurse present. This is serious. We sit down, introductions over and I pipe straight up - Whatever it is, please be straight and direct with me, don't try and gloss over anything or hide any medical terms. And, fortunately, they do just that.

They have discovered :

• early signs of emphysema -clogging of the lungs
  Early signs of pleurisy - fluid build-up in the lining/cavity between ribs and lungs.
  Confirmed that it was a tumour in my lungs. It is a Stage 4, Terminal, Primary Adenocarcinoma. End stage and is unsectionable, i.e., too far gone to safely remove via an operation.
  The back fluid sample shows cancerous cells free-floating around there.
  The cancer has also metastasized - basically spread around my body...
  
  To my adrenaline glands, covered in small lesions
  My right kidney, small lesion
  My lymphatic system - the toll-free, express slipstream highway, filtering system to all your bodily functions. Lymph nodes are everywhere but the main one is dead centre of the thorax pretty much.
  Finally, to my right parental brain lobe small lesion

The official clinical diagnosis being :

Metastatic Right Lung Adenocarcinoma (Brain)
Classification : T4/N1/M1c

T is the Stage of growth, 4==Large.
N is the spread of cancer cells to Lymph nodes status - 1==Positive.
M is the metastisization Status. 1==Metastasized, c==spread remotely to more than one part of the body.

Three little words....FUCK ME STATIC

I was expecting maybe stage 3 cancer in the worst case. This is a whole different ball game.

I am sitting there, poker faced. Head spinning like a centrifuge. A glance over at the old fella and he's turned greyish white. I think I'm the same colour.

[Budgie]

Prognosis and Options

OoooKaaaay lets see what's what. First questions.

• What's the prognosis? - with this type and stages of progress. 3 months max without treatment. 3-6 months With. No guarantees.
  Can it be operated on? - No. Its unsectionable. Meaning it’s too far gone and with it metastasising there's a good chance I would never recover from that.
  What treatments are available? - that's entirely your choice, no treatment just care or palliative chemotherapy.
  What about radiography? - not for the extent of the tumours you have
  Any Targeted treatments? - No, not applicable or really recommended for my cancers.
  Considering what you've told me so far are any Clinical Trials are available? - No.
  Any other alternatives available? (thinking RSO a wee bit here) - No.
  How long will this be going on for? A maximum of 35 cycles, nearly three years absolute maximum. She stated that not one cancer patient she's come across has ever reached that maximum. It’s from the lab experiments on max doses. The toxic/poisonous effects of chemo itself would have probably finished me off before then
  How long will each chemo session take, do I need an overnight bag? - in your case, between 4 and 6 hours and it’s a Day-Care, Outpatients Cancer Clinic. You shouldn't need an overnight bag

The same three not so little words pop into my thoughts again.

Ok I say, It’s not looking very good here. But no option is not an option for me. I'm too much a glass half full optimist so put me down for chemotherapy. When can we get started? The lung specialist leaves the meeting. That's when I take a bit more notice of the Macmillan nurse, she specialises in palliative care and has the most beautifully sparkling, hazel-blue-green mesmerising Afghan eyes....aaaaand back in the room.

The oncologist start asking loads of questions about my health, fitness, diet, lifestyle, medical history etc, which is just the distraction I need. But that's good as it clears my mind of that shitstorm it’s just been through. And I'm totally jovial, smiling and positive with the conversation. Even crack a few nervous jokes but still being completely honest answering everything she asked. A few bits of paper shuffling, checking her diary/schedules and she lays it on the line. I’m starting treatment in 3 weeks. She reminds me that is palliative chemo and not a cure, and finally writes out prescription for me to pick up on the way out.

Because I’m fit for my age, positive and otherwise in good health she recommends a quite aggressive treatment regime.

• I need a Vitamin B injection. Now. I'm going to need it every month during treatment cycles.
  I need some more blood samples. Now. And 3-5 days prior to every chemo session.
  Scans aren't needed this time, but I will require a CT scan 5-7 days before each chemo session.
  She prescribed Dexamethasone - A strong steroid to be taken over 5 days starting 2 days before treatment. It acts as an anti-inflammatory and also toughens you up to stand the chemo for the first few days after infusion.
  Prescribed Folic Acid, yep that one for those ladies who know, as it helps protect the still healthy cells in my body from treatments I'm having.
  I’m going to be on a three-week cycle of 2 chemotherapy and 1 immunotherapy drugs each session.
  I must cease using any anti-inflammatory drugs, aka Ibuprofen immediately. They interfere with the body’s response to the chemo drugs
  She prescribes strong paracetamol as a general pain relief.
  The chemo drugs are Carboplatin and Permexatred, high doses.
  An immunotherapy treatment called Pembrolizumab which trains the body’s immune system to fight the cancer in conjunction with the chemo 'destroying'/ stalling it, fingers crossed.
  The treatment will be here, starting in 3 weeks’ time. This hospital is 30miles from home.
  The oncologist also booked me in for a consult the day prior to treatment just to make sure everything was still ok before getting into it.

I asked if it could be done at my local hospital (6 miles) as opposed to this one. This hospital was a in a country Covid hotspot, messing about organising travel etc. My local hospital was a Covid free one, i.e., no Covid patients admitted, they want it kept for regular care purposes. As luck would have it, they also have a Chemotherapy day centre. The oncologist rebooked everything. I can literally catch a bus at the end of the street and get dropped off outside the local hospital. No brainer, let’s make this as easy as possible.

And that's that. 30 minutes that pulled out all my tailfeathers and then some. Consult over. Appointments all booked including a quick consult the day before treatment in case the scans/bloods threw any wobblers into the mix and off I trudge with the Macmillan nurse for the injections needed. The old fella was despatched to pick up the prescriptions from the hospital pharmacy.

[Budgie]

Help from Palliative Care

Here we are in the palliative care part of the hospital with the Macmillan nurse, she sticks the needle up my bum and Vitamin B done.

She then goes over what her role is. To be there at the end and available 24/7 if I need a chat, or extra care is needed, and to make things as comfortable and pain free as she can for me. I’d been unemployed since e-o-February, no chance of a job in that first lockdown at the time. And when the nurse found this out, she filled out my disability and mobility claim. It only needed 3 little sections completing from about 100. If id strayed into a wrong section or put the wrong wording in it would delay the claim for months, but she knew exactly what was needed, and where.

Even put in my Blue Badge application for disabled, free parking and especially , free access to hospital car parks. I grabbed a load of paperwork off her about the cancers, treatments, care options etc. Gave me the 24/7 Critically Ill emergency number to use whenever something didn't feel right or I take a turn for the worse and that was it.

Time to go home, digest the days overload, and go to bed.

[Budgie]

First Days Aftermath

The next day I was up and about and quite sprightly. I’d got a lot to think about since yesterday afternoon. And had another restless night, still in pain but now I know the full extent of things I'm content for now. Better the devil you know than the devil you don't.

I did have a good cry once the young'un had gone to bed. More so for those who would be really feeling this other than me. Priority being the kids and my mam.

One thing I did decide, pretty much straight away. Is that despite what's happening, in a whirlwind of conflicting emotions, is that I was not really sad for myself. In fact, I've had a good life, better than many, worse than many, been an independent little adventurous hippyish raving-rebel with a conscience. Enjoyed life and am an easy-going dude. Who, when it’s all on the scales, is completely at peace with what's happened and what will happen.

Maybe not what will happen... that's still unknown but it's either a slow decline or I just drop down dead, have a stroke or similar and game over. Especially with things moving to my brain. One growth spurt onto a blood vessel and I’ll be going down. Shimples.

It’s the straight as a die attitude that will hopefully help me through the, let’s call them 'Adventures in life still to come'.

Except for one thing. Whenever I think about the kids or mum and the affect its going to be having on them, however slight, and BANG!!, I'm in bits, holding the tears back, unsuccessfully. They are the ones who I unconditionally love the most and who love me the most. It's my only true regret to this. Even now, typing this bit, reading it back and they're flowing freely.

[Budgie]

Getting My Act Together

Now I had the facts of this Cancer, it is time to find out what it all actually means.

Get things right in my head, tell close family and friends the shituation. They all deserve to hear this first hand, but, it’s at least 30 or so people and is not going to be easy.

Tell the kids and figure out how to ease them through what's to come and beyond.

Reset my targets and goals in life as best I could.

Look into the funeral costs. Contact the pension providers I have. Figure out what my final wishes are. Sort out an executor for when I do pop my clogs. Figure out where the kids will live if the time occurs, especially the 15yr old as he's not going into Social Care at all. Pretty stern and head banging stuff, especially the bureaucratic aspects with the country effectively shut down and most people out of office and stuck indoors. Check in with my GP to update him. Then try and work out a care plan for me when things get really bad. I was in a rush. 12 weeks is not very long if that's all I do get, but a chilled-out rush, not worth any more stressing over crap. Just keep my pecker up , keep an eye on my goals and work through it.

I ring up the folks again that afternoon, its' still only been 24 hours since D-Day but I wanted to check they were ok. And to ask if she would not say a word to the kids until I'd sat down with them. But, let close relatives and a few of her close friends know the score. But ask them to give me space and time to fully come to terms with things. It also means that she'll have all the support that she needs from them.

Then the kids. I called my daughter, who's at Uni in Leeds to come over as soon as she can get away, and outside school hours so that the youngest will be there. Until then I’d keep researching, i.e., wading through the disinformation to sort out and cross check the proper studies ,information, effects etc, Without overloading my head with it all.