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Senior Member
Join Date: Jul 2004
Location: london and københavn
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Veteran Member
Join Date: May 2004
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 That is a chunk of flesh they took - any chance they're going to outfit you with some swanky roboribs, so you can be cyburb? |
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Antimatter Man
Join Date: May 2004
Location: that interweb thing
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Asked about rib replacements or upgrades before the surgery.
Nyet. Surgeon said risk of complications/rejection even with plastic/unobtanium. Shoulder blade provides protective coverage at the back, collarbone and L moob/muscle tissue act as cover at front. Feels weird though... where it isn't numb due to nerve damage due to surgery or raygun damage.  Left arm simultaneously numb and in pain along underside. Weird. Nerve damage from surgery pretty quickly apparent, but told nerve damage from rayguns may not manifest for up to a year. All those who believe in telekinesis, raise my hand. |
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Stallion
Join Date: Feb 2006
Location: Milwaukee
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Great news man!
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Antimatter Man
Join Date: May 2004
Location: that interweb thing
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2009-06-11, 01:20
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 Here's how The Telegraph told the story of Dr. F*ckup and his Radiotherapy Capers Daily Mail ledes with a different take on the same story... Note: In both cases, I am "Patient A" When invited to present evidence or even attend the Panel, Dr. Kahsay reportedly emailed them saying "I no longer practice in the UK. Stop Harassing me." The Panel gave him its maximum sanction. He was Struck Off the Medical Register for a minimum period of at least Five Years and is no longer licensed to practice anywhere in the UK or Commonwealth. Asshat. 2011-03-14, 00:36 Quote:
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I decide to take the GF to Paris for Valentine's Day, intending to give her Grandma's vintage diamond ring as a sign of commitment/engagement/etc. Romantic gesture planned ++ But you know what they say about plans... Morning of Day 2 in Paris and I awaken to find my good lung has collapsed.  Cue 3 weeks in hospital in Paris. (that's tragicomic material for another thread).Cut to: Today 2017-06-12 FUCK!! Despite passing 6 years clear in Feb, I've been experiencing escalating pain for years... always assumed it was scar tissue impinging on exposed nerves... as scar tissue from radiotherapy can continue to manifest for 5+ years after treatment, I figured this was a predictable consequence of my past radiotherapy (both the proper and the improperly targeted treatments). A secondary consequence of the radiotherapy scarring is fibrosis which damages lung function. Before any of my treatments I underwent a Lung Function test, and despite being a smoker for 20 years, I blew nearly 100% expected capacity for someone of my age. The Talc Pleurodesis performed on the right lung in Paris limits function slightly, but by far the largest contributors to reduced lung capacity are the original lobectomy (accounting for one left lobe = 20 percent capacity) and the radiotherapy, both properly and improperly targeted (10% maybe?). After treatment I would expect something in the range of 67-75 % capacity. My latest Lung Function test has me between 34 and 40% capacity. Not even 50 years old and I'm listed with COPD and nearly 1/3rd of normal lung capacity.   In the past 6 months, however, the pain has switched from a consistent linear slope to an exponentially increasing curve.  My Palliative Doc has been varying my pain meds: from Opiates like Oxycodone, MST, Severedol, and Methadone, through Cannabinoids like Nabilone, to Neuropathic agents like Gabapentene and Pregabalin, to NMDA receptor specific options like Ketamine (worth its own Thread  )... pretty much constantly increasing my drugs in an attempt to keep up. But despite me being maxed out on a few different drugs, both the underlying pain level and the frequency and severity of breakthrough pain have been increasing. This spike in pain convinced me that something more serious was going on, so we escalated the investigation. After multiple CT scans comparing then and now we moved up the nuclear chain. After my 8th PET scan of the last decade (2 more and I get a free coffee - seriously though... socialised medicine FTW! my out of pocket cost = £ 0 ), a bright lymph node was seen on the right side and generalised brightening was seen in the left lung. First biopsy (on the bright node on the right) came back negative (yay!). Second biopsy in areas of the left lung came back positive...Received 5 cores (longest 10mm). The material comprises mostly chronically inflamed and hyalinised fibrous connective tissue. In one of them there are small glands lined by atypical epithelium. In view of the past history the features support recurrence of the previous primary lung adenocarcinoma. The tumour cells are positive for CK7, TTF-1 and Ki67 (15%)Fuck! So we're back on the Chemo schedule... first treatment with Pemetrexed and Carboplatin (related to Cisplatin as both contain platinum but more advanced in terms of molecular bonds and reportedly fewer side effects) May 15th, then every 3 weeks for four tranches. Then we're likely to see more Radiotherapy... and yes, you can bet we'll be double checking their work in terms of targeting. If there is no 'cured' and we're really only ever looking at periods of remission followed by relapse, then 5 years of remission for every period of treatment (and perhaps the first year with serious fatigue as the main side effect) is not a bad trade off. But if every treatment hacks away at lung capacity by significant amounts (even when perfectly targeted), that very quickly becomes unsustainable. One of the concerns is whether this new Radiotherapy will cause further fibrosis and lead to further degradation of lung function. Could be the area they're targeting is already fully scarred and we won't lose anything else (obviously our preferred choice  ).And that brings us up to date... well not quite. After the first Chemo session, they put me on a regime of steroids to help beef up the immune system, prevent weight loss, etc. One unexpected side effect was a pain spike. For years I'd been getting breakthrough pain that felt like a stiletto coming in through the ribs on my left side or back roughly in line with my scar. Sometimes this was 'enhanced' to feel like it was connected to a car battery. Pain like that will get your attention, and at times it would get me upright in bed or when enhanced would get my jumping out of bed to a full standing position as the jolt ran into the ground diagonally across my body. The day the steroid regime started, I experienced a few stabs of each type, then despite all the meds I was on, I got a jolt that felt like my entire ribcage was dropped into a roaring campfire and repeatedly kicked around in the flames. While this pain was enough to have me doubled over and speechless, the really odd thing about it was that it wasn't a singular jolt... it was continuous... for half an hour. I've experienced pain at every notch of the scale, from wasp stings to broken bones and post-surgical spasms as internal stitches pop. I know what 10 on the pain scale feels like. This wasn't just an 11, it was a continuous half hour at 11. And there was nothing I could do to make it stop. Even if I took Oxynorm/Shortec, it wouldn't kick in for at least half an hour. As noted before, despite being maxed out on several families of pain medication, from Paracetamol to Pregabalin to Longtec, the duration of relief was on a rapidly diminishing curve. No more than 3 hours relief, or sleep, before the pain would ramp up to intolerable - which would tighten the chest and restrict breathing. No fun at all. Quick flashback to a few weeks ago, showing a trip and fall awkwardly in the kitchen, slowly dropping so the final few feet were almost slow motion... then slapping left side of face on the tiles… then bouncing up slightly, then slap, slap, slap… ow, ow, ow … almost like something out of a cartoon. Pain beside the left temple… and blood dripping… as I slowly regain control and get up, i notice my glasses are shattered on the left side, and from either the broken polycarbonate or the slow motion repetitive slapping impact, i’ve got a wee gash at the edge of my eye that looks like a boxing cut. I had already been scheduled to see my GP that day anyway, snd when he sees it he decides it needs two stitches (that's tragicomic material for another thread). Jump ahead two weeks to June 2nd, and I’m due to see the GP so he can take out the two stitches and get some bloods taken in advance of June 5th which is scheduled to be my 2nd tranche of Chemo. Coming out of the shower I’m bending over drying myself and i must have stood up too quickly, because the next thing I know, I feel a hard whack on the end of my nose as I pick myself up from fainting, falling forward, and smacking my face (square on the nose… doesn’t displace to either side like a conventional break, but cartilage contact points ache). Clearly I wasn't cut out to be a boxer... (that's tragicomic material for another thread). Hurrying to get ready I realised I was perhaps a bit too unsteady and breathless to drive safely, so called soon-to-be-sister-in-law/nextdoor-neighbour for a lift. When we arrive at the GPs I get out and after a few steps, collapse. Cue pandemonium. Some samaritan runs over and tries to start CPR. Ambulances are called. Doctors come flying out of the building. I come to and swat away the CPR samaritan.(that's tragicomic material for another thread) Paramedics arrive and, on hearing it's my 'second collapse of the day', check my blood for L-tryptonens(sp?) and hook me up to an EKG. Cue chin stroking as they ponder the results. Enough things concern them that we proceed to Accident & Emergency and I'm admitted to hospital. Obviously the pending Chemo session on Monday is now up in the air, but fortuitously, it's at the same Hospital where I'm now under observation. So it's now a week later, and after initial concern that I might have had a Heart Attack, they're now convinced that it's merely Pulmonary Embolism... blood clots in the lungs. Potentially caused by events since the start of Chemo, but difficult to precisely nail down.(now if that's not tragicomic material for another thread, I've got enough to make my own tartan. ). I'm scheduled for discharge later today, June 13th, and after a brief period of recuperation at home, I'm expecting the rescheduling of Chemo in a few weeks. Never boring, eh? Hmmmm... Mods, I'm afraid its time for a switch back to uppercase 'C' again, please. Thank you.  All those who believe in telekinesis, raise my hand. Last edited by curiousuburb : 2017-06-13 at 05:08. Reason: corrections, links. grammmr/spellllling |
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Dark Cat of the Sith
Join Date: Jun 2007
Location: Rochester, NY
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Buddy. Dude. This is the most horrifying thing I've heard happen to someone I know online. I am so angry that this doctor fucked up! That he did it wrong! And I'm so heartbroken that it's recurring and you've been in so much pain. God.
"A blind, deaf, comatose, lobotomy patient could feel my anger!" - Darth Baras twitter ; amateur photographer ; fanfiction writer ; roleplayer and worldbuilder |
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Antimatter Man
Join Date: May 2004
Location: that interweb thing
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Oh, and the lawsuit still isn't sorted... even though Defendant has admitted primary liability.
I've been to a series of Experts to generate Reports that document my condition (many of which are now out of date due to latest relapse). Of course, all that stuff moves to the back burner while focus now changes to regaining small 'c' status. All those who believe in telekinesis, raise my hand. |
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Rocket Surgeon
Join Date: Feb 2005
Location: The Canadark
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Holy fucking shit, dude. That's some bullshit right there.
It does happen. My wife's aunt had an entire lung removed to get rid of lung cancer. The surgeon took the wrong lung. So they had to go back in and take half of the remaining lung. My wife's uncle (i.e.: her husband) is a lawyer, specializing in...medical malpractice. So, that was not fun for the surgeon. |
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Space Pirate
Join Date: May 2004
Location: Atlanta
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Super. The day I decide to come back over and seriously poke around threads I get this news. Fuckity fuck fuck fuck.
Keep us updated on this fucking tragicomedy. gah ... |
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Veteran Member
Join Date: Jun 2005
Location: State of Flux
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Schizer. Sorry to hear this. Your response to this is a model of methodical, good-natured, ass-whooping, and must be the best way to smack it down again. That's no surprise from you.
Perhaps you are adjusting your diet already but recently I've read and listened to reports/studies of how particular ones (essentially vegetarian (can't recall about dairy)) have in cases shown to be a good thing! Best wishes. |
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Senior Member
Join Date: Feb 2015
Location: UK's most densely packed city. It's not London...
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This is some serious bullshit. You know you are tougher than that fucking cancer, that fucking dr., and that fucking scar tissue.
Kick this thing's ass once and for all curious! |
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9" monochrome
Join Date: May 2004
Location: 🇦🇺
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Oh 'burb - man, this is beyond what anybody should ever have to go through.
You are incredible mate - your strength, composure, and resilience in the face of such malpractice and comitragedic events is amazing. Kick this C mate. You're stronger than it is. Kick it again and again and again. |
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Lord of the Rant.
Formerly turtle2472 Join Date: Mar 2005
Location: Upstate South Carolina
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Keep fighting and fighting. Sorry you have to deal with all of this. It sucks beyond measure to say the least and I'm not even sure of what to say about it. Stay strong is the best I can come up with that is coherent.
Louis L'Amour, “To make democracy work, we must be a nation of participants, not simply observers. One who does not vote has no right to complain.” Visit our archived Minecraft world! | Maybe someday I'll proof read, until then deal with it. |
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*AD SPACE FOR SALE*
Join Date: Apr 2005
Location: Cleveland-ish, OH
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Holy. Fucking. Shit. You my man are legitimately Superman. You are a way stronger person then I, my friend. My God continue to shin on you and your family. I hope for nothing but the absolute best. Please keep us posted the best you can, please.
Die young and save yourself.... @yontsey |
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Antimatter Man
Join Date: May 2004
Location: that interweb thing
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Consultant says that in cases of multiple relapse, Chemo can tend to make the blood 'sticky', which may have been the cause of the clots that put me in hospital most recently. If Chemo = (risk of) clots, then the risk -vs.- reward equation gets totally flipped to the point where the House wins. While some might argue we have limited data points to make conclusions from, given we still have a treatment option that doesn't come with that downside, its a simple case that Chemo is not the kind of odds we want to be playing. So we're back to rayguns. I've already had the initial Radiotherapy planning scan, from which a treatment plan targeting beam paths and dosage is made. Yes, this is the bit that got fucked up before. Extra scrutiny -from all parties- will be applied here. In fact, speaking with the nurses and recounting the tale of 'how I got here', many of these same nurses were on staff at the time and worked with Kahsay. One recalls him saying, "I might not be here tomorrow", and, as predicted, he was gone thereafter. Otherwise, none of them knew the details of what had happened, the consequences for patients, or the severity of sanction he received from the GMC authorities. I was able to show them the newspaper website stories linked above... cue much tutting and expressions of shock, particularly upon reading his 'stop harassing me' response. When I told my Oncologist we'd obviously be double-checking the Radiotherapy plan, he said "just so you know... after the review of your case, all Radiotherapy plans are now overseen by a panel of Consultants and Senior Staff on Wednesday mornings. This is now standard practice for this Hospital, the Health Trust, and there are currently recommendations with the Minister of Health which, if approved, will make this oversight review standard policy UK-wide." I joked that I don't expect them to name the new policy after me  , but if, as a result of what happened to me, a positive change is made that helps others by preventing the same mistake from occurring again, then we really have managed to make some lemonade from the lemons I got. They'd said to expect the XRT planning appointment in 3 to 4 weeks... actual appointment was the following Thursday  Review appointment following Tuesday. All those who believe in telekinesis, raise my hand. Last edited by curiousuburb : 2017-06-29 at 08:46. |
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Space Pirate
Join Date: May 2004
Location: Atlanta
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Thanks for the update 'Burb.
We're counting on excellent lemonade. ... |
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Lord of the Rant.
Formerly turtle2472 Join Date: Mar 2005
Location: Upstate South Carolina
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Thanks for the update. My family will pray for you and effective treatment. Do keep us posted.
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9" monochrome
Join Date: May 2004
Location: 🇦🇺
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Thinking of you 'burb - positive thoughts, prayers, strong vibes all being sent your way.
Thanks for keeping us informed. |
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Veteran Member
Join Date: May 2004
Location: Promise Land of Trustafarians
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Best of luck.
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Antimatter Man
Join Date: May 2004
Location: that interweb thing
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So the Review appointment was sooner than expected...
but the news wasn't what we expected Oncologist says "upon reviewing the planning scan, it appears the Cancer is now munching into this rib down here... while it is still lung cancer and hasn't metastised into leukemia or something else, it's clearly attacking the surface of the bone. This is substantially more aggressive than we thought, as it didn't even show up on the scan from 6 weeks ago. This has forced us to change our thinking... We're no longer attempting to treat the usual 4 week plan with curative intent like last time.  Our new 2 week plan (which finishes Monday the 31st) will expand to cover this new area, but our intent is "Palliative Only" from now on. Our focus now needs to be on "quality of life*"
All those who believe in telekinesis, raise my hand. |
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*AD SPACE FOR SALE*
Join Date: Apr 2005
Location: Cleveland-ish, OH
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 Fuck cancer. I'm still praying for you buddy. I hope the best for you and for your family. Your attitude is amazingly positive and I hope you can keep that up. You better keep us updated! Die young and save yourself.... @yontsey |
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Dark Cat of the Sith
Join Date: Jun 2007
Location: Rochester, NY
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Wow, that's quite some news.
I'm really bummed out to hear this. How are they defining palliative and quality of life? Drugs to ease pain fro it? |
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Space Pirate
Join Date: May 2004
Location: Atlanta
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Oh 'Burb.
... ... ... ... |
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9" monochrome
Join Date: May 2004
Location: 🇦🇺
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'Burb - oh man...
I am in awe at the way you have handled this. That damn quack... f him.  My thoughts and prayers are with you mate. |
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Ice Arrow Sniper
 Join Date: Apr 2005
Location: Great Bay Temple
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Sorry to hear this, Burb.
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Senior Member
Join Date: Feb 2015
Location: UK's most densely packed city. It's not London...
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Environmental Bloodhound
Join Date: Jan 2005
Location: Land of ice and snow
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Damn it man.
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Lord of the Rant.
Formerly turtle2472 Join Date: Mar 2005
Location: Upstate South Carolina
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My family is praying for you. Keep the positive attitude and do what can be done. Cancer does suck.
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skates=grafs
Join Date: May 2005
Location: New York
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Sorry to hear Burb
You've handled this all magnificently. And remember, palliative care does not mean they are done treating you. |
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¡Damned!
Join Date: May 2004
Location: Purgatory
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Shit 'burb. Shit.
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