Search

Seeing the World

Life has served up a fantastic opportunity to travel

The Biopsy Was OK. I Even Drove Home!

Local anaesthetic.  Some of that gel they put on a pregnant mother to be to aid ultrasound vision of a newborn.  In my case, the second known natural child of Stringer will be born of an orifice somewhere near my neck.

A bit of prodding about with injections and then four tissue samples taken for analysis.  If any show cancer, I’m assuming my chemotherapy won’t restart.  In that case we can train Oncobabe how to do the paperwork to prescribe my new to NHS miracle immunotherapy drug.  We have the document with her instructions.  She seemed unable to find her copy previously, saying its not yet available.  It really is!

If there is no cancer in this sample, chemo will continue.  I’d be amazed if this was the case, but ignoring medical opinion isn’t really an option.  Logically, this option means I live more months.  Not a lot.  But better than nothing.

Right now, with no treatment, I feel dog rough.  Moving is tough.  Thinking is tough.  Doing things I enjoy is tough.  Managing my bodily functions continues to be a challenge.  Maybe the next drug will restore confidence in my own dignity for many of those extra months.  Tough to find that information online.

Meanwhile, despite best intent, I’m struggling to be social.  There’s a good Saturday routine going with Chris that we amended last week.  Even if the season ends, as seems likely, in relegation I want to see the last two games.  One in Oldham, one in Northampton.  Travel for the latter may be a problem.  Travel is tougher than ever.

Too many things are a problem.  This isn’t a state of mind.  It’s my current reality.  I don’t like it.

Advertisements

It’s a Bit of a Struggle

I have a biopsy tomorrow afternoon.  That should take me from low to very low!  At the moment I struggle to get around the house and I missed last night’s football.  Which turns out to be a positive.

I’m in pain.  My mobility is limited hugely.  My appetite is gone.  My ability to judge the good work of the constipation sachets is limited.  A fast move to the gents is completely impossible.  Constipation Roulette is a threat!

True to say I’m not enjoying this bit.  No treatments.  Pain.  Overwhelming discomfort.  This is not something I considered when I decided in December 2016 my future was travel, pain for a few days and then a quick death.

The biopsy results are still a week or two off.  They will decide if drug trials are an option.  Or if the new immunotherapy drug is a treatment.  Or if returning to chemotherapy is actually a good thing.

In the meantime, I’m not very well.  A couple of lunch dates on hold.  An opportunity to see the Scottish Borders welcome, but beyond me.  For now.

I do think I need a treatment and I need it fast though.  This isn’t fun.

Pain is the Curse

I had hoped it was fading away.  The drugs aren’t in use 24/7, but as night time approaches there’s no doubt that the pain levels increase.

My prescribed Tramadol dose is four a day.  The internet says take six.  Sometimes I have.  Often it’s less.  But I pay a price.  Sleeping late being the big one.  The stronger option in my drawer would be even worse to recover from.

But if I’m still awake at 11.30pm I might move up a level tonight.  Regardless of the side effects.  The butt pain isn’t kind, and although it’s not shooting down my right leg, my right ankle feels about two feet in diameter.  A physical check confirms it isn’t.  But the pain has referred.

I’m less creative when it hurts.  Last game of the season in a couple of weeks and I’m struggling to think clearly about it.  It might even be the game that finally relegates Oldham.  Friends are making a weekend of it.  I could drive, but it’s possible I’ll have had biopsy, chemotherapy and radiotherapy the week before.  Another regret that Motability won’t let Chris drive the BMW.

Train?  Possible.  But need to make sure Chris can do it solo if I can’t get there.  Disabled Railcard is usually good for both of us.  This time we’ll have to utilise individual railcards.  Same price.

I’m glad I’ve typed that.  The chances of remembering in the morning are slim.  Coherent thinking and memory recall mixed at best these last few days.

The sooner they get me back on some sort of treatment, the better.

While my Pain Has Eased, It’s Still Very Much There

I still feel like I’ve been kicked by that horse.  But the sharp and pulsing pain is now just an uncomfortable reminder.  Experience tells me that the hours of darkness will reawaken it though.  I’m armed with opiates and water for when it does.

I don’t feel that I can risk travelling any great distances.  Wimbledon away is out of the question.  Whereas I felt like I didn’t want to travel to Oxford a couple of weeks ago, this is different.  Can’t. go rather than can’t be bothered.  They’ve had some good away wins when we’ve not made it this season.

I am really uncomfortable.  Pain is part of it.  Constipation is a big contributor too.  I want to go.  I can’t.  I’m worried that if I do go, my senses won’t tell me until it’s too late.  While untested, I currently sleep on a towel, just in case.

The prescribed sachets should free things up.  History tells me two a day isn’t enough.  Three a day is a six hour stop in the bathroom.  I might try two and a half, but it feels like a dangerous game to play.

I’m meant to be trying to maintain my weight.  But eating stuff when your gut is full isn’t easy.  Portions are small and will remain that way until my body, with help, corrects the problem.

Weekends should be fun.  This one might make smiling tough.

At least the cancer nurses have confirmed that they’ve actioned my radiotherapy request.  I assume that means Oncobabe will on Monday!

24 Hours On – No Radiotherapy Referral

It’s my assumption that radiotherapy should be the next step for the unpleasant pain I’ve continued to experience through another night.

I know it’s an expensive treatment.  But it’s worked beautifully for me for a two month period until the pain returned.

While hospital nurses have given pain relief advice, their promises to ask about more significant action against my pain are yet to result in any further communication with me.

Maybe it’s possible that radiotherapy isn’t the way forwards here.  But Oncobabe certainly hinted at the option earlier in the week.  Before my niggle became a scorching pain, beating out agony with every pulse.  I suppose, if I’m to get the immunotherapy drug soon, that might solve things.  But the early removal of this agony cannot come soon enough.  And I need a biopsy before immunotherapy.

A phone call of clarity would be nice.  Even if not from Oncobabe herself.  “You’ve got an appointment to be zapped next week” or “we’re hoping to get an early prescription of the immunotherapy pill which should relieve the pain” would be nice.  Yesterday’s chat about morphine and making my constipation unbearably worse doesn’t really cut it.

But if they don’t want to zap me, they need something better than opioids messing with my waking hours.

I Have Had Bad Days Before

Today has been a write off.  Tramadol has been the drug of choice and, as its encouraged sleep, it has pretty much done the job of reducing pain.  Not that I’ve spent hours comotosed.  Just a couple.

I’m still waiting for the hospital to confirm my request for radiotherapy.  The nursing staff are more comfortable focusing on pain relief and seem to think slow release morphine is the route to take.  Overnight, maybe.  Daytime, no.

The pain is not new.  It’s just frustrating because previous attacks have gone away as drugs have changed.  Spinal surgery helped.  Afatinib was excellent until it failed.  Osimertinib provided relief within days.  As did chemotherapy.  But now I have none of those treatments.  Medication change is a few weeks off.  Even radiotherapy, if prescribed, is probably a couple of weeks off.

My concern is that I now face an extended period of pain and drugs until they agree the next treatment.  That’s quite tough.  The idea of being spaced out when I want to drive isn’t great.  The idea of not driving also makes me unhappy.  But if I’m on this stuff I am pretty much stuck.

Maybe the heat in the tumour will fade before it’s treated .  But that seems unlikely.

Kicked by a Horse

I don’t recall ever being kicked by one of our equine friends.  But this morning I’ve woken up feeling like I have.  Hard.

The butt niggle has evolved through the night.  Firing itself up to make the early morning painful as, presumably, a tumour dances around my pelvis in a most uncomfortable way.

Painkillers due in twenty minutes will bring some relief.  But they’ll  also sedate me a little and add to the curse of constipation.  Regardless, tramadol is very necessary.  I’m not  averse to using up a morphine twelve hour pill instead.  But that will knock me out.

I’m confused as to how I flag this up.  I have three phone numbers to go at.  The chemo ward.  The emergency ward.  The MacMillan nurses mobile number.  Given that my diagnosis is tumour pain and my solution is radiotherapy again I think I need to contact the chemo ward to start the slow process of radiotherapy referral.  In two weeks this pain might go away if the radiotherapy works again.  In the meantime, my drug use is going to increase heavily.

And right now, the pain is pretty high on the scale.

Introducing Audioligibabe

The trip to Bradford Royal infirmary follows a country route to a hospital that is actually far closer to home than Huddersfield.  The promise of free disabled parking was denied due to a full car park.  I pulled up on double yellows outside the sprawling hospital, displayed my blue badge with a hint of arrogance, collected my walking stick and commenced my limp to the nearest hospital building.

What do you know, ENT and Audiology Departments right next to me!  Result!  I present myself to reception and wait.  Then a lady appears and calls my name.  I don’t call her Audiologibabe to her face, but the mental note is made.

She repeats some of the high pitched whistling tests that had brought me here.  Asks me what colour hearing aid I want and tells me about cross-hearing.  A device on each ear.  The bad ear turned on, with sound sent wirelessly across to the device on my good ear in an instant.  They can’t actually make my knackered ear hear.  But they can move the sound to my quite good ear.

I joke about Mrs Richards in Fawlty Towers.  Straight over her head.  She checks dates I’m unavailable and I reel off my medical appointments from memory.  Apparently my devices will turn up in approximately six weeks.

It might not be awe inspiring stereo sound, but I’ll be able to hear you talk when you’re stood on my right.  The days of choosing to ignore noise or twisting my neck at obscenely uncomfortable angles are hopefully drawing to a close.

Scan Results Inconclusive – My Body Is Surprised

I’ve woken up this morning with butt pain where I’ve previously enjoyed the services of a rather unfriendly tumour.

It’s unpleasant.  I’m trying to avoid using opiates because they contribute to constipation and drowsiness.  Inevitably they will be in action tonight.

It’s four weeks since my last chemotherapy and, because this pain was present at the time of having my scan last week I assumed I’d be told chemo is no longer effective.

Not quite.

The scan shows stronger bones, which amazed me as I’ve been feeble as hell since the weekend before they pictured me.  It showed no spread in the primary sites of lung and bone.  My butt thinks otherwise.  There is, however, an area of doubt.  My neck lymph nodes are swollen.  The scan doesn’t reveal cancer but it’s a new area of doubt.

The recommendation is biopsy under local anaesthetic to decide the facts.  If the biopsy is negative, continuing chemo is the plan.  Positive and I have a sample that can be shared with drug trials.  I also got confirmation that the NHS will soon be able to prescribe the hew immunotherapy drug.  Slightly odd, as NICE have already gone live with the instruction to prescribe.  But as chemo has to have ended we will save that argument for another day.  I think Oncobabe and her pharmacy are reading out of date bits of the NICE web site.

Effectively, I’m going to have a two to three week run of no treatment against my tumours, other than painkillers.  Biopsy.  Medical meeting.  Next steps.  That’s quite worrying when you wake up in pain.  But I suppose I’ve carried this butt pain on and off for a couple of years.  Hopefully a bit longer from recurring won’t be too bad.  Maybe, if it worsens, radiotherapy can be used to zap the unwanted visitor.  I’ll need to be pro-active.  I always need to be proactive.

In summary, while doubting some of the scan findings, it’s put me in a batter position.  Chemotherapy and the new immunotherapy drug that I keep forgetting the name of are both options still open.  My guess is the latter will come into play.  And despite the invasive nature of a biopsy, that gives the Matrix Trials something to work with which could mean treatment alternatives once I’ve exhausted the NHS options.  And who knows what else could yet become NHS mainstream.

It’s all about adding extra months.  Despite uncertainty and an invasive procedure to come, I feel more positive despite the butt pain that starts my day.

A day that sees me head to Bradford for a chat about options for my deaf ear.  Free car parking for my blue badge the highlight, and a medical rarity, of my third NHS day out this week.  That little wave of positivity is helping to mask the tiredness caused by lung cancer and ongoing medical appointments.

Blog at WordPress.com.

Up ↑