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Seeing the World

Life has served up a fantastic opportunity to travel

Back to the Eye Clinic

It’s fair to say I feel pretty rough.  The pelvic tumour has continued rumbling in the absence of any direct attack and the painkillers continue to leave me pretty wasted.  That latter feeling creates a cant be bothered approach to life and apathy to medical treatment.

Fortunately my sister is still on it, and got me to my Huddersfield eye appointment today.  This time they managed to dispense the sprays and ointments intended and eye doctor number three got quite excited when I mentioned eighteen months.

It seems that’s the trigger for further options.  Perhaps the weight on the eye to retain vision but reduce dryness.

Apparently I’ve been added to a list for appointment.  It’s never quite smooth with the NHS.  But I left feeling somebody actually gave a flying **** about my eye having been wide open since October 2016.  How quickly this appointment will materialise, who knows.  How quickly they can weight my eye, who knows.  Whether I’ll still have any life left in me, who knows.  I don’t see any desire in the system to prioritise the terminally ill for other treatments.

My sister Helen drives me home.  Briefs me on next Thursday’s cancer meeting which I’m doing solo, highlighting the different treatment options and anticipating and possible obstacles.  She offers to feed me but my body can’t think of anything worse than being fed.  That’ll be the untreated cancer.  Another week before they decide what to do.  I hope I want food at some stage between now and then!

It’s Early. I’m Enjoying the Football. My Leg is Demanding Drugs and Sleep.

i know there’s a solution to this pain.  But I slept for fourteen hours last night.  Seven is my standard.  The sciatic shock down my right side is unpleasant.  But I want to watch the football on telly and follow the Stockport play-off game on Twitter.

If I succumb to the drugs it’ll be lunch time tomorrow before I know the scores.  I seem to find a mind over matter technique to stop the sciatica.  At least for now my leg’s random twitching is the only problem.  And I haven’t drugged myself.

The big challenge now is to allow the mysterious mind over matter technique to beat the cancer.  Long shot.  Hemp seed oil doesn’t seem to be doing the job.  I wonder if it’s in any way possible.  95,000 UK deaths to lung cancer last year suggests not.

A New Day – Same Issues

I wake up in something of a haze.  The amitriptyline is the most likely cause.  Minor rumblings of sciatica down the right leg respond well to the drug.  Cognitive brilliance is pretty much wiped out by it.

Ive no idea how long passes as I drift into and out of sleep.  Thanks to the Bell’s palsy my nose is running.  I nearly knock over a range of drugs and water to reach a tissue.  The Bell’s palsy won’t kill me but it’s been an unhelpful swine while I’ve been facing into bigger things.  I remind myself I need to find a driver for Friday’s eye appointment in Huddersfield.

I lift myself carefully out of bed.  My body core is weak and I’ve strained it with similar manoeuvres in recent days.  But once I’m sat up I start the day with two paracetamol.  I’m reluctant to do daytime opioids.  But if things get bad I will.

I get a message from my stepdaughter checking when I get my biopsy results.  10th May I think.  Roughly 18 months after diagnosis.  Half of those who were diagnosed at the same time as me were dead within four months.  While I don’t feel lucky, I do appreciate being given the chance to live a little more life.  I refuse to become bitter about something I can’t control.

I haven’t eaten many breakfasts recently.  Today a lemon ice lolly is more interesting than the Coco Pops.  I’ve lost more weight which is probably not good for me.  The fruit bowl may supply lunch.  Paul, friend and landlord, will doubtless cook me a half decent tea.

I’m really wobbly when I walk.  This is strange as the last pelvic scan suggested stronger bones.  But I often walk around the house with a walking stick now.  Oncobabe fears me breaking bones.  She’s certainly scared me.  A bit of cancer, fine.  Spending my last few months with broken hips waiting for the cancer to kill me isn’t a prospect that appeals.

The strained back reminds me I should probably rest today.  The problem is I’ve done a lot of resting recently.  I’d prefer to get out, but getting around just tires me.  Building my strength up for Saturday’s  big football match at Northampton is the target.  Lose by nine goals and Oldham are relegated.  Get a result worse than Rochdale and the trap door to League Two also opens.  Don’t get mullered and do as well or badly (or better) as Rochdale and season 22 in League One begins in August.

Back to bed.  I’m still unsure about the daytime drugs.  At least the sciatica is resting, for now.

Pain Relief

I think it’s fair to put my recent lack of posting down to pain relief.  Tramadol or morphine are my current drugs of choice.  Both knock me out, if not physically then certainly mentally.

The idea of posting even a short blog update hasn’t appealed, simply because I’ve been somewhere close to semi-conscious a lot of the time.

It’s coming up to five weeks since I had any treatment that attacked my cancer.  My cancer knows this.  In my pelvic area it’s playing the computer game caterpillar.  Racing around a small matrix at high speed smashing into the outside of the board.  At night it lights up, burning pain felt in the affected area.  Hence the drugs.

The good news is I’m back on the Naproxen to manage this.  The bad news is that’s guaranteed constipation.  I can sit or lie at many angles, but they all eventually hurt. Hauling myself off the bed is tough going and inevitably hurts.  The postman came to deliver a parcel the other day.  I’m deaf and didn’t hear.  The redelivery option is likely to have the same result.  Accessing the local post offices to collect is a nuisance of minimal parking spaces and huge demand for the blue badge.

None of this is fun.  I think it’s a couple of weeks until they attack my cancer again.  I really hope that’s not too late!

Wipeout

It’s been a day of nothing.  Sleep.  Paracetamol.  But I’ve avoided the heavy drugs that saw me through the night.  But I have been wiped out.

This raises interesting questions about tomorrow.  Will my night involve more heavy drug taking?  Will I be fit to drive?  Will a normal Saturday with Chris work?

At present, I’m thinking yes.  But as darkness falls my favourite cancer cells tend to wiggle harder.  While my instinct is to go easy on the drugs various doctors are happy to dish out “take what you need when you need” advice within the confines of the prescription count.

The problem is this can create tiredness.  It makes driving a dubious task and I don’t want to endanger others.  It makes my enjoyment of being alive significantly lower.

It’s fair to say that I won’t know how I am until tomorrow arrives.  And today’s wake up time was four hours later than usual at 11am.  No chance of that breakfast tomorrow with a repeat!

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.

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!

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