Seeing the World

Life has served up a fantastic opportunity to travel

Infection! An Easy Way to End it All

One of the great enemies of chemotherapy, and other anti-cancer drugs such as osimertinib, is infection.  Low white blood cell count opens the door to germs getting inside you and spreading rapidly.  Regular readers may recall the risk caused me to cancel my trip Down Under to see The Ashes and is the reason I can no longer fly.

Well the risk just became reality and I’ve had to ring the hospital’s 24/7 emergency cancer number 01422 xxx999.  Despite being a Halifax number, it seems that this is a mobile phone based in ward 12 in Huddersfield.  I’ve already had one visit to the ward to assist with pain relief after the osimertinib failed.

Dialling the emergency helpline on Tuesday morning I feared the worst.  Tales of patients rapidly declining before they got to an antibiotic drip were going through my mind.  A previous call to the helpline had gone unanswered.  This time a nurse responded within seconds.

I described my two big toes to her.  Victims of an ingrowing toenail on each foot, they had been in good nick in recent weeks but had started to hurt again.  They’d each turned a deep red colour.  And the pain was quite stingy.

The nurse asked me if I was shivering, sweating, feeling weak.   No.  Just my toes being a nuisance.  I’ve never been on an anti-biotic drip and some ridiculous part of me was quite looking forward to it.  Then, dream shattered!

“Get in touch with your GP, stress the urgency to be seen today and they should sort you out”.  What?  I’m not quite as far gone as I thought?

A call to GP.  A two hour wait for a triage call back.  I used to struggle with their same day appointment system but it’s been quite effective for me.  Despite the delay in calling me back to assess me I was seen within thirty minutes.  Two minutes later a seven day anti-biotic prescription.  Two days later the sharp stingy pain is starting to recede.

Fingers crossed, this infection isn’t going to finish me off.  “He had terminal cancer, but his ingrowing toenails killed him” wouldn’t have been a glorious end to it all.

The NHS Introduces DIY Oncology

“You’ll need a scan before your next chemotherapy “.  Fair enough.  An image to make a stick or twist decision on continuing with treatment, being referred to drug trials or, bluntly, being left to die.

Thirteen days after that message, encouraged by my sister, I thought I’d better chase up the scan appointment.  It is, after all, only two weeks until they plug me in again and pump me full of poison.

I rang my cancer nurse who answered immediately.  Quiet day at the office!  She spent a couple of minutes playing with her computer, muttered something in cover up language about scans not having to be on the system (I call bullshit) and eventually said she’d chase it up with Oncobabe in the morning.

The morning has now passed.  No update.  The chances of now being able to organise a scan and specialist report before the key meeting of medics that decide my fate is slim apparently.

So where does this leave me?

Treatment deferred, risking nasty things growing inside me?

Have the treatment anyway, even though it might not be working?

Unable to be referred to trials, as there’s no way of identifying where to take a much needed biopsy from.

I need to keep Oncobabe on board to get me onto these drug trials.  But I feel very let down right now.  And those Milton Keynes statistics around lung cancer, chemotherapy and death are niggling away somewhere in my head.

Time for those looking after me to get their elbows and posterias sorted.

The Chilling Milton Keynes Statistic

50.9% of terminal lung cancer sufferers die within thirty days of starting chemotherapy.

The good news is I’ve exceeded thirty days.  Better still, I’m not being treated in Milton Keynes.  What the hell are they doing to their patients there?

I’ve always been very wary of chemotherapy as a terminal patient.  Being pumped full of chemicals to stay alive for a couple of months doesn’t seem like a beneficial trade off.  That said, I’ve actually felt OK and predominantly pain free through my treatment.

More importantly, if I can cling on a bit longer then I might be accepted onto a clinical trial.  Not that such a trial offers any guarantees.  Not that the noble cause of furthering medical research is highu P in my mind.  Survival is what it’s all about and I know the odds remain heavily against me.

Getting to next year will still be an achievement!

The Christmas Present – Trouble Getting My Leg Over

Matt, my eldest inherited offspring, came up with a pretty decent Christmas present. Two course meal plus a spa experience including hot tub access.

After snow scuppered attempt one to use it, I took advantage of an open Monday date at the hotel in Wetherby.

Mistake.  It was Easter Monday.  I had to miss Oldham’s late win over Blackpool to take advantage of my pressie.  Next time check the football fixtures.  And know when the bank holiday is.

Not to worry.  It is what it is and when the confirmation email came back saying “for two” I convinced Rachel to join me.  Not tough, to be honest, free food and relaxation seems a winner.

On arrival (big car park, one disabled parking space) we both eat first.  Small menu, but gammon and chocolate cake with ice cream was a decent precursor to getting the swim shorts on and clambering into the hot tub.

Over to the spa.  “It’s only a booking for one sir”.  “But your confirmation email says two”.  I go through a moment of pondering an early departure.  When she tells me the price for the extra person, food, Prosecco, spa, I tend to accept value for money and, while still irritated, reluctantly hand over the credit card.  Rachel suggests we head to the hot tub as the incessant rain is easing off.

Outside.  We hang up our towel and dressing gown.  No shelter.  The drizzle will leave those soaking as we bathe.  I notice something called a “plunge pool”.  A small water filled area with a 6 degree temperature sign.  I’ve no idea what the health benefits are, but I opt for the hot tub.  38 Celsius is preferable to 6.

Next problem.  How to get in?  The hot tub is wooden and whereas the Anglesey retreat has me stepping down to the warm water, this place required climbing over the wooden wall into the hot tub.  Left leg first.  Not bendy enough.  Right leg first, usually my weaker leg.  Eventually just enough movement to get me in, giving me the stability for the left leg to follow.

We lay there for some time enjoying the warm waters.  A small bird singing in the tree above.  Cold rain falling, but not really affecting the experience.  Until we exited.  Another struggle to get out, but I managed it.  Rain dampened towel and dressing gown.  Steam room, sauna, Prosecco and exit.

Check WhatsApp.  Chris providing a match report.  Losing, drawing, late winner.  Punch the air.  Drive home.  A rare stop at a Shell petrol station.  The loyalty card paying out 25 Avios I’ll never use.  Ah well, Chris should inherit them!

It’s amazing how tired a day of eating and relaxation can make you!

How Often Do I Think About My Cancer?

It’s all consuming.  It’s every few seconds.  There’s the psychologist view that men think about sex every few seconds.  I’m pretty certain that I think about cancer more often.

If it was curable, I suspect it would be more often still!  But even with an inevitable outcome it’s right at the top of my thinking. I’m happy to talk about it and anybody feeling awkward raising the subject with me shouldn’t worry.

But what am I actually thinking?  Thoughts of lying drugged up in a hospice are genuinely rare.  Thoughts of I’ll show the bastard were common when I was travelling, less so now.  Frustrations about hospital appointments are getting more common.  My next chemo requires Friday blood test, Monday Oncobabe and Tuesday a further blood test and chemo itself.  I know I’m not working for a living but that is a frustrating time consuming pattern, especially when eyes, ears and feet demand other medical attention in addition.

Noticing changes, however small, in my body and pain levels is another distraction to getting on with life.  At present the pins and needles in my right leg, that have danced around since October, are disturbing me.  Knackered pelvic bone is the probable cause, eaten by the cancer.  The pins and needles have suddenly progressed from foot to thigh.  Does that mean I have new damage?  Or could the weakened bones be strengthening with the aid of chemo and zometa?

Then the irritating cough.  It feels half hearted.  I assume the cancer growth in the lung itself is to blame.  But it might just be a normal cough.  I’m not sure.  I think it’s my first cough since diagnosis.

Carrying things reminds me of the cancer.  Carry a plate and retain a spare hand is good.  Carry a plate and a mug and I struggle for balance a little.  Hauling myself out of bed in a morning.  Sometimes a challenge.  Getting in and out of the car.  Tough going, especially now that I have better gripping shoes that get stuck under the pedals.

Parking close to the football ground is a reminder.  Friday’s hour long drive to get from ground to main road at Wigan was a constant reminder that I’m affecting friends because of my cancer.  I don’t like to be a nuisance.  They probably don’t see me as a nuisance.  But some of the time I probably am.

Somebody changes pace or direction in front of me.  I can’t stop quickly myself.  It’s a good job I’m not moving fast.  But putting the brakes on somehow feels difficult whereas a year ago I’d have no problems adjusting to the random movements of others.

It’s there.  Affecting me.  Not just physically but high up in my mind.  That’s unlikely to change.

The Disabled Loo Tour Continues

A trip to Wigan for the football.  We left the game wondering when the Oldham players were going to turn up and then spent an hour getting off the retail park adjoining the stadium.  Parking close to the ground seemed a good idea to assist my slow moving legs.  Indeed, we accessed via a side gate and were shown into a lift upto the concourse and our seats.  But the after game delays and the body of a middle aged man required relief after the two hour drive to drop friends off in Rochdale were a problem.

Chris wanted some shampoo, so we headed to Tesco.  I swung left to the disabled loo.  A quick check for others with more severe disabilities and in I went.  Joyous handles to lower myself with.  And the excitement of effective internal workings for the first time in weeks.

Wash the old hands, turn round and check the mirror on the wall opposite the sink.  To discover I could only see the reflection of my knees.  The mirror ran from ground level to three feet up the wall.

Now the assumption that a wheelchair user might use such a facility is a good one.  I have no problem at all with it.  But the chances of me being able to lower myself to a crouched position in front of this mirror, without risking significant pain in hips and pelvis, is ridiculous.

It’s not as if I get excited about looking at myself in the mirror, but a quick glance before returning to public site is never a bad idea.  Yet here I find myself, disabled, to the maximum value state sponsored Personal Independence Payments allow, being unable to utilise a mirror in a Tesco loo because of the ridiculous assumption that it will only be used by wheelchair users or unusually short people.

I am genuinely glad not to need a wheelchair.  Yet.  But those in charge of disabled facilities, be they in supermarkets, football stadia, or anywhere the public roam, need to focus on more than just the wheelchair user.  Disability comes in many forms and only designing services for the wheelchair is just a horrendous exclusion and oversight for millions of others.

Half height mirrors?  Stuff you Tesco.

My Missed Opportunity to Save Myself?

I’m sat in A&E with Chris.  January 2016 from memory.  He’s injured himself playing football for his school earlier in the day.  Eventually he’s seen, prescribed painkillers and I take him home.

I’m sat there in agony too.  I’d played badminton for the first time in 35 years a couple of days earlier.  My left shoulder aches.  I’d been a little over-enthusiastic.  But then a horrendous pain in my right chest area.  Surrounded by medics I say nothing.  Over the next couple of weeks the pain dies away.

If I’d opened my mouth in that hospital at that time, would I have been diagnosed with lung cancer?  Or, as happened three or four months later when I presented to my GP with middle back pain, would I have just been sent away with painkillers?  By the time BUPA referred me for physio for lower back pain in June I was already a dead man  There had already been a short window to save me.  Missed.

Its hard to know what would have happened.  It’s frustrating to know that I missed an opportunity.  But I was so sure that it was just an over-exertion on my part that bothering the busy Saturday evening staff of the NHS didn’t seem good form.  I knew the cause.  I knew it would go away.  Good job I’m not medically trained!

Who knows if the doctors would have spotted it?  Who knows if they’d have acted fast enough to lop a bit of the lung out?  Who knows if I’d have died in surgery?

I can’t honestly say I have massive regrets over my lack of action.  But I suppose there is a lesson that getting your worries across to a doctor are probably a better idea than not bothering.  I should have bothered.  I’m just not 100% sure the outcome would have identified lung cancer quickly enough.  I’ll never know.

Please donate to Roy Castle Lung Cancer Foundation who supplied the attached symptoms chart

What Else Could Possibly Go Wrong? I Know, I’ll Poke Myself in the Eye!

It happened yesterday, as I dressed myself.  Somehow I managed to put my jumper on and inadvertently stuck my finger deep into my Bell’s palsy permanently open right eye.

Surprisingly enough, it hurt.  Then, I forgot to take my eye medication with me to Leeds for the genetics meeting.  Worse still, as my sister transported me home, sat nav, crap road signs and bad judgement from me trying to find an alternative route meant the severe pain in my eye took a long route home.

Finally I was able to empty a large amount of prescribed lacrilube into the eye and the agony settled.  A very grumpy Dave relaxed and the frustrations of my “additional conditions” eased.

But it is amazing at how little the lung cancer can directly affect my mood, yet things like the Bell’s palsy can drive me nuts.  Granted, slow walking is a result of the cancer, but at the moment there’s little pain related to it.  My facial paralysis means there’s always discomfort in the eye.  Poking the bloody thing doesn’t help surprisingly enough.

Yes, the side effects of chemotherapy are feeling harsher.  I’m tired more.  Less interested in the world around.  Have constipation and then medicated reverse constipation.  Feel like the grumpy old man I’m meant to be aged fifty.

But ultimately I am finding everything else that’s wrong with me is currently more infuriating than the cancer itself.  Including self inflicted eye poking.

No doubt that view will change as the tumours progress and the cough worsens.  But my quality of life would feel a lot better if I could just stick to the one major illness.

Bells palsy remains a cruel sideshow.

Will My Cancer Hit the Next Generation

First question.  “How long have I got?” – no direct answer.  Google said six months.  Still going.  Just.

Second thought.  “How can I turn a worthless pension into an inheritance for the kids?” – over £500,000 magicked up out of a paltry dependants benefit on a final salary scheme that I’d never see a penny from.  Credit to George Osborne for that bit of legislation.  The kids will do ok out of losing me.  Don’t rush me guys!

Third question.  “Does this make Chris more likely to get lung cancer?”.  Asked with genuine fear.  Today a partial answer.  Nearly a year and a half on.

Having fagged it over to Leeds to see an NHS genetics expert, I feel better able to understand the risks Chris faces when it comes to lung cancer.    My disease is the result of a genetic mutation.  That doesn’t mean it carries automatically from generation to generation though.  But it seems it can do.  Not that anybody has done much in the way of studying the family relationships of lung cancer.  Which fits.  The biggest killing cancer is the poor relation of cancer research funding.

The other issue is if you know you have a high risk of lung cancer, you can’t ask a surgeon to delungify you without it killing you.  Lopping off breasts or testicles in the name of cancer prevention has some merit if the numbers are high risk.  With lung cancer you have to wait for the bit between disease arriving and spreading for surgical action to be effective.

In other words, for Chris, if you get a cough in your forties see your doctor and let them know what happened to Dad.  Not that I had such a cough myself.  By the time I knew anything the mortal coil was already reeling itself in.

Will my disease be bad news for my son?  Not from the point of view of losing a matchday companion but will it also be the likely cause of eventual demise for Chris?

For the first time, some vague numbers.  There’s a 50/50 chance of Chris being at risk.  The good 50 is his Mum.  But then there’s a 30% chance of the risk of the specific mutant gene being passed on.  30% of fifty means we’re down to 15% now.  Then, the mutant gene has to go live.  Another 30% chance.  The good doctor threw in “the risk is either negligible or under 10%”.  30% of 15% is 4.5%.  Even if Chris has my duff genes for lung cancer there’s a 95% chance he won’t get it.

Granted, these statistics are based on limited research and numbers are probably rounded.  Granted, something else from me might finish him off.  But ultimately I feel slightly relieved.  We’re all going to drop dead one day but it’s nice to know there might be a bit of variety in cause of death.  I just hope he get a few healthy decades more than I’ve managed.

Lung Cancer is the poor relation of cancer research funding. Please support the excellent Roy Castle Lung Cancer Foundation.

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