Seeing the World

I wasn’t really exposed to cancer as a child.  It seems the disease wiped out a fair few of my relatives but long before I was born.

Even as an adult my involvement with friends or relatives suffering has been minimal.  They get ill, it last some time, they die.  Life moves on for the rest of us.  Occasionally some good news.  A friend gets the all clear.  And you carry on as normal while they, no doubt, share their elation with a fear of the illness returning.

This afternoon I had a nap.  After half and hour the evil pelvic pain hit and sleep wasn’t going to happen.  Sharp, unpleasant and ongoing.  Stand, sit or lie it’s still there.  Very tough to cope with.  And a reminder that I knew nothing about what those who’ve suffered before me went through.  I didn’t ask.  And I was probably relieved they didn’t tell.

The naproxen that has served me well most of the time is not as effective in recent days.  Topping it up with paracetamol pointless.  But I do it anyway.

My instinctive reaction to this afternoon’s pain was to ignore it.  But after five minutes I was chucking down the tramadols and then swigged oral morphine straight from the bottle.  There’s not that much left in the bottle.  Hopefully the GP will act on my online request for a new bottle this week.  Or I’ll be in trouble.

I’m still reluctant to play the slow release morphine pills instead of tramadol.  They wiped me out last time I had them.  And much as I want pain relief I also want to have a period of alertness that last more than eight hours a day.

Being overwhelmed by pain isn’t pleasant.  It doesn’t help you focus on things.  And neither do most of the drugs that relieve the pain.

It’s Chemo Week

At present, I’ve been a week without cancer treatment.  No drugs to fight the nasty sod.  Unless you include the hempseed (cannabis) oil I’ve procured, but that clearly doesn’t make the slightest difference.

My shoulder has been attacked in that time.  My right side (lung?) is strained.  My ever troubled rump hurts more than ever as the cancer presumably grows.  It’s fair to say that the tramadol and amitriptyline have become a cornerstone of my medication.  But I don’t really want to sleep sixteen hours a day like I did yesterday.  But at least I don’t feel pain when I sleep.

This morning I made my early morning walk to pay a visit.  My legs felt like Bambi.  I’m not sure why they should, but handrails and walls came in handy as I visited the facilities.

Today I drive to the dentist, so I’ve not taken the stronger tablets.  Driving should be ok, but there’s a vague disclaimer and I don’t really want to mow down a line of school kids at a bus stop.  So minimal drugs for breakfast.  I can top up when I get home.

The NHS couldn’t find me a dentist that could see me before this week’s series of appointments.  So I need to go private.  Only an extra £11.  They can’t do any work on me at present, despite a huge gap in one of my upper teeth.  But hopefully they can tell me that the big hole caused by a missing filling is clean and safe for zometa and chemotherapy.

And radiotherapy Tuesday followed by chemotherapy Wednesday, after dental Monday, already makes me feel tired.

My usual Saturday routine wrecked me this weekend just gone.  Although there was a key difference.  Oldham actually won – the lucky brother in law and youngest nephew doubtless responsible.  A sweet offset to the usual defeat!

When the Bell Tolls

Today was a visit to Calderdale Hospital’s Macmillan Unit to receive my pre-chemotherapy briefing.

They dispensed some nice drugs.  Folic acid to take daily throughout treatment.  Steroids to take twice a day for three days surrounding each dose of chemotherapy.  And an injection of something where the needle went about two feet into my upper arm for reasons I can’t quite recall.

Nursey Nicola then went on to tell me all the things that can go wrong with chemotherapy.  Probably not a good idea with a patient who has a touch of cynicism towards the benefits of the treatment.  Not helped by oral thrush being high on the list of possible side effects.  At least hair loss isn’t likely.  Phew.

As a cancer patient I have a card that I can flash at hospital reception staff in both Halifax and Huddersfield to get them to do something to my ticket to allow free parking.  While I have wondered why rheumatoid arthritis sufferers don’t get the same perk, I’ll take what’s on offer.

Calderdale Hospital has a nice entrance to its Macmillan building well away from the main hospital entrance.  There is also some disabled parking right outside.  So far so good for a chap like me with restricted mobility.

Then, as we left the hospital, the fun started.  The realisation that to get the free parking Mr or Mrs Disabled have to exit the Macmillan building, walk around the front of the main hospital and then queue at a reception desk to get their ticket scanned, and then walk all the way back to the disabled parking space outside the Macmillan building.

Now, in fairness, not every cancer patient is disabled.  But it does seem like a rather convoluted assault course to me.

Still, it’s a perk of the illness.  I shouldn’t knock it.

New Agony

Every now and then, a new pain comes along.  While my pelvic area has taken a battering, the last fresh area to get attacked was my second rib on my right side.  That pain was severe, lasted for a few days and was, eventually, revealed as a cancer spread in a later scan.

The pain that caused has pretty much gone away.  But the cancer remains, presumably waiting to spread or attack again.

Last night, after a wild evening of debauchery with two ladies (that’s a meal and a drink in my life) I got myself into bed, downed my painkillers and struggled to sleep.

While the pelvic pains were mild, the referred pain to the right ankle wasn’t being managed well by the single amitriptyline.  As I sat up to ponder the possibility of doubling my dose, and making myself doolally for the next day, it struck.

The top of my right shoulder exploded with pain.  No sudden movements caused it.  I can only assume it’s cancer. Kit doesn’t feel muscular.  Very much in the bone.

The tramadols were already maxed.  I reached for the oral morphine and, rather than carefully measuring out a 5ml dose I took a swig from the bottle.  Eventually I got a few hours sleep through to 5am.  My bathroom run.  Quickly followed by more tramadol.

The new pain remains though.  With a series of appointments every day through to Wednesday I’m reluctant to bring the slow release morphine tablets in to replace the tramadols.  But needs must and I suspect this will happen tonight.

Now that I’m no longer taking osimertinib I assume I’m at risk to more of this before chemotherapy.  And then more again once chemotherapy stops.  It isn’t much fun.

Frank Zappa

Today sees a return to Leeds and a visit to my radiotherapist, who I’ve decided to nickname Frank.  I’ve no idea if he’s called Frank, his surname is Murray.  But his job is to zap my cancer to reduce pain so Frank Zappa seems reasonable.

Today’s appointment seems to be consultation and scan.  It seems I then have to head back to Leeds next Tuesday to get zapped.  I’ve not had a letter telling me this, but Oncobabe’s laptop seemed to say so.

While Leeds is a bit of a nuisance to get to, I would welcome something to reduce the pain.  While throwing drugs down my throat has been good at sending me to sleep at 7.30pm for the last two nights, and amitryptolene helped with an afternoon nap yesterday, I’d really quite like to lead a life on minimal drugs for as long as possible.

I accept that sleeping myself gradually towards the end is no bad thing, but I’d like to think I’ve got a few months before that starts.  Haven’t I?

Apparently I’m good to drive to and from Leeds for both appointments.  Radiotherapy can trigger a nerve reaction, so that amitryptolene dose is being held back next Tuesday just in case.

My pain levels are nowhere near as bad as they were pre-diagnosis.  As I limped towards then end of afatinib I lost appetite.  No such impact this time, although I took my last osimertinib drug on Monday.

Apparently somewhere in the world they’re trialling osimertinib with other treatments.  That doesn’t seem to be available to me and I can’t see any results suggesting a success.  Maybe the Matrix trials are in on it.  They’re still my main hope.  While my scan showed the drug failing in places, it was still effective in others.

While I’m accepting of death I’m still not completely resigned to it.

Revisiting The God Question

Twelve months have past since I took up blogging.  What has gone from being a travel blog with a bit of cancer stuff is now more of a cancer blog with a bit of Anglesey.  I feel almost guilty for the lack of travel included these days, but I suppose that’s the reality of the condition.

I’m now sat trying to work out uk travel opportunities to squeeze in between chemotherapy sessions.  Because survival times for stage four lung cancer don’t seem to offer too much hope once the chemo stops.

While I’m disappointed the international travel stopped, and gutted not to have made Australia, I did manage to make 11 trips in 8 months and have find memories of them all.

Yesterday I got a Facebook reminder about planning the Easter Island part of the Chile trip I shared with Chris last July.  That brought so many happy memories flooding back.

While I have a little regret that I’ve not made it to Pompeii and the surrounding area, knowing I’ve seen the beauty of Slovenia and Northern Ireland compensates.  And returning to South West USA for a third trip really was fabulous.

I sometimes forget the destinations I’ve visited.  But Malta, Bratislava, Vienna, Iceland, Slovenia, Northern Ireland, Eindhoven, Amsterdam, Montenegro, New England, Chile, South West USA crammed into such a short time has been exhilarating.

But while my health declines I have to look at my decision to travel and congratulate myself on maximising my good health to see so much.  Ensuring any period of feeling sorry for myself was minimised to ensure I could act while healthy.

While I ticked off a handful of places I wanted to see, there was a random element to my travel too.  Skyscanner prices from UK to Everywhere have helped me to identify the cheapest routes.  I’d certainly never have discovered beautiful Ljublana existed let alone travelled there without Skyscanner telling me it was cheaper to get there than to Dublin.  I found myself in Montenegro’s stunning Bay of Kotor by fluke of cheap pricing rather than knowledge.

While travelling overseas means driving over the Menai Strait these days, I can thank cancer for providing the inspiration to see so much more of the world and giving me time to plan the best way to share my pension with my kids.  It’s a disease that is less kind to others.

Platinum Chemotherapy – Do I Get Cashback With That?

About two decades ago I took out a credit card that has been happily paying me 1% cashback ever since.  A Platinum card.  At the time I just about squeezed past the income requirements thanks to a recent promotion and including an estimated bonus in my income.  It’s now my default card when I’m not chasing airmiles and typically earns me over £100 a year.

When Oncobabe proudly announced I’d be going onto a “Platinum Chemotherapy Treatment Plan” my ears pricked up with excitement.  After a fraction of a second that excitement dropped as I realised she was talking about one of the chemicals in the drugs that they’re going to pump into me.

And, it seems that I will enjoy my radiotherapy zapping on Tuesday and my first round of chemotherapy on Wednesday.  It’s quite tough to take.  I’ve gone from having a long retirement to a low number of years to live to having just months to live.  And despite my fresh buttock pain I actually feel quite good physically, aided again by time in Anglesey.

And right now I’m trying to find gaps in my treatment plans for cancer, deafness, feet etc to get back to Anglesey.  Either solo or with Rachel.  I’m happy in my own company, but happiest with the lady.  But will I have the physical strength to drive to the island.  To lift up the hot tub lid and lower it again when I’m not using it.  Or to do anything at all!

I suppose time will tell.  I’m still keen to enjoy the time I’ve got left.  There are still ways to enjoy it.

Feeling on Edge