A Whole Year.

I see that WordPress now offers a ‘writing helper’.  I feel as though I could make use of that.  It has been so long since I recorded anything significant on here that I’ve forgotten how to start.

When P began his nuclear therapy last September, we felt paradoxically safe.  The consultant told us there would be no diagnostic scans, indeed no attempts at all, to assess P’s disease progress until all four radioactive rounds were done.  This gave us a false sense of security, of course; once his body got used to the invasive radioactivity, P began to put on weight and feel more like he had a couple of years ago.  And no-one could interrupt and tell us any different.

Now that time is up.  A few weeks ago P underwent two days of scans to find out whether the PRRT has shrunk or stabilised his tumours, or maybe had no effect at all.  We weren’t worried, because he felt so well.  We arrived on time, to find a long clinic delay, and by it came to our turn, the consultant had for various reasons left the building.  We had to have the highly complex results interpreted by the Specialist Nurse.  How I feel about the role of the Specialist Nurse would require a whole other blog.   This one was clearly out of her depth, and there was some blue touch-paper and some lighting.  P stood well back, not wanting to be singed.   Anyway, the upshot would appear to be that the tumours have remained stable, but that the cancer has spread to his bones – his pelvis, ribs and spine, to be precise.  What this means is not clear to us until we see an actual consultant.  This will happen in late September.  P had had pain in his back, and this turns out to be the first sign of bone spread.  He was very upset for about ten minutes, then it was back to his usual setting – cheerful optimism tinged with denial.  And who could take that away from him?

 

Now you see me, now you don’t.

I have been reading more.

I have been obsessing over a software problem.

I have been a full time mother again briefly.

I have been back and forth quite literally to various hospitals.

I lost my former father in law two weeks before my forrmer M-in-L hit 90.

I have no time for further updates due to aforementioned software obsession.

 

Beautiful plumage, shame about the carnage.

Last weekend we were woken by six crows fighting our resident wood pigeons for a bed behind the soffit board.  They were huge so close to – I watched the pitched battle from the bedroom window.  The noise was incredible and the struggle went on for hours, with cascades of moss and bird bedding rolling down the shed roof.  The pigeons were surprisingly good at self-defence. When I went in later that evening it was peaceful, and next morning the wood pigeons were back in their third floor bed, cooing to one another.

Then getting changed yesterday afternoon I caught a movement from the corner of my eye.  Down at the bottom of the garden, under the trees, was a female sparrow hawk.  We keep the binoculars handy for twitching, and I was almost sorry I took a look; it was ripping apart a bird and eating strips of bloody flesh.  After a few moments, I realised it was a wood pigeon.  When I looked round the gardens I spotted a lone pigeon on the neighbour’s tree.  There was no-one in the third floor nest.

It was quite something to see, with its powerful claws and huge curved beak, eyes scanning the skyline for threats.  And I know it’s all part of life, food chain, natural predators and all that, but it made me quite sad.   It was very quiet outside this morning.

The Thin Man

Supersize vs Superskinny

Series 4. Episode 1/8

New series. Louise Hayes, who usually eats meals consisting of five or six courses, trades daily diets with Josh Evans, whose own menu is severely lacking. She also receives a message from a 41-stone Texan who is so obese she has had to move into a care home, and visits America to discover the consequences of maintaining her unhealthy relationship with food. Christian Jessen, Ursula Philpot and Helena Fox also hear from people with anorexia and bulimia.

It’s very odd indeed to see your son’s name in the TV guide.  Quite how we will sit and watch this I am not yet sure.  For two years my youngest son lived with his cousin, and they had a good old time of it. Whilst living in the flat, and without telling us his plan, Josh applied for this show and they accepted him straight away – such is his body type (and lifestyle ) that he makes perfect exploitation material for a reality tv programme.

He asked us to participate, as the tv crew wanted some context, but it was filmed the day P began his cancer treatment, so we were able to demur without guilt.  I know they have filmed some screen time with his cousin, and with his girlfriend of the time, and Josh has reassured us that he wouldn’t let them paint him as a starved mis-treated child from a broken home.  We can only watch between our fingers and hope he pulled it off.  Anyway, he had a great time making the programme, coming back with plenty of stories of his five days in a house with the FP (he was the TP – work it out for yourself).  One of his highlights was meeting a man whose name really is Garfield Carrot.   He put on weight, but the truth is that he is back down to around 8 and a half stone, and he’s six foot three.   He loves sushi, Subway, fried chicken and bananas.  He just doesn’t bother eating any of them very often.  And you can count every one of his ribs.

But his mother loves him.

Junkie

This is what happens when you get cancer.  We’ve so many drugs I’m running out of places to stash them safely.  I’ve just been going through them, sorting out what P will need for his third round of treatment next week.   You don’t realise how much it takes to keep life on an even keel.  P will be in hospital for three days, and no visitors are allowed because he will be radioactive.  Once he’s released, he can’t visit the barber or dentist, or fly abroad.     He can have sex, but not get his hair cut.     We’re getting used to this particular treatment now, and in a strange way it’s comforting; no other  significant tests or diagnostics can be done till all four sessions are over, and that takes us into the summer.  In theory, no-one can give us any really bad news.  And anyway,  what are they going to say?  You’ve got cancer?  In a way, we’ve had the hardest news.  It can still be terrifying though.  Last week after routine iron tests, a very nice but very inexperienced young receptionist at the doctors told me his haemoglobin result was 4.9.  Since this would mean he is actually dead, I gently pointed out that there was another column he might check, and all came out well at 13.9.

The ambiguity is tough.  P looks great, he’s put a stone on, his hair has thickened up and he has more energy than he has for a long time.  I  see people looking at him and I know they wonder if we exaggerated.  One woman actually said to me ‘if he’s lived this long he must be ok’.  Sadly, neuroendocrine cancer doesn’t work this way.  It  grows slowly; like ivy, it sleeps, then creeps, then leaps.  P’s cancer probably began in his stomach, which almost certainly means that at some point it will either have to be re-sected, or removed.  The tumours in his liver will become more numerous, till eventually they join up and threaten its function.  It may spread to his bones, or lungs, or both.  He is seven years older than me, and I have to remind myself sometimes that I won’t be growing old with my husband in the way I had hoped.  I joke that a third husband is out of the question.  I really hope it is.

Man Down.

We’ve had a tough week, but P is picking up again, so we grasped optimistically at cheering signs and did some fun things.  The drugs make him into a slightly different husband, but I’ve got form for swapping men so that’s ok.  Our joy was shortlived though.  Making ready for bed last night, P fed the cats some late night Whiskas to hold them till morning and,  as is customary with four boys, one of them promptly brought it back under the desk.  Or so I thought.  What I thought was meat was, on closer inspection, blood.  I traced it to Lamarr, who was sat oddly on the carpet by the window, scrabbling at his face with both paws.  In moments it seemed like there was blood everywhere.   P’s job can be hazardous in the sharp bits department and I thought he must have swallowed a bit of sprue from the floor, so we grabbed him together to inspect.  Burmese cats are very amenable and he let us search his mouth, which looked ok.

By this time, it was 1am.  We watched him anxiously for a while  for clues.  More and more agitated, he pulled at his mouth in utter distress until I could stand it no more and we called the vet.  We can usually count on a quick response, but it took thirty minutes to get an answer from a very reluctant woman who said ‘it’s a tooth.  He’s twelve, it’s come loose and he’s swallowed it.  Don’t call me again at 4am.  Leave him to settle, he’ll relax and get over it’.

And in truth, he lay down in relative peace.  We went to bed at 2.30am, having decided to take him in for a check up in the morning.

Which we did.  He was lethargic in the extreme, and whilst this isn’t unusual in Lamarr, it was all wrong.   So we loaded him in the car and in half an hour we had our diagnosis.    He had been electrocuted.  ‘Does he chew cables?’ she asked.   Yes, all the time, but we thought we had him licked.  But we checked, and sure enough, behind the settee in the dining room, multiple sites, right down to the copper.  He’s defied every deterrent we could think of.

The only good thing we can say is that he didn’t lose consciousness.  He was admitted straight away and the vet will not say whether he will make it.  His lungs are damaged and his mouth and tongue are horribly ulcerated.   I’m sitting here thinking about him down there alone.  We hope with all our hearts that he will live and come home to us.  And in the meantime, we are going to hollow out the floor and hide every cable we can find.   Trunking is not enough.

Tough day

We are half way through the PRRT treatment and waiting for the next lot which will take place in a week or two.   It has an excellent track record and most people experience some shrinkage of tumour, or at least a (temporary) arrest in growth.

The cruel part for me is not the illness but the good health.  P has been well for some weeks – better than before the treatment started, putting on weight, more energetic and a better colour.  My daughter quietly pointed out how ambiguous this is.  He has  seriously invasive tumours, and the cancer in his stomach alone  is enough to kill him, yet his appearance and demeanour are completely at odds with these facts.  People often ask me about his prognosis and I don’t know what to tell them.  Sometimes it’s almost as though they wouldn’t believe me anyway.

If they saw him today though, they would know.  Every now and then he turns completely white, develops a terrible headache and vomiting, and looks every inch the stereotypical cancer sufferer.  It makes me so sad to see him this way.  I know he doesn’t sit dwelling on the future, and he never lets it interfere in his life any more than it needs to.   The other night my dad rang me and said  ‘I just wanted you to know that if I get any worse, I’m going to call an ambulance and I want you to look after the dogs’.   He has  COPD and  mum was out.  ‘Have you used your inhaler?’ I asked.  No.   He hadn’t.  It was in a drawer in the bedroom.  He was quite prepared to use the last resort before he had even considered the first.  In the end he had a toot on his prescribed medication and he was fine.   I wonder how he would behave if he had cancer and not mild emphysema.   P has been selfless in his illness, and I don’t know many people like him.     I hope he gets back to his new old self very soon.

No time to lose

I’m already deciding what I might read over the Christmas hols.  For some reason, whatever I read at that time of year stays with me in a different way.  I have lovely memories of the Christmas I read Steph Penney’s  The Tenderness of Wolves, even though my husband and I were in bed ill with a virus.  Then there was the year I read Bob Dylan’s autobiography lying on the couch in the dining room, while P made me tea and strung up the fairy lights.   Last year when I finished work for the break, I read Angela Carter’s Nights at the Circus, which seemed to match the season perfectly, with its magic element and scenes of snow and rescue. Just seeing the cover brings it all back for me now.

At the current rate, I will still be reading Anthony Burgess’s  Earthly Powers, a book I read at twenty and couldn’t really take in.  It’s a consuming read and right now  it’s hard to imagine reading anyone else’s work afterward, but I have a hefty pile to look forward to; The Finkler Question, which was a very thoughtful and much appreciated gift from a friend, Jonathan Franzen’s Freedom (my husband said it took him nine years to write it, why should you have to wait another year for the paperback?) and an extended pile of other Burgess books which might well see me into 2012.  Also Philip Roth’s The Plot Against America and Oblivion – some very fine short stories by David Foster Wallace.  I just need some  festive free time, and the space in my head.  No guarantees about either one though.

The Human Condition

Someone left a scribbled list of ailments to bring up with the doctor on the receptionist’s counter, and it was bundled in with a pile of P’s prescriptions.  It made me quite sad, and seemed to sum up the mood of the surgery:

Bowels

Pain in r/h side

stabbing pains in chest from back to front.

And then as an afterthought in pencil:

Shrivelled fingers.

Pancreatica

It takes a while  for new information to filter through my mind before I can pass it on, but I’m conscious that I can’t come on here and invite readers to read about our experience, and then not update it when there is news.

We saw the surgical oncologist on Thursday and he managed a curious thing. There must be a consultatory knack to being buoyant and upbeat whilst passing on news that could wreak havoc on a number of lives.   He believes the tumour began in the pancreas, and has now spread to the other main abdominal organs, although it is not all ‘active’; this seems to mean that it is not particular aggressive although it reserves the right to do a u-turn at any point and make serious inroads elsewhere in P’s gastric tract.  The current best treatment (I hate that ‘gold standard’ term) is targeted radionuclide receptor therapy – an injection of a substance so radioactive that P must remain sealed in a lead-lined room for the duration of each treatment – about three days at a time, rinse and repeat.  Neuroendocrine tumours attract the substance, and should either be shrunk or at least shut down for a while by it.  Any random cancer cells around the body not picked up by the octreotide scan should also be caught up in the assault.  Is it wrong that I am thinking of Fantastic Voyage?  He should WISH Raquel were involved.

All this can only take place after we have seen another consultant at another hospital, and had more scans to locate and identify.  If this treatment fails – and it often does, or else ceases to be effective – we are looking at some sort of chemo of the more traditional sort.    The Christie Hospital, where we may be sent,  is a place that will strike fear into any respectable Mancunian – I had better learn the route in case.

This is all very reasonable sounding and do-able, but there is an underlying issue with internal bleeding, a side-effect of treatment and something that has been going on all along.  The ultimate treatment – stomach removal – apparently leaves you a ‘gastric cripple’ (lovely medical lingo – the hospital canteen must be a hoot) with permanent diarrhoea, anaemia, weight loss and bile-vomiting.  This is the hard option we have to keep in mind as we progress.  I can’t say it’s been easy lately, waiting to hear results and coping with family and friends who expect us to freak out, a thing we do not do.  We do patient waiting with intermittent intense discussion, and sometimes we check the insurance policies.  And I repeat what we have said before about the NHS; it can seem like queuing must do in Russia, when you are stuffed in a hot corridor on a plastic chair for hours on end, but we have been treated with dignity and respect by people who can’t be kind and helpful enough, and this treatment is very expensive.   God bless Aneurin Bevan.