Peter Amey's Musings

Funeral arrangements have now been made for the coming week. Please feel free to email david@amey.org.uk if you would like the details.

It is with great sadness that we must inform you that Peter died peacefully around 4pm on the 3rd April 2008.

We wish to thank everyone for their support throughout this trying time.

I’ve always tried to believe that there are more good people about than bad. It’s still nice when you meet one of the good ones. David and Gill were visiting me at the weekend and were going to come in Morris so I could have a morale-boosting look through the ward window. Then I took a call from David saying that the car was not pulling well on faster roads. I could only suggest they called the RAC. Twenty minutes later my nice man arrived, opened up the contact breakers (CBs) a touch. All was well and he escorted them back home. Turns out he has a (proper) mini pickup so"knows about these things".

I rang him to thank him for his excellent service and mentioned that there was a brand new set of CBs in the glove box. Having expressed his regret that he hadn’t known, he is popping to my house, in his own time, to fit them tomorrow. Nice. And no, he didn’t want paying.

Ratchets at least limit the rate of travel; even when they slip, you only lose a bit of ground. Despite trying to maintain a positive diary output I think it is time to be relentlessly “straight". The main pawl has broken I am free to backslide without any retardation.

With my left leg in traction, so that the hip would heal in a straight line, I was resigned to 6 weeks in bed waiting for it all to happen. The physios left me with various foot waggling activities but weirdly these seem to get harder each day. An earlier scan had shown some possible cancer take up in the upper spine so off to radio to try and arrest any further vertabrae collapse: no joy. The problem area is 4 vertabrae about mid way between the waist and neck, these ignored the radio and are interfering with the spinal cord in some way. To be blunt, my legs are paralysed from mid-chest downwards. The traction has also vanished apparently on the basis that “you won’t be walking again so it doesn’t matter if it’s straight (charming)".

In parallel with all this entertainment I have been quietly (and recently rather rapidly) growing a right breast (a “man boob” for followers of the Guardian’s Steve Bell cartoon strips). This is now hard but quite painful. Perhaps I have breast cancer as well

So the whole game has changed; we are no longer pursuing the elusive “cure", and I am not Lance Armstrong! Now it’s all about learning to transfer from bed to wheel chair, finding out about pain control and seeing how much fun I can have for the rest of my life.

Sorry to be so brutal.

Just a quick aside on our “best place to work …” target. How come I exist in cyberspace? Because the Company’s first response to re-admission was to buy me a Vodafone 3g broadband card (just hope they charge us by data volume not connect time!). It makes such a difference being able to interfere with comp.risks, read iNotes etc!

Peter is back in Bath RUH for more scans and tests, and is likely to stay there for the foreseeable future. He will also be receiving more radiotherapy to the hip.

I have used the term “ratchet of progress” to describe minute advances, often after extravagant effort. The last couple of weeks has been, rather sadly, a period of ratchet failure leaving rather a lot of “negative progress".

Some good news first: the pelvis radiotherapy finally started to work as advertised.
Less good is that a second treatment to the mid femur area has left my left leg awfully weak: I can’t lock my left knee and tend to keel over gently to the left when standing. Certainly I can no longer walk even with well-practised support.

All this came to an exciting climax on Tue 29th when I had a follow-up MRI scan at the Cromwell Hospital in London. We booked a taxi for 7am and set the alarm for 5am (two whole hours to get out of bed, ride the stairlift down and be helped to walk to the driveway). Didn’t get anywhere near making it! All was well for the first hour, we even fitted breakfast in. Then it be came horribly apparent that that the walk to the drive just wasn’t going happen. Plan B: the wheelchair (inherited from my mother in law — see Philosophical Interlude). That got me to the taxi but the chair-car transfer was a disaster. I missed the car seat and ended up sitting on the door sill in front of the seat with manifestly too little strength or energy to do anything about it. After deciding that the only way I would ever get into the car was flat on my back on the back seat, the taxi driver swapped sides and put in a magnificent heave put me there. After some wriggling upright we finally set of at 0730.

The Cromwell was excellent as usual. An army of highly-skilled, well-equipped porters moved m effortlessly from place to place.

Still unable to walk we opted for the wheel chair to get from the returned taxi to the house. My house was allegedly built for the builder’s ageing mother. If so, it lacks some rather sensible design features: e.g. there is no external entrance to the house that is free of steps. So, inevitably, I missed one of the steps, missed the chair I was aiming for and ended up on the lounge floor. Some mountaineering up bean bags at least got me into a chair and I was able to start phoning for help. Nothing like a near catastrophe to trigger activity! An avalanche of doctors and nurses appeared. Assessed and forbidden to even attempt “upstairs” a new single, electric hospital bed and zimmer frame appeared. An ambulance crew arrived at 2330 and “put me to bed". A long day. This morning, more nurses appeared and washed me and got me up. They also looked at other useful kit (e.g. wheel chair ramps) which may appear soon.

All this sounds dreadful; however, if the beneficial effects of the femur radiotherapy kick in, as they have with the pelvis, rapid improvement will follow.

P.S. Hint straight from one of my recent medical visitors. If you are responsible for weak person who falls then you may end up dialling 999. You will be asked:"are they hurt?". You must answer “yes” or “I’m not sure". If you say “No” you will be instructed to"Get a friend or neighbour to help you get them up". Charming!

With my son passing the dizzying age of 21, I have added him as a named driver on Morris’s insurance. All very easy with special agreed-value, classic car policy Morris is on. Actually the biggest hurdle is reassuring the company that isn’t a sneaky way of making him the primary driver and getting him insurance on the cheap. They were greatly reassured when I said he would be pretty lucky to ever get to drive it without me in the front passenger seat! To celebrate we went for a drive. I had an enjoyable time watching a member of the Nintendo generation come to terms with a 43 year old mechanical device.

Morris is an excellent starter but a combination of the biting cold day and the length of time it was away having new rear wings fitted proved just too much for the battery. So, a quick lesson in starting handles. A modicum of choke ("what’s choke"); a warning about thumbs; feel for a compression (previously covered in “how to start the lawn mower"); and Morris fired up first pull.

Down the drive with my ritual reminders to modern car drivers: “remember, the brakes don’t work so plan ahead!” and “don’t even think about changing to first gear if we are moving, even a little bit!“. The first is an exaggeration, of course, the brakes work extremely well, it just doesn’t always feel like that when you suddenly take away the over-powered, computer-controlled mega-discs they are used to.

Thereafter a pleasant jaunt through the countryside. It was fun watching David learn. My comment: “there’s a bit a warmth in the engine now, you could ease the choke off a bit” resulted in it being slammed completely off followed by gasping protests of leanness from the engine. David soon learned to listen to and feel what the car was telling him: “I can handle this in 3rd, don’t worry“, “if you’d like second gear that’s fine but there’s no hurry, I’ll be all nicely synchronised in a second“. I loved watching that conversation develop and sat back enjoying the view and that wonderful classic car smell.

Even more delightful was to arrive back home with a chauffeur as excited and fired up as I was.

The weakness and lack of dexterity in my left hand (which was the first symptom of the return of my cancer) had the devastating side-effect that I couldn’t play the sax properly (or more accurately “less improperly") any more. The main problem is the middle finger which I find it very hard to press down on its own — exactly how you play C natural. Struggling with that tends to make my arm shake and I lose control of all the G, A, B and C (the top 3) keys.

So here is my experimental fix. Fettled by the fine Mr Ray Colomb of Corsham.

The silver circular widget is a guitar finger pick. This is soldered, after removal of the pearl finger pad, to the G key and takes my ring finger. The second and index fingers sit on their keys without any extra support; however, they are much easier to keep there with the ring finger properly anchored. For the curious, the slightly smaller pearl is known as the bis key and provides an alternative Bb fingering. Finally, the red Royal Mail rubber band fits over the knuckle of the ring finger and stops it escaping from the guitar finger pick.

It all sort of works. The reduced stress of not continually losing all the keys means I can relax and concentrate on the real problem: C natural and the misbehaving middle finger! I am hoping that if I can play regularly it will provide much-needed physiotherapy in that area.

The title comes from a rather silly chant (rendered nicely in 2/4 march time) that was sometimes useful in my early RAF days when training at Cranwell. It could be deployed when blisters had run out of other blisters to build themselves upon; when rucksack straps had actually worn right through to the shoulder bones; and so on. It contains a kind of mystical belief that sheer bloody-mindedness can keep the body functioning after it has decided to give up. All nonsense of course, there are only very marginal things the mind can do once the body has decided enough is enough.

All this by way of build up to saying that the pain-relief radiotherapy to my hip has turned out to be something of a disappointment. I knew that there might be a period of getting worse before getting better but over 3 weeks after the treatment finished I am still firmly in the getting worse stage and there is no sign of getting better to come. Essentially, in summary, I can’t walk without external help; can’t sit up or roll over in bed and, rather bizarrely, can’t straighten my leg if it’s bent nor bend it if it happens to be straight!

There are some forward paths. I am going to have further treatment soon and everyone knows, for certain, from massive experience, that this will work (mind you, I seem to have undermined rather a lot of medical certainty over the last 18 months).

In the meantime, tentative thoughts of a stair lift have evolved into the actual purchase of one (well two actually — read on). Because our stairs have a 90 deg. bend and a quarter landing, it either requires a custom-built curved track or two standard straight tracks; the latter is much cheaper (even though there are two chairs) than the former. So here we are. Firstly with the bottom chair already for use.

At the bottom, the chair blocks the front door so a nifty remote control can send it back up to the quarter landing where it can nestle out of the way with it’s sibling.

Things can only get better from here surely!

The palliative pain-relief radiotherapy is now complete and I hope will leave me comfortable over Christmas. The techniques are quite interesting. They start with a setting up session on a table very like the radiotherapy machine but lacking the dangerous bits! With this they create a few X-Rays that are compared and matched to the bone scans so that the real radiotherapy machine can be aligned, and realigned, in future sessions. During the set up a little bit of tattooing (another new experience) takes place and lasers in the radiotherapy machine use these tattoos to do the alignment and realignment. Not quite gamma knife levels of precision but neat enough.

So, does it work? Well not yet although the last couple of days have been promising. These kinds of treatment often have a “worse before better” effect because a cancer cell’s first response to the radiotherapy is to swell up, decide they don’t like what is going on and press all the pain buttons at once! That was where I was last Thursday. I even contemplated getting a quote for a stairlift. Things seem much better now so I hope Christmas will be pain free.

Wishing all of you a joyful Christmas and happy New Year.

My nice little car is back! The new rear wings are beautiful: perfect fit and perfect colour match.
Look at this:

In close up, the quality of the paint finish is clear. They have used a two-part cellulose paint. The two-part means that there is a catalyst that sets the paint rather than just air drying by solvent evaporation. I think cellulose paints are generally illegal now but permitted under licence for classic restoration.

Overall, I think the effect is rather nice.

So all I need now is to get well enough to drive it!

Well things can move quickly. Last Tuesday’s consultant’s session produced the suggestion of pain-relief radiotherapy. By Thursday this resulted in a meeting with the radiotherapy consultant. That, in turn, has moved on to actually doing it this week! Pretty slick I think.

So, a busy period follows: I’ll let you know how it goes.

You may recall that I have had both a PET and a bone scan in the last month or so. The former was primarily to help set up the gamma knife tidy up to the head but nevertheless covered the whole body. The latter was from the neck downwards and mainly aimed at trying to shed some light on the, sometimes intense, hip pain I have been feeling. A consultant’s meeting a couple of days back shows that the two scans are consistent with each other and the source of pain.

It seems that the cancer is having a go at the outer side of my left pelvis and the muscles, especially the Psoas that attach there. The Psoas is the “kicking forward” muscle and is heavily involved in walking and pretty much everything else!

Fortunately there is a way forward. It is an area that responds well to “agricultural radiotherapy” (i.e. a nice big blast over a largish area). That will be done as quickly as possible and I’ll be able cut back on the morphine a bit

So more messing about, but “another notch of progress".

The bone scanner wasn’t exactly what I expected. It was like the PET scan in the way it uses a radioactive isotope to mark the areas of greatest skeletal activity but the actual scanner is quite different from what I expected. Unlike the MRI with its claustrophobic tunnel and the CT scanner with its big doughnut, you lie on a large flat glass “camera” (a couple of feet square) with another above you facing down.

It’s not at all scary until you realize that the top camera is moving up and down to keep as close to your body as possible. The very first thing that happens when the scan starts is that the top camera motors purposefully down towards your face which generates a very strong “is it going to stop?” feeling! It does, about 5mm away.

To be fair, I was warned that the camera would move but was unprepared for the vigour of it! I was just hoping the software was backed up by a strategically placed microswitch or two.

(As an aside, didn’t we write some motion control software for some scanner bed 10 years or so ago?).

I’ll get the full diagnosis in the first few days of December. Meanwhile a cunning concoction of pain pills and patches seems to be keeping me mobile (but not cycling!).

In the meantime my friendly local musical instrument repairer is contriving a way of keeping my uncooperative left fingers on the top three keys of the soprano sax. Soft solder and guitar finger picks are involved. Hope it works: playing would be good physiotherapy as well as being good for morale.

Just as I was thinking I’d had them all, I am scheduled for another new scan; this one is a “bone scan". As I understand it it is rather like a PET scan (described elsewhere) but with a different radioactive isotope. The radioactive marker is absorbed by bones rather soft tissue. The idea is to see if we can get a clearer idea of why my left hip has been so painful. Sometimes it’s OK, sometimes not: two laps of two floors at work, with pauses for welcome chats, left me nearly unable to walk

Pleased to see those I still recognize anyway!

Scan news when I have it.

Well not iron obviously (it has to go in an an MRI scanner); and not a mask exactly (you can still see my face). The picture gives a better idea:

From the side you can see the large steel (well not steel, obviously …) spikes that clamp it to the skull.

The biggest design deficiency seems to be the complete impossibility of getting a pair of spectacles on; it can be a long wait (while they plan beam paths etc.) between frame fitting and the actual treatment.

From this you may deduce that I have back to the Cromwell hospital for more Gamma Knife fettling. Monday was spent in their PET scanner. I mentioned this clever radioactive CT scanner before. The Cromwell’s is of course bigger, better, newer and more accurate. It also has the longest tube I have ever seen into which you are fed. As the platform motored in I kept expecting my head to pop out in Paris.

The PET scan was very encouraging. The original motor area tumour, responsible for left arm misbehaviour, shows no signs of activity at all. It’s a dead tumour ……………. (you all know the rest of the lines). The second tumour shows some activity round its periphery, an attempt to grow, so this was factored into the treatment. The one really new, tiny tumour didn’t worry them at all, Gamma Knife would knock that off in en passant. Finally nothing new was found. The treatment was obviously a bit complex because it took a long time (of no reading, no TV) to plan. It also took a long time to deliver: as I was being bolted to the Gamma Knife machine the operator casually announced: “this treatment will last 99 minutes". The treatment table is roughly the size and comfort of an ironing board (this is just a theory; I have never actually tried lying on an ironing board for 99 minutes. After 60 minutes I was desperate to wriggle, scratch, anything but just lie still! All I could do was waggle my toes at the CCTV camera. Then, suddenly it was over. The frame was removed - much worse than having it put on - the good professor appeared to have cross-threaded one of the spikes and it required more vigour than I enjoyed to remove it. Then back to my room for one night (roughly Virgin Upper Class but without the massage) and back home on Wednesday.

Thursday was taken up filling in one of the worst-designed forms I have ever seen; this was made much easier by a local expert at an “Independent Living Centre” doing most of the work. This checks whether I qualify for Disability Living Allowance or not. Now this has no financial implications, I am too fabulously rich (obviously), to qualify for any state benefit; however, if I do qualify then my hard-working wife can become my official carer and have her pension “stamps” paid. I might add that nobody suggested any of this or helped in way. We have got this far from a chance leaflet acquisition at the local doctors’ surgery.

And finally, Friday. The neurologist consultant’s session at hospital to discuss brain pills. Exec Summary: carry on doing what we are currently doing but cut the blood tests to fortnightly to give the poor old veins some recovery time.

Busy week for someone who isn’t doing anything!

It’s very strange and rather unpleasant experience to see your favourite car disppearing up the driveway on an “A Frame” (a minimalist trailer) behind a Transit van. Fortunately this doesn’t mean permanent separation. I have taken the opportunity of not being an active driver to have two new rear mudguards (I think they call them “wings” now, or even more improbably “fenders"). Morris’s rear wings are the only places that show any signs of “moth” at all and new ones will really make it “as new". Like all sensible designs they are, of course, bolt on.

Some progress here. I would have been going back to the Cromwell next week for more high-precision brain zapping; however, the consultant is now ill himself, in America. (Physician heal thyself etc.). We have replanned and what should be last gamma knife treatment is all scheduled and sorted. To back all this up I finally seem to be getting some stability to the blood level of the Phenytoin drug I keep going on about. The last 5 weeks’ readings were 39, 44, 46, 42, 44 - all but the first in the therapeutic range - this is important because I have never suffered “random arm waving” when this drug level has been right.

I have concentrated on the head because my most recent lung consultation suggests that the FOLFOX chemo has done what it is supposed to do and, while I remain symptom free (e.g. no shortness of breath) , everything is best left alone. Not only am I symptom free, I have never had any symptoms - weird. If symptoms do crop up, there is one more, fiercer, chemo treatment in reserve.

I think this waiting and getting on with things is what they mean by “remission". So I now have another mindshift to make, from focusing everything on helping the treatment to regaining strength and doing useful things with the remission period (and we are talking years here!) . Step one: rode my bike to the local shop and bought the newspapers. Perhaps half a mile, some of which seemed rather more uphill than I remembered it!

So, with the lung stable the head and especially left hand dexterity become top priority. Things are getting better here. The crucial sax requirement is to get the left middle finger moving independently from the index and ring fingers; I need this for C natural. In a desperate attempt to play something I have dug out an old trombone which (I think) I bought in a second hand shop in Germany about 30 years ago. At least my left hand only has to hold this up; mind you, for the sanity of listeners it may be better if I get my sax fingers back rather than inflict a beginner’s trombone tone on them!

Tuesday was a very strange day. I was booked into the Cromwell Hospital in London for another fine-resolution MRI scan and consultant’s follow up. What made the day strange was the the range of feelings and emotions it covered: from dull through to despairing and back to positiveness.

The dull was largely traffic induced. We use a taxi to get to the Cromwell because it is cheaper than the train (for two of us) and because there is no parking at the hospital. Well I was certainly glad someone else was driving: solid from Swindon to the Cromwell! What is it about drivers in this country? A mere inch of rain and they start bouncing off each other like billiard balls. Coming home was equally dull with the M4 closed in at least two places. Perhaps the drive set my mood for what followed.

The MRI scan was much as usual: loud and a tad claustrophobic. Then the wait for the results:

1. The RHS tumour (the one that affects the left hand etc.) has continued to shrink. Good.

2. The smaller LHS tumour is unchanged but shows some sign of being “dead". OK……?……

ok so far, but there is new, very small blighter near the outer surface of the brain, on the upper RHS (away from critical areas). It is not possible to say whether it really is new or whether it is growth of one that was too small to see before. This is where the downright despairing kicked in; just when are these things going to stop? Bu**er!

Then confidence slowly returned. The consultant was very positive. He will do a PET scan (see “radioactive man” elsewhere in this thread) which should reveal any more lurkers and which will show whether the 2nd tumour is active or not. Then it’s the magic Gamma knife again. The new one is small enough to be given a right royal roasting and both it and the may-or-may-not-be-dead LHS one can be treated at the same time if necessary.

During the long battle through Richmond and Twickenham, trying to find a functioning road out of London, I started to realize that I was more annoyed by having to switch back from “recovery mode” to “treatment mode". Clearly silly: at least we know, at least there is a treatment; why worry?

Apart from that, hip pain comes and goes without pattern (although umpteen hours sitting in traffic jams doesn’t help) and the Phenytoin continues to wobble around just in the therapeutic range.

It may sound weird but I think this post is mostly good news!

A bit more progress. The elusive Phenytoin level has gone up again, 46 now; this another “straight line” growth towards the 50ish level we are aiming at. I hate to say it but it it is only since I have been plotting the numbers and driving the process that some stability has been achieved.

The hip pain remains more confusing. On Tuesday 2nd I could scarcely stand but on Wednesday (and since) I was fully up for a hard physio session. Wierd. It does seem to depend how I sleep. Reading between the lines of all my consultant’s reports it appears that the hip pain may just be another wee mestasesis in the bone. The scan will reveal all. In the worst case it is an easily accessible area for radiotherapy. Not worrying for now!