Dear everybody,
Thanks for so many complimentary responses to previous progress report! I'm afraid this one doesn't contain so much that is entertaining but hopefully it will not all be boring to everybody. It's not a brief email and isn't intended for a quick read from a work mailbox... For those who need/want this, in a nutshell here I am still OK after 4th but now not necessarily final chemo. And still able to climb mountains - well the 948 ft to Carr Head Rocks from my house anyway.
Doc at hospital for Thursday apptment was the stand-in one again. She is 6 months pregnant and today seemed to be looking after the patients for 2 if not 3 doctors who weren't there and was 1.5 hrs behind schedule by the time I saw her. She's a lovely lass who looked tired and badly in need of her lunch break. How can you have meaningful equal opportunities if a 6-month pregnant employee is called on to do more than one person's work, doesn't have a proper rest scheduled in the middle of the day and thus I believe is seriously putting her health at risk? A fit person like she is can work fine, as she wants to, right through to dropping the baby, but only if a pregnant-friendly regime is strictly implemented.
So ... I felt I didn't want to engage her in a long conversation. Appointments are in any case only 10-min slots which does seem v. short when major decisions are being made and when all the talk is of patient participation in decision-making. She said that as I was keeping so fit the consultant was now thinking in terms of 6 rather than just 4 chemos. I will have a CT scan before the scheduled chemo 5 but the results of this won't be communicated until the next doc's appointment in 3 weeks, i.e. the day before chemo 5 due.
I have been having reservations about more chemo. On this round, I've been contending with some bouts of deep, deep weariness which is of a different kind from normal tiredness or exhaustion - it's something that I feel like I have to actively fight because if/when I give in is when I'll sink. The depth of this weariness has made me question whether I could/should have more than 4 chemos - but it's hard to know on what basis a decision like this can be rationally made. The mother of a friend in the village who was also on taxol chemo died last week after an infection mid-cycle turned to pneumonia - she had been v. fit pre-chemo and in friend's words "It was the chemo which killed her, not the cancer".
When at the village shops before setting off for the chemo I bumped into a friend with liver cancer, diagnosed as terminal - he has to spend 48 hours as an inpatient on a drip every three weeks and so far has had 12 sessions with another 7 planned - in the daycare suite the 5 hour CarboTaxol treatment I'm getting is the longest chemo session they handle and 6 is normally the maximum number of sessions. So, what I see of chemotherapy is only a part of the picture - the literally thousands of hours which he is enduring are truly gruelling, and inevitably he wonders if this time on chemo is the best quality of life he will ever get again, how much more of it can he bear going through.
These thoughts were at the forefront of my mind when I approached chemo 4 on Friday. To find the staff in the chemo day suite were mostly unfamiliar faces, much more harrassed than at previous visits, nobody taking specific ownership of individual patients, nurses who came round to do routine checks not knowing who was on what chemo, how long their drip should be taking to run etc. After about 20 mins it was clear to me that the Taxol bag was dripping much too slowly to complete within the scheduled 3 hours for that part of the treatment. I flagged to the nurse who was in the room setting somebody up on a short drip that I'd like it checked and she said she'd be right back. An hour later nobody had come to adjust it and when I finally managed to collar a nurse she turned it up much higher than I'd ever had it before to compensate for how slowly it had been running, and defensive hackles arose when I said something like "Please don't go mad with it!"
In another part of the suite, what was going on by this time was that one patient had had a fairly catastropic reaction to chemo, resulting in lots of dashing around and a complete neglecting of minor points like offering patients cups of tea - not so important perhaps for those on one-hour drips but for tea addicts like myself there for the whole day, the small amount of work involved in producing a cup of tea every couple of hours can make all the difference to keeping relaxed and happy. It wouldn't make sense to permit patients attached to a drip to handle boiling kettles, but it seems ridiculous that the friends and family members who accompany perhaps half of the patients during their chemo, aren't allowed to make themselves useful by taking on this teamaking role.
One very noticeable thing at this session was the lack of any front-line presence of a Sister - all previous times a Sister was very much on the ground to keep an eye on things and taking an active part in the caring. Perhaps this lack was why everything went to pieces when there was a crisis. And it was school half-term week, so many of the nurses who were regulars at previous sessions were taking leave. Again, this is an issue where a genuine equal opportunities policy would structure in this half-term leave requirement, and where a bit of imagination in management (such as encouraging patient supporters to take on a teamaking role, or getting medical students in to learn some patient interaction skills during half term weeks) could come up with ways of handling it.
However, company of other patients was enjoyable for much of the time. I was given the last chair in the room with 6 treatment chairs where I have been for the last two sessions. So when my chums Neil (hero of previous progress report) and his wife June arrived, they got set up in a room by themselves at the end of the corridor and hence a second lively session of Chemo Suite Debating Society was rendered impossible. However Katherine, who I had previously been next to in Session 2, was there and we had a good natter. We were then joined by Norma for a 1-hour drip, diagnosed as terminal with advanced ovarian cancer 8 years ago but still in there fighting and with a great deal of spirit about her, even though her weight was down to 5 stone 5 - mind you she had never weighed more than 8 stone. Her younger sister who was with her told me she thought I was being negative in how I was handling my terminal diagnosis, I think because of the emphasis I was putting on being mentally prepared to face death. But Katherine kindly weighed in on my behalf immediately, saying she didn't think I was in the least bit negative, and this resulted in a friendly hour of women's chinwag on our respective cancers, how much better women are than men at coping in situations like this, and smoking (Norma's sister was very determined to believe it made no difference to cancer risk),
But by late afternoon and with my drip running over an hour behind schedule, I was on my own. Seriously tea-deprived, very uncomfortable from a chair which didn't let me keep my back straight, knowing that if I went flat on my back on the floor even just for the few minutes required to prevent pain setting in, the nurses would be seriously furious. Feeling well pissed off that there were no opportunities to discuss pros and cons of more chemo - the nurse who I had a chance to talk to while she was setting up the drip saying that this was something that had to be discussed with the doctor, and that it was up to me to insist on the doctor making the time which I felt I needed despite the appointment slots only being 10 mins.
I was completely whacked, and a ten-minute wait before the cannula was finally removed once the last flush had been completed was the last straw which drove me into tearful mode. At which point a sister immediately summoned from her office and spends 30 mins sympathetically listening to me - I pointed out that 5 mins attention a couple of times during the day would have been enough to stop me flipping and her then being called in to make a lengthy input. It was clear that I had made the defensive hackles rise on more than one harrassed nurse in the course of the day - when under pressure they do seem to always react as if they are being blamed as individuals for the situation however much you try to stress that it's the workings and structure of the NHS and not the individual nurses which you see as the root of the problem. However post-tears, friendly goodbyes were said all round - I rather suspect that without the tears I would instead have got some hostile scowls from nurses on the way out...
Perhaps it was a good thing to have a bout of patheticness at this point in the cycle. I have been wondering whether the deep weariness experienced in the last chemo round might be connected to my not having allowed any space for a bit of weepiness or a few ham psychodrama scenes, the latter of which most of you being family, old friends and workmates will know what I mean by...
However, I feel I have cleared a lot of outstanding baggage out of my life between Chemo 2 and Chemo 3, not least because the steroids hyper stage of Chemo 2 had raised them so clearly to the surface as matters which had to be dealt with to maintain my sanity. These matters ranged from family relationships to what to do about my next door neighbour's two new cats, who are purebred items which hubby purchased as adult beasts, at considerable cost, to replace their twin boys who had both left home last year. It transpired that they (the cats) had never been allowed outside before, and that their preferred shitting regime was to use my front lawn as their toilet - 19 dumps present when I counted before Chemo 2. As if this were not enough, one of them actually made its sitting-out place *on* our birdtable, so instead of watching from my kitchen window a large and varied range of birds feeding, one was witnessing cat intent upon murder. Not to mention sitting on the fence under my bedroom window and yowling in the middle of the day. This had been winding me up very much during Chemo 2 but I didn't want to tackle neighbour whilst feeling volatile about it. So, poo was left in the hope that neighbour would note and take some initiatives, cats were shouted at and called beasts from hell in the hope that neighbour would overhear, mark, learn and inwardly digest. I managed to ignore it during steroids hyper stage of Chemo 3 then talked in friendly and humorous fashion to neighbour when our paths suitably crossed. I had expected this would result in clearance of my front lawn without being asked but having been disappointed in this respect I took advantage of a heavy frost one morning last week which turned the shit into stone, and did the job myself. If situation repeats itself (as I fear it will despite measures by neighbours to encourage cats to shit at home) then I will explicitly request that neighbours clear it up. In most ways they are very good neighbours to have and they do understand why I want to make the garden a no-go area for their cats so am optimistic that this won't lead to major battles.
I think perhaps that if I can write that much about cat shit the time has come to end this email. However being in steroids mode I will continue... Have walked 5 miles today including statutory steep uphills and still no sign of any primary activity in lungs, which I think has begun to confound the chemo docs just a little bit (although it fits in with theories I have about this "carcinoma unknown primary", and with the uncertainty of the biopsy report). Have become taken over the past couple of weeks with the concept of d.i.y. "hocus-pocus" which has in general given those who have received accounts of it a bit of a chuckle. Ask and you will be pasted if you aren't one of these. Also available is an account of my radical hypothesis on the origins of Hathersage. Shortly to come I hope is a description of my increasingly eclectic meditation practices - PM, or Pragmatic Meditation. Over the next couple of weeks I may add such things to my rather undeveloped website as a "Termnal thoughts" section, having just been inspired to such an initiative by www.acampbell.org.uk
This is the (Linux-developed) website of Anthony Campbell, a retired physician
consultant at The Royal London Homeopathic Hospital, which is a National
Health Service hospital and "one of the main centres in Britain for the study
and practice of unconventional medicine." He "deplores belief systems" and
has "strong leanings towards scepticism". I particularly like his
take on "miraculous cures":
http://www.accampbell.uklinux.net/essays/skeptic/miraculouscures.html
- which as he says almost always relate to cancers. He is inclined to the popular
theory that spontaneous cancer remissions are likely to be "some form
of immunological reaction" His conclusion, which gave me a good chuckle,
is as follows:
"A believer in miracles could argue that even apparently spontaneous remissions are really miraculous. Perhaps God works his miracles through "normal" physiological pathways rather than by suspending the ordinary laws of physiology, and perhaps he refrains from curing glaucoma and regenerating amputated limbs in order to keep us guessing, or because he does not want to force our belief. This is logically possible but unverifiable and so can be neglected in a scientific context."
A miraculous immunological reaction - a "secular miracle" - is something which perhaps I could hold out just a morsel of hope for a while longer, given that my immune system has clearly been doing amazing things since well before chemo. Over last summer the "degenerative stiffness" which has plagued my knees for many years just completely disappeared. And, the reading for the "C-reactive protein" blood test which (along with almost every other blood test under the sun they took the day after I was ambulanced to hospital) was 279 where normal is 6, and I gather this suggests a body which is putting up a pretty remarkable fight.
Back to Anthony Campbell, his take on Buddhism has a lot in common with mine:
http://www.accampbell.uklinux.net/essays/skeptic/buddhism.html
That really is enough!
It pleases me a lot how many people are commenting on what I'm writing being useful to them - e.g. in this morning's mailbag: "Each of your reports adds to one's sense of potential human strength. One day I might need that type of strength too,and your example might be what I need to help guide me at such a time." It makes me feel very good to get that kind of feedback, egotistical creature that I am.
My reading in steroids hyper mode last night (in its entirety - have to accept little or no sleep for 3 days) was Bea Campbell's book Diana: How Sexual Politics shook the Monarchy, which I have always wanted to read and found in the Oxfam shop last Thursday when Sarah and I took a charity shop browse on the way back to the bus stop from the hospital appointment. I thoroughly enjoyed it and thought it was an ace analysis. Great to be able to lap up all the scandalous details and feel it's politically correct to do so.
My old GP chum has just written me a very strongly worded email in response to progress report telling me most emphatically that I should be keeping right away from cat shit!
Was a bit low yesterday post-steroids but not *too* bad. Still walking fine and virgin snow v. beautiful. Let's hope we don't have a long icy phase which is what I dread most.
I tell Maureen: Am getting a bit scared that people are thinking I'm vastly more wonderful than I am - be mindful of my wartfulness which can't just melt away... I went into slightly beastly mode to somebody I know in the village yesterday - well she just keeps on paying unsolicited visits despite my explicit and clear requests for people not to do this, and appeared yesterday just as me and Sarah were setting off on a walk. Politely asked her to join us and promptly got pissed off, having to point out that I didn't want to spend a walk listening to her making mobile phone calls, then even so later she needed telling twice not just the once that I wanted to walk in silent mode and listen to nature not chit-chat. Growl.
Maureen tells me she's off to Whitby for the weekend. I say: "If you get a chance please put a bit of sand and seaweed in a sealed container and bring them back so I can smell the sea. I mean it! I got weepy (blame the steroids not yourself, in a funny way it's good to be reminded of the things you need to feel sad about) when I read about you going to Whitby thinking I quite likely won't ever be beside the sea again."
My mother comments on "the serious lack of attention" experienced at the last round of chemo. She tells me: "I've had at least a couple of similar experiences at Brighton, when the nurses available were all rushed off their feet and couldn't possibly be blamed for what was happening. All of us in the wards were agreeing that the trouble was lack of a Matron, because no one seemed to know why the full quota of nurses were not on duty, and it looked as if no one had any idea why they were so shortstaffed, and who else should be there."
Bumped into cat-owning neighbour yesterday and had a good walk back home across the fields with her and chat. People generally not either/or heroes/villains however mysterious the ways they move in. Was very useful to be able to quote "my GP friend" that I shouldn't under any circumstances be picking up cat shit! I think she'll be keeping her eye on my front lawn and picking up in future.
Much preoccupied with the question of whether or not I would be prepared to have a further couple of chemo sessions. The thing with the chemo decision is that when you're diagnosed as terminal the docs simply don't make absolute recommendations over continuing chemo - how *you* feel about it, and whether *you* feel your body can take more, is perceived as a major factor in what's the right decision to make. There simply isn't a body of research which the doctors can point to which demonstrates that x is always the best decision to take in y circumstances.
My perceptions are that my body is telling me very firmly that it's had as much chemo as it can take.
My old friend who's a GP asks: "Do you think the chemo relieves any symptoms?" I tell her: I can't say that the chemo has obviously relieved any symptoms. I was working right up to the weekend I was taken into hospital but since chemo have definitely not felt fit to work. General energy levels (housework etc.) now considerably less than before chemo. I still get big sweats from the head. The "fever" phase of this thing happened Nov 03 to early summer 04 but then ceased (perhaps that was when my immune system started kicking in big-time?), although bouts of shoulder pain and up my neck continued. These aren't happening so much now but then there are big differences other than chemo: I'm not sitting for long hours in front of a computer, I pay a lot of attention to posture, I use mindfulness of breathing meditation very actively as a pain-handling tool, and I consume cannabis in the day if I feel that a significant bout of pain (or anxiety) may be on its way. It is extremely and instantaneously effective. (n.b. resin not skunk which the young things have and which is about 100 times stronger - I have to be a bit desperate to go near that, but unfortunately resin is quite hard to get hold of these days and is sometimes very poor quality.) The sense of tightness around heart which was first inescapably evident on the day when I got myself ambulanced into hospital, has become manifest increasingly more of the time since then but it's at the steroids stage that it reaches scary proportions.
It's warm and the snow's melting but still looking very spectacular. I have Ian with me and we're having a very jolly day. There hasn't yet been a day since chemo started when I haven't had a good substantial walk, and my norm is now 4-5 miles compared with the 2-3 miles to begin with. I don't think this is because I'm getting fitter, but rather because I'm no longer so trepidatious about what my body is capable of doing in this condition.
My mother asks: "Do I have to accept that you would still rather not see any of the family while your crisis continues, or is your thinking entirely governed by your entirely worthy desire to build up your charity funds?"
I tell her: Yes, you do have to accept this. Suggestions that money which would otherwise be spent on visits should go to MAP instead are suggestions that the potential visitor does something which would give me great pleasure instead of something which would cause me considerable stress. Pre-arranged visits from afar remain an entirely daunting prospect. I'm sure my chances for longest possible survival depend on resting when I need to rest, having as few stresses and opportunities for emotional upheavals as possible, and absolutely the last thing I feel I can handle is situations where I feel I'm having to perform, try to be sociable because people have come a long way to see me, put on a good face, deal with other people being upset etc. I have had many comments from friends, in relation to their personal experience of serious illness which tell me that it's not in the least bit unusual to feel like this about visits.
My incapacitated chum writes: "Just read your bulletin and found it made me think about my mammogram visit. Because I need to lie down as much as possible at the hospital, due to stresses on my body of travelling by stretcher in ambulance over every bump in Derbyshire, I had previously made arrangements for a trolley to be made available. I had also had to double my pain medication over past few weeks so as to be able to deal with actual mammogram, with attendant increase in side-effects. So spent most of my hospital visit horizontal in corridor in slightly surreal state. Am used to strange experience of frequently being on different plane than rest of world - seeing a lot of people's nether regions walking past, no way of interacting normally, and this time was no exception - no-one ever paying any attention to slightly odd sight of this woman in street clothes lying on trolley reading Teach Yourself Cantonese in Breast Screening department. On the other hand, reactions of Reception staff and Radiographers very different - much clucking and solicitude and regular checks during the couple of hours I was lying there. Visits to Pain clinic similar - couple of hours stashed in side room for duration, with 5 minutes talking to consultant to break this up. So no chance of chats, debates or anything else, as always away from other patients. Exciting to get out of Matlock, but still need to be horizontal limiting pleasure, as impossible to see properly out of ambulance window - lots of tree-tops, but not much else. Also mainly looking at knees and below of others in ambulance, and sense that other patients find it embarrassing to look at me. Not to mention own preoccupation with dealing with afore-said bumps. So chances for meaningful communication more or less nil."
I have so much admiration for her capacity to continue enjoying life even in such circumstances, and feel my lot is vastly easier than hers!
My mother replies to yesterday's email: Hi, my dearest Jos, So now I understand your feelings better and I don't feel hurt by what your objective demands of us who love you, difficult for us though it is. But i must tell you that our great fear is if you depart suddenly (I don't myself think this is going to happen because of your own positive attitude) - if it did we should all be devastated thinking we hadn't been near you all through your crisis, and would never have another chance. But it is your (underlined) feelings that matter above everything, and if I'm a stronger support by staying away from you that's undoubtedly what I must do.
I tell her: Dearest mother,
It's very reasonable to imagine that I might depart suddenly. As you know the cancerous mass is sitting right in front of and above my heart and it was because it was having a notable effect on my heart that I got ambulanced into hospital in the first place. Since then I have regularly had bad turns when there's tightness around my heart, and when it feels like it's slowing down and contemplating grinding to a halt. This has been at its worst during and just after the steroids phase, and on each round of chemo it's been more scary. When this happens I just have to lie down in dead position for an hour or two and I can't talk. On Tuesday evening I very seriously thought the end was at hand but with the aid of a sleeping pill and my lavender bag from Hvar and the breathing mode which my body managed to take itself into I slept well for nearly 10 hours and woke up to see another day. This breathing mode actually felt quite extraordinary - it was as if my diaphragm was just taking control and using itself as a ventilator, calmly and gently keeping the breath pumping.
The fact that I have these turns - often - daily - is itself one of the major reasons why the prospect of visits is so unwelcome - the last thing I want is people clucking anxiously around when this happens, or me feeling (as I inevitably would) that I have to try to resist my body telling me it must rest immediately, and keep going so as not to cause worry to visitors.
So - in response to you saying "our great fear is if you depart suddenly": Well, from my end it's no bad thing if I depart suddenly, although obviously I very much hope that this won't happen for some time yet. The idea that the whole family would be "devastated" if I haven't succeeded at great stress to myself to schedule in an audience before my demise seems frankly idiotic to me!!! So please mean it seriously about my feelings mattering most and accede (now I don't think I know how to spell that word) to my request *not* to be devastated if this is what happens. What *is* this big deal about seeing people in the flesh? I really, honestly think it's made much too much of. I don't think it's because I'm a cold fish either - well the children certainly wouldn't say I was.
Must boast to a few chums (and son) ...
Up to Stanage all by myself through the snow, I felt very intrepid and thoroughly
enjoyed it. Hadn't really intended to go right onto the Edge - had thought
there was a footpath below the edge running parallel to road on that bit but
no, and realised that it would be much more dangerous to go back down the steep
path I'd come up than to go right up and come back down Long Causeway. Wouldn't
have been able to do it without trekking pole for companion! Was quite late
in the day - was still up on the Edge at 5.15 - fantastic amazing orange sunset
over the snow as I came back.
n.b. the joys of what I can produce with my Anquet maps software. (But n.b. things need viewing at 100% size.) This walk today took me nearly 3 hours without stopping much at all - doing it in the Anquet estimate of 2 hrs 20 mins wd be pretty fast walking I think.
Life suddenly seems much easier than expected. I rang the hospital and discovered (having not been given any indication at all that this was a possibility) that I could email the consultant and she would respond before the next hospital appointment. But, I was finding it difficult to decide exactly what I should ask her/say to her. However, after I wrote an account to mother yesterday of my thoughts about the chemo decision I decided I could just paste that to her! And that actually this was rather a nippy way of saying things which might raise defensive hackles if addressed directly to the doctor. So, email sent to the doc says: "I have written up my thoughts in an email to my mother so please forgive me for simply pasting the paragraphs below without making any effort to reword in appropriate patient-doctor tone (whatever "appropriate" may be!).
And the pasted bit which follows is:
I'm worried about what my heart's doing and I'll ask my GP to give it a basic
checkout this Thursday. I'm surprised that they haven't been monitoring it
at the hospital really, given that it was the abnormality on my ECG which
was the first clear evidence of something being wrong. Although the cancer
not
the chemo is I'm sure the root of the heart behaviour , it's highly likely
that the chemo is making it into a greater problem than it
would otherwise
be. And
it has undoubtedly got a lot worse (i.e. happening more frequently) on this
last round of chemo. I am very concerned that my heart could just give out
if I subject it to more.
The breathing thing certainly is very interesting indeed. I'm sure that most people would be experiencing heart turns like this as "breathlessness". I've always been conscious as a hiker that the secret is to do all the work from your hips and diaphragm, and that way you can keep up steady climbing without getting the least bit breathless. Unless you try to talk at the same time, in which case you have to move your breathing from your diaphragm to your upper chest. As a result of meditating, this breathing from my diaphragm has over the past few years become my norm. When I have one of these "heart turns", it's impossible to utter a word without becoming breathless. I have to go and lie down straight away. But once I lie down (on my back if the sense of tightness isn't unbearable, on my side if it is) and provided that I am left alone completely, I can (with the aid of lavender bag from Hvar in hand and piece of yew on heart as hocus pocus dictates) relax immediately into what feels like "auto-ventilator" mode. My diaphragm takes over, and I just keep my mental focus on my diaphragm and its calm, strong intakes and outtakes of breath. This very successfully prevents me from getting panicky, and after an hour or two I'll be OK again. If it's evening and I take a sleeping pill, I will then be able to sleep.
And then there is this enormous, deep weariness which has come over me on the last two rounds after the steroids stage, just when you're entering the period at which your immune systems are lowest. The feeling that if I got an infection at that point (when you're highly vulnerable to doing so) I would just sink, be incapable of resistance on both a physical and a mental level. This makes me very scared indeed of more.
The orthodoxy of chemo treatment with advanced cancer patients is to carry on until their system can take no more. This is measured by the tolerance you are showing to the toxicity - whether you're having nausea, whether you're losing weight, whether you show signs of being seriously unfit. If these are taken as the main criteria for decision-making, then the doctor's decision will naturally be that I remain fit for more chemo. But in my case, on top of the fears regarding heart and weariness which bedevil the prospect of more chemo, there is the strong sense I have that my immune system has been doing an amazing job in attempting to keep this invader at bay. As a result of which, it may not be the best decision in my case to carry on with the chemo until my fitness has been destroyed.
The two alternative scenarios I imagine for 6 weeks' time are
1) If I go down the chemo route: I wouldn't be surprised at all if I had been
killed by my heart or by an infection during the 6 weeks, and at the end
of it I would expect to be completely knackered with my immune system in
tatters.
2) If I don't have more chemo: I might (but less likely than with chemo) have
been killed by a heart failure. I would have spent the 6 weeks feeling at least
as fit if not fitter than I do now. The mass would quite likely have grown
again, but not necessarily an awful lot. At that point I would hope to have
a further CT scan as I would if I had been given two rounds of chemo, and could
consider whether I then felt able to withstand further chemo to put another
check on it.
But ... I think that the doctor might have an alternative scenario for (2), that the primary lung cancer which she is convinced is lurking will surely have kicked in during these next 6 weeks. However with no signs of this at present I don't think it's helpful to my happiness and good spirits to make plans on the assumption that this will be the case! If I go down route (2) and it's clear at any point in the coming weeks that the cancer is behaving aggressively and that I was less fit than when on chemo I would hope I'd have the option of revisiting the decision.
So - as you can see, I'm very much tending towards no further chemo at this stage. I have spent days researching on the Internet to see whether it might be completely unreasonable to come to this conclusion. I have found among other things that it's becoming increasingly popular amongst oncologists treating advanced cancer patients to schedule in "chemo holidays" to give the body a chance to rally itself before a further onslaught. I have discovered that oncologists predict the growth rate of a mass using what's known as a "Gompertzian" projection. I have a vivid memory from being about 5 or 6 of Dr Gompertz our next-door neighbour at 4 The Fairway coming into our garage to feed our cat on titbits of chicken. I don't think I've ever come across the name anywhere else.
I think that what "Gompertzian" projections means is just elementary maths. A cube with 8 cm sides has a mass 512 cu cm. If the sides measure 4 cm, its mass will be 64 cu cm. And if the sides measure 2 cm, its mass will be a mere 8 cu cm. When I tried to discuss with the nurse who was setting up my chemo last time the pros and cons of further treatment, she was pretty unforthcomng, but one thing she did say was that if the mass had been diminished to a certain size, it was often "amazing" how one or two more treatments could then reduce it quite dramatically. Well - yes... in the example above 448 cu cm of mass have to be got rid of to reduce an 8 cm mass to 4 cm, whereas only 56 cu cm have to be got rid of to reduce a 4 cm mass to 2 cm. But equally, only 56 cu cm have to grow back for the mass to double in size again to 4 cm.
And much more besides ... discussions around buzz acronyms like HQL - Health-Related Quality of Life. I have been pleased to read in a reputable source that "it is of utmost importance to emphasise that all therapeutic decisions must be individualised, targeting the specific histological and biological features that make a tumour unique, and the physical and psychological characteristics that make a patient unique.....there seems to be a narrow margin of benefit between an overly aggressive treatment and one that is not aggressive enough. It is this balance that needs to be sought on an individual basis." As far as I can see it, the big problem in the NHS both with GPs and hospitals is that doctors simply don't have time to give sufficient consideration on an individual basis. And having gone through a year before diagnosis with me knowing that there was something badly wrong with me, and doctors dismissing the possibility - well, it just makes me far more inclined now to stick firmly to believing what my body is telling me.
Consultant promptly replies to my email:
Dear Jos,
Firstly I feel I need to point out that I'm not here on March 10th (I assure you this isn't deliberate) so [standin doctor] and yourself will be making the decision as to what happens next. Hence I've copied this email to her. The CT scan is to help us assess what is happening with the tumour but we do very much take into consideration how much the treatment is taking out of you and what your wishes are too. You are correct in saying that additional chemo comes with additional toxicity particularly worsening of fatigue along with a risk of an infection after each cycle, although the risk of infection overall is small. Most of the time we feel that 4 cycles is sufficient and we only go on to 6 if we see a very dramatic improvement in the CT scan AND you are coping well with the treatment. It sounds to me however like we're starting to take a great deal out of you and therefore it would be entirely reasonable to discontinue at 4. We only scheduled the 5th so that we had that option IF we felt that was appropriate.
The options for next week therefore are to either give you a complete break at present or, if things have shrunk, to consider whether we should consolidate the response by also doing some radiotherapy at this stage. Radiotherapy also tends to make people feel quite weary, although it does work best when lumps are small. Consequently we'll need to weigh up the risk of making your tiredness worse with the possible benefit of treating the tumour whilst it's a bit smaller.
I wonder whether the symptoms you describe from your heart may be the effect of the chemo making you anaemic and clearly that is something that we will look at on the 10th when we do the blood tests - if so we may be able to settle things down quite a bit with a blood transfusion.
I want to reassure you that we don't believe in giving chemo "until your system can take no more". Firstly we may in the future wish to try another type of chemo, in which case if we take too much out of your system now you may struggle when we want to do it again. Secondly and most importantly - as we said at the start we can't cure you so we are trying to improve your quality of life and hopefully buy you some more time. If we end up with you crawling around on your hands and knees then we've hardly achieved our objective. At all time we will very much take your wishes into consideration, we are here to advise you of your options so that you can make the correct decision for you. I hope this helps but I'm sure you'll come back and ask for clarification if there is something you don't understand."
To which my response is:
The joys of email! It makes all the difference to have this kind of input now rather than no chance to discuss until day before treatment scheduled. Added to which I find it far easier to absorb what you're saying when it's communicated in written form. Thankyou very much for this.
I will be very happy to see the excellent [standin doctor]once more, although I do hope that I won't next time find that she appears to be covering the clinic for two if not three absent doctors! If this is the case, I hope she will take the opportunity to get her feet up and conduct her appointment with me lying down on the bed. [She is heavily pregnant.] To be honest, I'm not at all sure what the point is of the Macmillan nurse taking up half of it, but that's certainly not an issue which I would expect you to enter into an email discussion with me about, just a wicked aside on my part.
Re radiotherapy: as I said at the start I am trepidatious about this when it's so close to my heart. I feel this even more since my heart has (in my perception) been showing signs of struggling somewhat. I would need to be convinced that the likely benefits in my individual case outweighed the risks. I may have seriously missed out on some aspect of "Gompertzian" logic, but in terms of crude mathematical models and in the case of a cancer which can't be cured, I haven't grasped the point of aggressive treatment to try and make the mass go away completely, when its subsequent early stages of regrowth (e.g. from 0 to 4 cm diameter) are then likely to be very rapid. I am wondering whether the desirability of radiotherapy from your perspective is based on the assumption that a primary *must* be lurking there in my lungs, and that you aren't therefore thinking purely in terms of "the mass" as the enemy?
I get a response from the consultant within a few hours:
Jos, I'm glad you find this means of communication helpful, we've had a number of patients in the past who find it easier to digest information this way. We do try and cut the clinic when [the standin doctor] is doing it alone but I gather events rather conspired against her last time. Hopefully it will be much better next week. The dose of radiotherapy I'm thinking about is very safe in terms of the heart. It is the mass I'm thinking of treating with radiotherapy - I'm not especially expecting a separate problem in the lungs, although I do think its likely the mass is a central lung cancer that then involved all the other structures in the centre of the chest. However, I recall that we've agreed to disagree on that issue!
I don't think you've misunderstood the "Gompertzian" model at all. I don't expect we'll be able to make it go away all together as the likelihood of killing every last cancer cell is very small. What we are trying to do is slow it down as much as possible for as long as possible. There are 2 ways of looking at it. Either - hit it whilst it's down i.e. if chemo has shrunk it then that might a good time to get the radiotherapy to shrink it further. Or - use one treatment at a time in the knowledge that we have a limited number of options and if we use them all up too soon then we have nothing left up our sleeves for when we have further problems. I suspect you lean towards the second option, which is fine. We know that different people want different things from their treatment and a lot of patients want as much as possible. You seem to want to take it more steadily which is entirely reasonable and may well reflect the fact that you are being realistic about the likely outcomes.
To which I reply: Yes, it's certainly your second option which appeals to me more.
Feeling much better now that consultant and myself seem to have arrived at agreement that - unless there are clear reasons otherwise following the CT scan on Tuesday - I'll have a treatment "holiday" for a while.
I vent my spleen when a work colleague sends me one of those multi-megabyte
Powerpoint presentations of pets in soppy positions - this one called "Sleepyheads".
I say: Actually .... if you had read my last progress report you would know
that as far as I am concerned cats are SHIT! Please please don't send me pictures
of them expecting me to think that they're sweet, all you're doing is making
me feel angry and wound up about the cats next door. I mean it, I'm afraid!
Love all the same, Jos
A quick internet sleuth suggests that the Gompertz of Gompertzian projections must be Benjamin Gompertz, 1779-1865. "He became a Fellow of the Royal Society in 1819. The following year he read a paper to the Society which applied the differential calculus to the calculation of life expectancy." So, maybe our neighbour Dr Gompertz was a descendant of his. Or, perhaps more likely, of his brother Lewis: "English inventor of London; died Dec. 2, 1861; brother of Benjamin Gompertz, the mathematician. He devoted his life to the cause of kindness to animals, and in 1824 set forth his views in a work entitled "Moral Enquiries on the Situation of Men and Brutes," which attracted considerable notice, resulting in the foundation of the Society for the Prevention of Cruelty to Animals." "In the book Gompertz advocated not only the abstinence from the flesh of animals out of ethical considerations, but abstinence from eggs and milk also. He even questioned the ethics of using animal products for clothing, such as leather, silk, and wool, and thus fully anticipated the vegan movement, which was not established until more than a century later. Gompertz' main idea was simply 'that we should never admit the propriety of the will or volition of one animal being the agent of another, unless we should perceive its own good to result from it, or that justice should require it', that is that no animal should be hurt or killed unless that animal itself benefits from it. Gompertz lived by these principles, and took them very seriously, refusing even to be transported in a coach."
Fiona is one work colleague whose emails I especially like receiving. When she worries that she might have said something which upset me, I tell her: You noodle what I've been trying to say to you is that I really do believe you have a very wonderful capacity to say things in a lovely way which makes me feel that you have been thinking about me in a truly caring and reflective manner. And because of that it's very helpful to me in sorting out my thoughts to respond to what you say. Even though my conclusions may take me somewhere different from your thoughts, a dialogue with you helps me to arrive at those conclusions in a non-cross, non-argumentative way.
Spending a long time on the computer working out best routes for the sponsored walk on Sunday. Does my head in, but I've now done my bit and feel I can leave all the rest of the organisation to others.
CT scan yesterday wasn't too uncomfortable and as always, chats with other
patients while waiting were interesting. Haven't been enjoying the past week
or so apart from walking - I've found doing research on my cancer and making
decisions has preoccupied me too much to do the kind of writing and organising
of writing which I want to do, and inevitably, given the reality of the situation,
finding out more doesn't leave me with much cause for great hopefulness whatever
the result of the scan. And oh dear, I'm feeling weary... But it won't stop
me getting out for another walk this afternoon!
