Dear everybody,
Not such good news I'm afraid - the CT scan which I had on Tuesday and got the results of on Thursday shows only a very small decrease in the size of the mass from its 9 cm before chemo. It could be worse in that I could have been one of the 30% with cancers diagnosed as terminal whose tumours continue to increase despite chemotherapy - although it can't be said with certainty that it's the chemo which has prevented it growing, since it's quite possible that it happens in spurts rather than a sustained rate of increase.
So I have to expect that I will be "late" (as the Botswanans say in the wonderful No. 1 Lady's Detective Agency books) in months rather than years I guess. It feels like a process of having to scale down one's "axis of hope" at every step. Pre-diagnosis, hoping it was Hodgkin's disease (which has an 85% cure rate). Pre this last scan, hoping the mass would have diminished significantly, and that I might be able to treat it for a year or two as a chronic rather than acute illness - another whack of chemo every now and then to keep it in check. Now, hopes reduced to a few more weeks of fitness - at this point I can still walk and climb hills as well as ever, and am keeping pain reasonably well under control. But it would be fairly extraordinary if this continued for much longer. Then, hopes will have to be scaled down once again to hoping I can die with a positive spirit and without too much suffering.
Cheerful eh? Well one good thing is no more chemo at the moment. My body feels greatly relieved. As reported in the last epistle, the suggestion when I saw docs before chemo 4 was that as I still seemed so fit, two further sessions might be worthwhile. This possibility was causing me some dread, and it became increasingly clear to me after the 4th chemo that this really was enough for my body and soul. Notwithstanding my continued walking, and my GP saying she'd never seen anybody looking so fit on chemo. The sense of deep weariness mid-cycle is at a different level entirely and got still deeper on the 4th round - a conviction that if an infection or some big stress came along the body and mind could rapidly sink without resistance.
I was very pleasantly surprised that the consultant was happy to enter into an email discussion about more chemo or not before the appointment yesterday (with further chemo having been provisionally scheduled for today). This isn't a service which is in any way advertised, but I was told that this could happen when I got through to her secretary to ask whether I would get a reply to a letter before the appointment if I wrote one. I spent a lot of time before emailing doing Internet research to satisfy myself that I wasn't being completely stupid if I said I wanted a "treatment holiday" at this stage... including discussions around buzz acronyms like HQL - Health-Related Quality of Life.
I could find nothing in my researches which gave any clear indication that a further two chemos at this stage were likely to greatly improve my prognosis - if anything, not more than a few weeks. It consumed a great deal of time and gave no enjoyment to be doing research on my cancer and related topics, and kept my energies from my intended project of putting stuff on my website. And as it turns out, since the wretched mass hasn't significantly diminished, it wasn't really necessary, because they were only proposing further chemo in that eventuality.
At this stage I am trepidatious that anybody and everybody is going to come forward suggesting alternatives which I could now try. Please, please restrain yourselves! I just don't want to spend my time and very limited energies researching into or trying out supposed miracle drugs, diets, supplements, therapies etc. etc. Consider it as 2nd best way to irritate Jos (1st place going of course to multi-megabyte soppy pictures of pets).
My biggest hope is that breathing continues to be painless for as long as possible - it worries me that any form of mindfulness of breathing meditation, however pragmatic, could become a problem. But I'm already finding myself doing a lot of "object-based" meditation, simply because I need to rest a lot but find I don't want to have my eyes closed too much of the time. Lying on my back on my bed looking at the sky is really very pleasant and although currently I always accompany this with "mindfulness of breathing" I guess perhaps I could detach it if necessary ...I feel I need to be building up my armoury of resources now in preparation, whilst at the same time intending to be life-affirmative for as long as I can.
That's enough for now! I will tramp, tramp, tramp for a while, wind and rain
notwithstanding. Hope to see some of you on the MAP walk on Sunday.
Dear docs,
We didn't consider the anaemia issue at apptment yesterday - I was a tad upset that results of scan weren't better and hence it got overlooked. I would like to know what blood tests showed. I am certainly washed-out and weary, tho' still not in a way that prevents me walking and climbing mountains - in fact I've succeeded over past 3 weeks in upping my achievement level in that respect. My pace hasn't slowed from its previous steady even rate without needing to stop for a breather even when climbing the impressive total of 1000 ft from my house up onto Stanage Edge. Let's hope that continues a few more weeks at any rate.
Over the past week I haven't had the same "turns" accompanied by the sense that my heart could just give out which were dogging me the first couple of weeks of chemo round 4. It's been pains in the neck, with one quite bad turn of going red in the face and neck, which have been a worry this week. But I guess given the size of the mass it's inevitable that I will experience such effects, or that my mind will project symptoms of such effects, or an interaction of both, whatever... Is it sensible for me to just live with it as long as the redness goes away again within a few hours, and see my GP if (say) it's still there after 24 hours?
I was rather disappointed to witness what I perceived as an administrative
cock-up with regard to the scan, i.e. that the results hadn't arrived by the
time of my appointment, and that despite having weeks to request the previous
scan to be brought up from the other hospital so the two could be compared
as had been specified, this hadn't happened. I would like to know the full
results
as soon
as these
are available.
The consultant replies within a few hours:
"Jos, Your haemoglobin is 12.6 which falls within the normal range for ladies (and indeed is better than mine, although I doubt that's much of a consolation). I suspect your fatigue is in part due to the chemotherapy and should therefore improve now that we've ceased. However, I should warn you that fatigue in people with cancer is multifactorial and may not improve as much as you might hope. Your episodes of going red in the face suggest that the mass is putting some pressure on the blood vessels - if this becomes more of a problem it would suggest that we should do radiotherapy sooner rather than later - about 7 out of 10 people get relief of the congestion following this. It can also help improve the breathing as the congestion stops the blood circulating around the lungs properly too.
Personally I'm more than disappointed that the scan was not compared with the original - it infuriates me that when the scan was specifically requested to assess response to chemo they did no such thing. We will be discussing your scan on Tuesday at the MDT - would you wish an email to let you know the outcome or do you want to have that conversation face to face? (I recall being told when we first met that you would have been happy to be told your diagnosis on the phone)."
To which I reply:
I'm glad my haemoglobin is normal and ladylike. Yes, I understand only too well that I would be foolish to assume that the fatigue will disappear like the morning mist! I certainly don't expect normal life to be resumed ever again and I expect invalid life to be relatively short. But that post-steroids, mid-cycle weariness just felt like something "parachuted in" rather than internally generated. Convincing ways of describing it are hard to find, but I will carefully compare and contrast the quality of my weariness over the coming three weeks...
Please do let me know by email what the outcome is of Tuesday's discussion
about my scan - it feels a lot more relaxed than all the hassles of f2f appointments
... getting to them, waiting, etc etc. (You would be right to question whether
I would actually have been happy to get my diagnosis by *phone* I do admit.
I'm not at all fond of phones. But email might be another matter in my case,
even for such "big" things as that. I don't have any doubts that
I'm in a small minority in this respect, although I think a lot of academic
etc. chums of mine would agree.)
MAP sponsored walk has happened. The prospect was daunting but the reality was grand. Didn't have to feel any sense of responsibility as old friend Caroline took all that on. Was very gratified by turnout and managed not to feel overwhelmed though didn't talk to lots of people I would have loved to talk to. I was much fitter than many of the participants in terms of walking abilities! Felt I could have carried on up Stanage with the "long route" afternoon walkers, but thought it wiser to come back down from Carr Head Rocks with the lesser mortals.
Somebody who used to be one of my best friends from when I was 25-40 but then had fallen out with quite seriously, turned up for the morning walk. I was very touched and pleased by that, although I suspect we both think the rift between us is too deep to be bridged now on any level other than superficial pleasantries.
My mother has sent me an email after coming back from church where the Gospel reading had been the raising of Lazarus. So her faith in miracles unfortunately rekindled. I tell her:
The one thing I know from my end is that it just doesn't help to dwell on the possibilities of miracles when you have a solid mass nearly 9 cm wide sitting above your heart. It would of course be wonderful if a miracle happened but I don't believe it's something which is realistic enough to set one's hopes on. So yes, I'll stick to more modest hopes! I could go into lots of medical details about why "miracles" are more likely with some kinds of tumours than with others but it's not really something I want to spend time elaborating at length.
Am going out now while the sun shines. Getting on with life is definitely
the thing to do. It's very interesting that all the members of the Symptom
family which visit me at other times keep away when walking. Great
relief not to be on chemo but docs are talking about benefits of radiotherapy
to palliate pains in neck in particular. At the moment though I can consider
it a manageable problem so don't want to go down that route quite yet (if at
all).
As promised, I get an email from the consultant: "Jos, We discussed your CTs this morning. There has been a definite reduction in size of about 10 - 15% and the small amount of fluid seen around the heart has cleared. This counts as "stable disease". Whilst I know that this is not as nice as seeing things shrink substantially it is still an indication that the chemo achieved something as without it I would have expected things to be worse. The real question now is how long is it going to hold things under control as we can see people who remain very well for months at a time after this sort of a response. I hope you're not too disappointed."
I reply:
Well yes, obviously I would have been much happier if it had shrunk substantially but I have already acclimatised myself to the fact that it hasn't. Your suggestion that I might remain well for months exceeds my scaled-down hopes following Thursday, which have been set to remaining well for at least a few more weeks. I think I'll keep the hopes pegged there for now so that anything additional can be considered a splendid bonus!
I have found that pains in neck, and face and neck going red are closely related to spending too long at the computer, which is all too easy to do as there are things I badly want to get done while I can. I'm trying to discipline myself to 45 mins max at any one stretch on PC, and going on my back into deep relaxation breathing from the diaphragm as soon as any members of the Symptom family rear their ugly heads. Accompanied with sniffing of rosemary oil and lavender bag (both from the delightful Hvar which developed its tourist industry in C19 primarily because of its reputation for alleviating chest complaints) and of course my bit of yew tree in my hand. Still no signs of any discomfort from within my lungs and walking still as good as ever. It's sitting for any length of time which is a problem, feels like it kind of creases up the mass. To my delight have discovered this morning that I can do weeding etc. fine in a kneeling position - hadn't expected this because bending over from standing isn't good at all. Still enjoying my nosh as long as I don't have to cook it as well as eat it!
At this stage, the quality of my life is incomparably better than if I'd had
another round of chemo and was going through the ghastly steroids stage and
ensuing weariness again. I feel much more in control of my mind and my body
and their interrelationship, and pain is at a level which I can handle OK.
So I'm just enjoying it when I can, and when this is no longer possible I'll
then have to scale down my axis of hope again - to popping my clogs with a
positive spirit and not too much suffering.
----------------------
I thought this dialogue was a good example of how much you can get out of a doc permitting email relationships.
45 minutes concentration on anything demanding is the absolute most my brain can manage and I don't think my head will ever be able to handle the almost obsessive focussing which would be needed to finish off some bits of computer programming I'd like to get done. It's sitting for any length of time which causes the biggest social problems - offers of being taken for a drive or going out for a meal etc. most unappealing. Am finding that I'm just about managing to occupy the mind pleasantly if not challengingly whilst lying on my back. But talking while lying flat on back I find very tiring, altho I wonder whether this is partly invented because I feel I must have times (a lot of them) when I'm not called upon to talk.
Don't particularly feel like reading stuff about cancer at the moment - feel a bit saturated and there's other stuff I enjoy thinking about more. My incapacitated chum writes: "When result of decision is uncertain, I have become a believer in go with what you feel/want. Wrestling with such problems uses an enormous amount of limited available energy which could go into more enjoyable activity. I was offered funding for a private consultation/tests/treatment by my godmother, but decided that the physical/emotional/mental stress that would be involved in a)choosing someone b) getting to wherever they were based c) coping with said tests/treatment when put against very doubtful result was just not worth it. Perhaps I might now be bounding about with no symptoms, but I seriously doubt it, and wondering "What if I had ...." is a practise I learned to avoid years ago."
I'm feeling pretty OK and still walking. And doing a bit of gardening to boot. Having been released from the tyranny of the chemo cycle, visits seem much less daunting, so I am taking the opportunity to schedule walks with friends from Sheffield. "Big" visits scheduled weeks in advance and between immoveable dates, involving people who I can't go walking with and which are likely to be emotional, I still find a completely petrifying idea. Obviously the person for whom this is most difficult is my poor old mum.
I send another email to the consultant: Not clear from your 15th March email whether mass has shrunk 10-15% in volume or in diameter, which could be quite a lot different...
She replies:
"The 10 - 15% change is change in overall volume. As you say there is quite a difference in terms of change in size and change in volume... From my point of view we classify things into complete response (all gone - we almost never see this with chemo alone other than for lymphomas), partial response (shrunk by at least 50%), minimal response (shrunk by 25 - 49%), stable disease (less than 25% change in either direction) or progressive disease (at least 25% bigger). This helps us to decide whether tumours are likely to respond to further treatments - either chemo or radiotherapy.
Having tumours that respond dramatically does not always turn out to be as good as it sounds. Tumours that shrink quickly often grow quickly when treatment is stopped. Slower growing tumours may not shrink dramatically with chemo, as the chemo is best at damaging cells that are dividing, but overall the tumour may be "controlled" for longer."
I write again:
So, with regard to a result which you categorise as "stable disease", 1) what are your normal recommendations as to "whether tumours are likely to respond to further treatments - either chemo or radiotherapy"? 2) If as in my case patient has elected a "treatment holiday" at this stage but would wish for further treatment after a rest if further treatment was indicated, would you prior to this do a further scan to evaluate rate of growth?
Is it wildly inaccurate to visualise this mass as a kind of thick sheet across my chest - somewhat akin to say a roll of carpet underlay ? (some evolutionary prototyping on the part of God to provide built in bulletproof vests as part of the war against terrorism, perhaps - joke). I do feel a desire to visualise it, and as I'm sure you know the complementary therapists believe that this is a jolly good thing to do.
Will *try* not to plague you with further questions!
She replies very promptly:
The other part of the equation is how long the treatment works for. If you stay stable for at least 3 months and ideally 6 months then we would definitely consider more chemotherapy at that stage. If it's less than 3 months then we tend to find that further chemo is quite tough (as you haven't fully recovered from the first lot) and also less likely to be helpful so would probably suggest radiotherapy depending on what the symptoms were.
Yes, we would be likely to need a further scan prior to that so that we had a new baseline against which to assess the effects of the treatment. This would also give us some indication of how fast things were changing.
I wouldn't so much describe your tumour as a sheet of carpet - it's a blob of something like blancmange that allows it to creep in between the structures in your chest. If it would help we can show you your scans when we next see you.
Slightly pleased with myself for getting some computing things out of the way. One is my macro for converting Word files to "clean" Web pages (i.e. without all the garbage which Microsoft puts in). This is called "htmltag". I developed it as a bit of fun, and have found it serves my purposes very well. Am not at all sure that many people apart from me will actually manage to use it! But the code could be useful for learning purposes. Anyway, I have have now put all the necessary doings available to download from http://www.joskingston.org/Htmltag, and revamped the user documentation.
My other main computing "thing" is "Life
and Death in Elizabethan Norton"
- a bit of in-depth social history research which I did in 1990. I have finally
made the Norton parish register tables available for download from my website.
So
now
the decks
are
cleared to
concentrate
on
getting "Terminal
Thoughts" into online format.
It's amazing really how much I can do and how fit I mostly feel. As long as I religiously stop and go to bed for a couple of hours after being up for 4 hours. Not being able to sit comfortably remains the biggest limitation on my life currently. But it's a great relief to be out of the tyranny of the chemo cycle despite having had a couple of days when pains in neck quite bad. They will say I should have radiotherapy if it gets unbearable, to palliate the symptoms, not with any expectation that it would extend my life.
Still feeling reasonably calm tho in a knife-edgish way - virtually nil tolerance of stress. Having to stop oneself thinking about things is something I'm having to learn fast - e.g. the bits of gardening I can do - enjoying for the moment and not letting my head go off into regrets that I'm most unlikely to be able to do it this time next year, and anxieties about how it will get neglected in future.
I had forgotten to thank Maureen for the sand and seaweed which she brought me back from Whitby on my request. It was in film containers, and was a tad slimy on receipt. I tell her: I do confess it didn't quite evoke that fresh invigorating sea breeze vapour!! But nonetheless it was the principle of the thing which was satisfied and the whiff was nostalgic in its own way.
Going through stuff I've written over the past few months (which is *all* in my mailbox) I've been very struck by the sense that, given the prompts of what I've said in emails, I could probably recall every day since 14th November almost in its entirety with very little difficulty. Everything is quite extraordinarily vivid. I'd like in some ways to think that this is because I've been remarkably successful in applying my meditation practice and Buddhistical leanings to living in the present. But I've seen on the chemo suite how many people's minds do in any case (at least if they don't have to worry about work or childcare) go into a similar mode when they know their days are numbered. This is salutary to be aware of as I already have quite enough of an inclination to think I'm rather uniquely wonderful.
Very rarely watch films or TV due to inability to sit comfortably - I can only handle the discomfort to watch things that are *seriously* good - otherwise my watching is just very short snatches of trivia every now and then.
Am now spending most of my computing time organising things I've written over the past few months into a coherent format. It's frustrating because the old me would just have gone into manic mode over a task like this and whipped through it in a day (well, probably a 16-hour day sitting at the computer with hardly a break) whereas I must spread the job over a couple of weeks. It's keeping me from thinking new thoughts but perhaps it doesn't hurt to take stock and take a bit of a breather.
Have been arranging walks with friends, but even a couple of weeks seems like grand forward planning. Yesterday for the first time I added a substantial evening walk to my day on top of a good afternoon walk. I think perhaps it's going to prove unrealistic to do that and my best plan to take advantage of the light evenings is simply to have a sunset saunter across the fields to Leadmill Bridge and combine it with a meditative lean on the gate looking at Highlow, which is what I do in the morning.
As a general rule I prefer seeing people in ones. I don't like it when I'm being silent and others are having conversations across me which may be on topics I just can't be arsed with or (if walking) blot out the delightful sounds of nature which is a specially tedious thing to do at maximum bird tweeting time of the year as now is. But I think that some combinations might be acceptable where there's sufficient three-way empathy, and have a certain willingness to experiment. Am still having to manage a potential surplus of visitors, and feel quite ruthless about cutting out those with whom I don't feel that I have a strong sense of empathy.
I like to have walking companions who I feel comfortable with, but it's really not a big deal to me to see people in the flesh. I'm starting to realise that in fact there's a lot to be said for being a virtual person existing only in my mailbox. I can edit myself as I please!
The amount of time in the day I need to spend resting is the other big restriction, in addition to not being able to sit comfortably, on being able to live anything like a normal life. But as long as I respect those restrictions I enjoy every day. And the resting is itself enjoyable. I don't usually go to sleep in the middle of the day but lying on my bed with the window open it's very pleasant to go into deep relaxation mode with the sounds of village life and birds tweeting and the breeze occasionally blowing across my face.
Am feeling in need of a good blubber tonight - have had my old friend Sallie from Lewes visit on her way to York and it was lovely but I'm whacked now. Am still too easily tempted into doing too much talking. Anyway I now have the house to myself which is what I need so I can weep away without worrying about how it affects other people. Am not really at all good at doing crying and definitely don't want to do a lot of it but every now and then it feels like a necessity.
I'm now feeling miles better than yesterday. Due to 1) The sun shining 2) Having the house to myself to be blubbery in last night 3) Sorting out my thoughts vis-a-vis analgesics but that is a subject to entertain the masses with in my next progress report 4) A very pleasant afternoon's walk with Debby who I find an unfailingly good and beneficial companion and 5) The acquisition of a very pleasant lump of cannabis. I can be reasonably confident that this is the correct order as 5) happened last in the sequence by which time I was already feeling much better. But it does get my brain going in a rather jolly way I find...
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