Dear everybody,
This is being sent to a rationalised contacts list which I hope includes everybody who wants to get it and nobody who doesn't! Be warned, this has turned into quite a long bit of writing...
Thursday: x-rays done to compare the size of the mass before and after 2 chemos. It has diminished in size which is obviously good news and places me in the top 30% as far as effectiveness of treatment is concerned. However the doc was evidently being careful not to enthuse excessively - I asked her where she would place the x-ray results on a scale from excellent to poor, and her answer was "intermediate". Perhaps it would have been more indicative if I had specified a 5-point scale rather than letting her use a mere 3-point scale. But I think the real issue is that when they have diagnosed you as terminal they don't want to say anything which could lead you to expect miracles. Fair dinkums but obviously I can still faintly hope for one!
The outcome was two more chemo sessions and then another review ... normally 4 on Carbo-Taxol is the maximum they do. (The Carbo bit is Carboplatin - a heavy metal drug which comes as a standard extra with the yew-tree based taxol - unfortunately I can't think of an affectionate and spiritual way of relating to heavy metals as I can with yew trees.)
So, into the megadose steroids phase on Thursday night and then chemo yesterday (Friday). Again no waiting this time. But surprisingly to me, given my much-admired veins, the two sites which the nurse tried just wouldn't let her get the needle in. The routine when this happens is that another nurse is called to try. This one tried again on one of the veins which the first nurse had gone for and failed in the same way (or being very nice, did she just pretend to so that the first nurse didn't feel too silly?) Anyway she then went for a vein in the soft underside of my arm and it made no objection at all to letting her in there. This kind of digging around to get a vein is something people have to endure very commonly and it isn't a nice way to begin chemo. But the small amount of initial shakiness which it caused for me was as nothing compared with what can be suffered by those with difficult veins - for example, it can involve long sessions of having to heat the arm to bring a vein up. The thinner you are, the more difficult it tends to be, so in that respect my good solid weight is distinctly advantageous.
Once that was over, the 5 hours attached to the drip did nothing to prevent a thoroughly enjoyable afternoon thanks to the interaction with the other patients in the room I was in (same room as last time, with 6 treatment chairs), and with the nurses. The room was very hot indeed and Mary who was sitting next to me didn't feel comfortable with a fan on. So, I decided to go bald (last time I'd kept my headscarf on) for the sake of coolheadedness, felt much the better for it, and think it was probably setting a good example - I haven't seen any other women doing this so far. Mary (my age within 2 weeks) had ovarian cancer - taxol treatment a couple of years ago had removed the mass, but then the cancer had come back and this time she was just on a one-hour drip of something different. Most people who come into the chemo day treatment ward are only on a drip for an hour - taxol is the only one which keeps you there most of the day.
An excellent hour was spent talking to Mary, a publican by trade, who had the gift of the gab enough to keep me as the support rather than the lead speaker. We shared the same acceptance that we were facing terminal illness, determination to be positive about it, and desire to have accurate knowledge about our conditions and treatment. She had ascertained that the cost of a single taxol session (not the total cost of a series of treatments) is £1700. (sic - confirmed later by nurses). It would of course be very interesting to know how much of this is profit for the pharmaceutical multinationals. She lost her hair from the previous taxol sessions and had spent £200 on a wig. But she found it much too hot and couldn't bear to wear it - hubby didn't mind her bald at all and she found a thin chiffon scarf was just the thing behind the bar. Her current type of chemo doesn't involve hair loss so she wasn't having to do that one again.
Once Mary had gone friendly relations were struck up with Neil on the other side of me and his wife Julie. Neil was another 5 hour taxol treatment and just the ticket for some grand debate on the state of the nation, which in the course of the afternoon engaged all the other patients who came and went, and which the nurses couldn't resist joining in as well. And so was inaugurated the Chemo Suite Debating Society. Neil is 65 and has been in the building trade (primarily bricklayer) for 49 years. A year ago he went to the doctor (a "young thing") when he developed breathlessness. You would have thought that any doctor would have thought - 49 years in building trade - breathlessness - asbestosis, and sent Neil for an X-ray straight away. But no -"your chest sounds OK to me". So, I am reviewing previous hypothesis that GPs are much more likely to take men seriously than women ...
Consequently, at the age of 64, Neil carried on working for another year as a bricklayer as the breathlessness got worse and worse. He feels very angry indeed with the doctor - he knows it wouldn't have made any difference to the asbestosis being terminal if he had been diagnosed earlier, but he could have retired a year earlier and had that much more time to enjoy himself gardening, woodturning, fishing, shooting.... He and his wife had a very delightful relationship where she openly expressed her agreement with those who disagreed with hubby and knew that he loved her all the more for this. Evidently their daughter kept him seriously in line and had him very well trained indeed on the feminist front. Not the remotest inkling of sexism emanated from him. This was an excellent arrangement for his wife I'm sure, as it just wasn't her style to argue the toss with him directly herself. His politics are old labour - "Us workers didn't know the risk of working with asbestos, but the bosses bloody well knew", but tainted with Thatcherism. At some point in the year his car had been broken into outside his council house (which they have bought) by a drug addict, and all his tools stolen. (You don't want to carry them into the house every night when you have very little breath.) As a result of which he considered all youth as "idle toerags" and was pretty reluctant to buy the idea that drug abuse was the product of a society where we are now moving from 2nd into 3rd generation unemployed, and where it's pretty bloody difficult for young people to feel they have a future to look forward to.
At which point I mentioned the word capitalism, and in came a Jordie nurse with the most splendid speech in the simplest and clearest of language to develop on this theme, focussing on the materialist desires which capitalism indoctrinates us with and what happens in the heads of the indoctrinated when there isn't money available to satisfy these desires. We also had an interesting input from the partner of another lung cancer patient who had popped in for an hour on the drip. Very assertive that the answer to the drugs issue was to legalise all drugs. And on how unfair it was that her son at the age of 12 was "on the DNA register for the rest of his life" because (mother's story went) he'd thumped a bigger boy to whom he had lent £5 and who had refused to repay when he'd asked for it back.
As well as calling into question my theories about GPs taking women less seriously than men Neil had the audacity to have suffered no nausea at all on the same chemo drugs as me when his favourite meal is chicken and red wine. How dare he when I was smugly attributing my lack of nausea to being a vegetarian and not a drop of alcohol ever passing my lips. An excuse anyway for me to get my oar in about eating animals who had lived their lives in small cages and ended with the horrors of the abbatoir. In comes another nurse - "My father was an abbatoir worker and he took us kids to work with him one day. I've been a vegetarian ever since."
I imagine by now you get the picture - there's the material here for a nice radio play I think but I'm not sure that writing it is where my head will take me over the coming months.
I am writing this on Saturday and am vastly less "hyper" with the steroids than I was at this stage on the last round of chemo. I have managed to keep meditating, which I seriously lost it on last time, and have slept 3-4 hours the last two nights whereas last time I don't think I lost consciousness at all any night between the Thursday and Sunday. I also had a hynotherapy session (no cost to me) last Monday as an extra tool in the armoury if I went hyper on the steroids again as badly as before. The session itself, which was individually tailored to me, was fine although I didn't feel hypnotised - I certainly wouldn't have taken my clothes off or jumped out of the window if commanded so to do. It was more like a guided meditation (something which the mindfulness of breathing meditation practice I do easily lends itself to and which is commonly used, whereas mantra and chanting-based meditations I wouldn't have thought it was so straightforward with).
The hypnotherapist left me his standard hypnotherapy CD for the terminally ill to play when I needed to. I put it on as recommended on the following nights before going to sleep, and decided that I don't really want to use it. The semi-classical piano music in the background is cheesy and redolent of the funeral parlour. It is clearly intended for those who are in the process of dying and I haven't reached that point yet - at the same time as accepting that death is likely to come much sooner than I would like, at the moment it's right that I should go on being life-affirmative and not sink into dying mode. On reflection I decided that the input I really needed was guidance with my meditation practice from a practitioner-teacher, so I got in touch with Wildmind, where I learnt traditional Buddhist mindfulness of breathing practice with a couple of online courses.
So that's where I am today. Those of you who I haven't been in touch with since my last progress report need to be told how amazingly fit I am for somebody on chemo and diagnosed as terminal. Have been walking 2-4 miles per day - including twice this week climbing up to Carr Head Rocks (a 948 ft climb from my home as my excellent Anquet Maps software tells me) - this is newly opened access land which commands splendid views in all directions of the Hope Valley and all its many Edges - Stanage Edge, Bamford Edge, Millstone Edge, and over to Mam Tor and with the Hope Valley Cement Works solidly there in front of it.
My mystical relationship with Highlow and the yew trees in the churchard, has continued to develop. One of these yew trees commands a wonderful view straight over to Highlow, and some lower branches have been lopped so as to provide "crutches" at just the height for me to put my arms over and rest there. By an extraordinary coincidence, if you draw a straight line on the 1:25,000 or 1:50,000 map between Highlow and the churchyard, my house sits remarkably accurately right on that line. (House marked by purple cross.) Should I not continue to dismiss "ley lines" as cobblers I wonder? If anybody has a dowser friend in the Peak District they might want to come and check out whether they can dowse a ley line in my garden... That same straight line continues up to Carr Head rocks, although admittedly not straight slap to the middle of the highest contour as with Highlow. Anyway whatever, it reinforces my sense of a sustaining spiritual relationship with these places.
It is now time for a wholesome lunch, a rest and a walk - had hoped that the blue in the sky would develop into something but at the moment it's grey. Whatever the sky though, going out at the end of the afternoon means that the sun can be watched from my yewtree in the churchyard as it sets over Highlow. And I think it's clear enough to make the climb up to Carr Head Rocks worth doing again today as well. So that's it for now.
-------------
A quick riposte from work chum Chris to my comment that "unfortunately I can't think of an affectionate and spiritual way of relating to heavy metals as I can with yew trees":
"Venus (planet associated with love?) is believed to have a coating of "heavy metal snow" on it's upper slopes, a mixture of lead and bismuth. So maybe in another life you will find yourself logging on to EasyRocket for a 2-week ski-ing holiday..
There are reasons to believe that metals migrate towards the heavier end of the table over (a very long) time. They need to be immersed in stars and such like to move the process along. Life will need to evolve to embrace the heavy metals so you are sampling the future.
But perhaps the most inspiring fact is that, if you search "heavy metals" on Google, surprise surprise, you get an assurance from ebay that you can buy new and used heavy metals on their site."
I do love the flurry of emails I get following a progress report... Replies this time around involve me in a good bit of thinking about meditation.
My email to Wildmind asking for individual meditation guidance has resulted in to-ings and fro-ings over suggestions from them that it would be administratively easiest if I enrolled on one of their courses again (having previously done them four years ago). This seems a very cumbersome arrangement to me. I still think their online courses are jolly good though!
An old friend gets in touch. I tell her: I'm battling again more than I'd hoped on this round of chemo with the steroids hyper initial stage. Last time it was a terrible nightmare, the mind actively seeking out things to get wound up about, screaming at John over ongoing frustrations with him, sense of pressure from mass on heart making me convinced I must be prepared for death being more rather than less imminent, the awful image of dying in that state screaming like a banshee at the family...
A structured meditation practice has become a central part of my life. Just the act of taking a breath is a pleasure, especially if the window is open and I can hear the birds, the wind rustling, and the sounds of life in the valley around me. Long may this continue, although the docs are pretty convinced that this will turn out to be lung cancer. However not any sign of any primary activity in the lungs as yet - they seem absolutely fine, and the issue at present is purely the pressure is from the mass outside them.
A friend sends me the Dalai Lama's Instructions for Life - I send a copy to my 93-year old mother, who says: "Dalai Lama's splendid advice is just about the best rule of life I've ever read." I quite like them too.
8 a.m.: there is the most fantastic light over Shatton Moor which in winter I can see from my study window through the bare trees above the viaduct.
Up early due to steroids hyper but more under control than on previous round and this is the last day of steroids. I mail a friend to say that it means a lot to me, to get wonderful individual replies to my progress reports... in particular, hearing how people connect me and what I'm going through with parents or loved ones who have faced terminal illness in positive spirits.
I get a message from work telling me that all the teams in our division have been asked to nominate members for "achievement awards" and two teams have nominated me for an award. "Valued service to the division and department as a whole" etc. My correspondent goes on to say: "We have other nominations such as X and Y for consistent beard length, and some others". I breathe a great sigh of relief at no longer being part of an outfit where consistent beard length is considered a pinnacle of work-related achievement.
I'm so pleased that email lets me be back in touch with an old friend who for many years has been seriously incapacitated. We were part of a "Feminist Mothers Group" in late-70s Sheffield. I tell her: It gives me so much encouragement and support that even with all that you can still find enjoyment in life. So far, except for a couple of awful bouts, pain has been kept at bay with moving around, meditation, a couple of ibubrofen a day and a bit of cannabis - how very lucky I am and I am appreciating it to the full in the limited time for which this is likely to continue possible.
Mentally, have got through the steroids round much better this time than last, but physically I do feel battered. I don't think my body could take any more than four chemos, which is normally the max, but sometimes they suggest more. I'm still walking fine and it's most surprising still how little that tires me, but there are great parts of the day when I have to do no more than just lie and breathe. But that's surprisingly pleasant.
On the topic of visitors, my incapacitated chum has said: "Visits and phone calls ARE a trial aren't they? Necessary for emotional well-being, but I think all except very close and frequent visitors (who won't be offended if pushed out of house after 20 minutes or by erratic and strange behaviour) put you on best behaviour which is extremely hard work mentally and physically... I must say I' ve become pretty rude through all this."
I say to her: It surprises me, now it affects me directly, how unrecognised
the fact is that if you're seriously ill visits may be the last thing you want.
Once
you're
in this situation yourself it's so obvious! And yet it seems a constantly repeated
theme that friends feel hurt because visits are rejected, and that very ill
people feel that they have to go through an exhausting charade in order not
to hurt their friends.
I now have just about all my closest friends since schooldays here with me in my mailbox, which is great! Am becoming very interested in the origins of Hathersage.
Another email from my incapacitated chum. She says: "I think as long as you can maintain a ever-renewable interest in things around, even if just a picture that's been there for years, or a plant outside front door, it keeps things positive - the human mind is very adaptable, isn't it? I only seem to get distressed about effect of heavy medication on mental processes - when I can't remember the sentence I started in conversationI/ latest batch of Chinese characters I have learned." ..."fuzzy/ woolly/ dizzy/ clumsy/ shakes/ curtain between me and what I KNOW is there in my head/ generally struggling all time to stay compos mentis - last two are continuing frustration as now accept the rest. Of course this is definitely an improvement on the pain, which made it impossible to think at all - all I could do was lie very still with eyes closed, so keep taking the tablets! The main ones are heavy-duty pain-killers, one of which affects electrical activity in brain, also used by epileptics, so not surprising side effects."
This makes me feel that I ain't seen nothing yet, I've still got it easy, but that a brave strong woman can hack it! I'm definitely not sensing that miracles are happening. Although I've handled the steroids hyper much better this round than last, my body is feeling weak and battered and the sense of constriction on my chest is present a lot of the time. But ... still walking fine. May it continue for at least a little longer.
On my morning walk today to say hello to Highlow I bumped into a commuting friend's partner coming back from the station - his mum got diagnosed with breast cancer a few months ago, and because she was very fit altho' in her 70s they decided on chemo. She died last week after having got an infection which quickly developed into pneumonia - "it was the chemo which killed her, not the cancer" he says. I do see it as an issue when chemo is being used to buy time for patients whose cancer is diagnosed as terminal - everything happens so fast, your knowledge is very limited, there's no sense that you're truly able to evaluate and make a decision and you feel you just have to follow where medical advice dictates. But that's how it is and I don't intend to go into bitter or regretful mode - and there's a strange sense of the chemo acting as a rite of passage where a rite of passage is required...
My GP chum asks me whether I've tried "visualisation". I tell her: I'm still not clear whether the term means a very specific approach or what... when I meditate I have times when I do visualise the mass and breathe fiercely and sternly down upon it - what more is there to the technique as promoted by therapists etc? Can it be demonstrated that the size of masses may reduce further in those who visualise than in those who don't?(!)
To which she replies: "Maybe I should have kept quiet about visualisation which I don't know that much about. I tried to use it when I first had breast cancer in the way you seem to in trying to imagine outcomes for myself or seeing myself in pleasant situations to abstract myself from less pleasant ones as well as things like picturing white blood cells surrounding tumour cells and evicting them from my body and so on. I have to admit to some violent pictures... I was actually given the slide of my cancer to take to the Marsden so directly saw the little ******* and used that image."
Am finding it very pleasant to have the space in my life to think about and relate to more than the most immediate current friends. Overall everything remains enjoyable much more than unbearable. I'm reading voraciously at present, but ruthlessly skipping - so many books consist of just a few really good ideas and points surrounded by froth.
I've been feeling this morning as if I could do with some drums to beat as I sit crosslegged on my bed (which no doubt is slap on top of my mythical magical leyline) so I can drum up the spirits of Highlow while listening to African music. I start thinking that perhaps it's a necessity to invent hocus-pocus of one's own if you can't find (or afford to find?) hocus-pocus that suits you from a therapist. It's an online article by a friend with ME which gets me thinking about this - http://www.indymedia.org.uk/en/regions/sheffield/2005/01/304596.html
Have
been feeling very whacked - however a bit better this evening. Still walking
plenty!
My mother now has her very own (television-based) email set-up and address, which is a great leap forward.
Have been discussing my cancer and possible relationship to cannabis with old pal from Cambridge when I was a 17-year old sixth-former and he an undergraduate. He asks: "Now that you know your growth is outside the lung, has that modified your thoughts on its cause?"
I reply: The doc in charge of the chemo seems to have invested a certain amount of personal capital in believing it must be a lung cancer. And vicar's daughters do so love something to feel guilty about and to blame themselves for... if I were around to see when they chop me up after my demise I wouldn't think it was that big a surprise if there turned out to be pre-cancerous cells in my lungs but not an actual primary.
Physically my poor old body does feel a tad weary and battered, and the sense of constriction from this mass on my chest is strong tho' not what I would call painful at present. Notwithstanding - I can still walk! And have continued doing so, 2-4 miles every day with some good climbs. Apart from walking and reading I meditate and listen to music and look at the sky and have great fun with my daughter Sarah who is here a lot of the time and son Ian who is here a very good amount of time for a chap with a high-powered job. It's very doubtful that we would have got round to making such ace space together if circumstances had been other than they are.
The usual routine is that Sarah's here Sun - Wed, Ian Thurs, John or (every 3 weeks) Roy at weekends, but when I'm feeling reasonably OK I do like to have the odd night on my own.
Haven't heard anything at all from work which makes me wish I was back there! Not having to put up with all that is most definitely one of the joys of the situation!
Have been corresponding with GP chum about hocus-pocus. As with my incapacitated chum, this friendship dates back to the heady late 70s days of the Feminist Mothers Group ... we also had a Feminist Awful Singers Group at around the same time, but everybody except me was only pretending they were an Awful Singer...
She says: "Inventing hocus-pocus of your own and constructing your own narrative are not the same but may be related! Hocus-pocus sounds a bit perjorative. Was that a sop for me or what you think? I do think it important to find your own 'therapies' in the broadest sense, whether paid for or music or what as I don't think our bodies are machines to be tinkered with by doctor mechanics, but something with resources we can mobilise to help even if only to cope. I see this with patients who sometimes do wonderful things."
A very old friend has been planning to stay the same time as my next chemo and to accompany there etc. I decide I can't be doing with this. I want to stick to the Thurs a.m. and Ian with me the Thurs night and take me to chemo Friday. I just feel too weary and battered to do it a different way ...
I tell her: Apologies for this but it's how it is. We'll have to see how it goes thereafter - there is a real problem about making advance arrangements - it just feels like pressure I can do without, fuck it I'm getting enough pressure from this fucking mass inside me. This may change if I have a few weeks/months of a stable situation following the final batch of chemo but I'm not going to make plans which bank on that.
Very pleased to be back in touch with Maureen who I worked with for many years in Sheffield Women's Printing Co-op - we were both founder members of this venture, which survived for 20 years without grants from anywhere and wages paid relying entirely on work invoiced. We share a pride in this achievement, and in being able to establish a workplace which provided complete flexibility around childcare and paid a lot more than the working-class members could earn in places like Prontaprint. Maureen tells me that all the Co-op records have been placed in Sheffield City Archives which I think is a jolly good thing.
I
like doing quite a bit of nostalgic listening which includes bopping along
with
print
co-op
frontroom
favourites
such as
Alberta
Hunter
and Ella
Fitzgerald. Greatly looking forward to Maureen bringing me a tape of "Ella
and her Fellas" (Also known as the Ink Spots?), which has been running through
my mind for a while.
Get a good chuckle from my very witty pal Chris from work who takes up my thoughts about hocus-pocus/oker boker and tells me:"I'm getting a picture of a sort of Norse Tommy Cooper, handy with the battleaxe and so forth but really hoping for recognition in the serious magic front."
Early morning hocus-pocus is becoming a routine: I send some African music
in the direction of Highlow just as I'm sure the pre-Christians would have
drummed from the yew grove in the direction
of Highlow.
My incapacitated chum tells me: "I completely banned all visitors for quite a while. I found this easier than struggling for a few minutes, then feeling awful about having to tell them to go, especially since they had usually travelled quite a way to see me.... ...I think that even if it was a well known fact that seriously ill people have difficulty with visitors/ phone-calls, friends would still give in to their own need to make personal contact to offer comfort and support - this is totally natural, after all....So I think we're stuck with the unenviable task of rejecting in an acceptable way."
Friends in Sheffield are organising on my behalf a sponsored walk in aid of MAP. Carr Head Rocks will be the destination. I'm asked: do you want any reference to you at all, or just in aid of the Palestine Medical Fund? To which I reply: you must guess that I'm loving all the attention! I'd like my name associated with it ... or are you concerned that this may deter from giving generously, to a cause which they would otherwise naturally support, the more politically correct of our network who in the past have emitted strong indications that they consider me wholly beyond the pale ?!
Am feeling well today. Still very taken indeed with Oker Boker. The more I think about it the more I feel this chap is an appropriate pray-ee for pray-ers in situations such as mine to address themselves to. As the spirit invoked by magicians to make things disappear etc. he does seem an appropriate choice from whom to request miraculous meltdown of mass. And he also might be seen as the spirit of good humour and fun.
I tell a friend: The steroids did send me hyper again but I handled it vastly
much better this time. I didn't have nearly so much outstanding baggage in
my head to home in on as last time, which was a great help. But then (last
Wed/Thurs) I felt very weary and battered - not so as to keep me from walking,
oh no, but feeling as if my body and mind could easily fall into the path of
least resistance if an infection came along. However I managed to buck out
of it - not least because I have gained myself some great amusement by thinking
about "hocus-pocus".
After initial communication failures between hospital, my health centre and myself, my GP now phones every week which I really like because that means she relates to me in my normal (albeit always a tad manic) mode, rather than the usual situation of only relating to a GP when being at the end of your tether drives you into a visit.
My 93-year old mother is getting into the swing of this email business: "Hi, Jos, I'm told this is the correct netiquette salutation embracing all degrees of affection!" She is very entertained by the concept of netiquette and we have merry discussions about the horrors of "emoticons" etc.
Local friend mails: "Bit misty and gloomy this morning isn't it?" I reply: Corny I know, but I really am so focussed on enjoying the present that the misty days have not been in the least bit gloomy days. Favourite walk on such days (usually at the moment with my daughter Sarah) is what we call the "Brookfield Manor trespass walk" - go into Brookfield Manor via legal footpath, then trespass all the way along Hood Brook (keeping fairly high to avoid swamps) to the fence in front of Brookfield manor, where there is a gate about halfway between the gate on the drive and the brook. This is currently used by riders and so is kept open or openable. You then turn right and find an old (and urgently in need of repair) bridge, which you can cross and then quickly join the Baulk Lane track for a loop back home.
Yesterday we walked up to the paper mill - a place perfectly suited in atmosphere to a misty day.
Thank heavens I'd moved to Hathersage. Facing this in the inner city would be a whole different ballgame and one where I couldn't possibly feel so calm and even positively happy. There honestly hasn't been a day yet when I've found the weather dreary! I enjoy the mists and have had some lovely evocative walks by river and through woodlands when the weather doesn't call for climbing (which I like to do as much as possible). My lungs are still breathing beautifully.
I have a very full mailbox these days and it can be hard to keep up.
I ask my mother whether she is also able to laugh at my irreverent Oker Boker thoughts. She replies: "I'm happy to contribute to your naughtinesses/fooleries provided you never, never inflict on me the typed-sideways emoticons because I used to endure handwritten ones from my friends on Death Row (my present one on life doesn't seem to indulge in them)."
Friends invite me to exciting events. At the moment I can't imagine that I'd want to do anything anytime except stay in Hathersage - prospect of travelling anywhere much too daunting.
I feel cross with John's cousin who has sent me an email telling me (among other things) what a "damn good" partner he has been to me. I tell her: Regarding John, I'm so glad that he has loyal friends to support him. And yes, he has in many ways been a good friend and I am happy that he is the father of my children but no he has *not* been a good partner for me - I would say that two people as volatile and strong-willed could never have a comfortable partnership. And no he has *not* been sensitive in relation to my needs and desire to lead an independent life and not be half of a couple, which I have asserted right from the beginning. I truly believed that I was having children with somebody who had made a genuine commitment to 50:50 childcare, and felt completely let down and powerless from when he chose to make his work a 100-hour a week commitment and leave all the childcare to me and of course it was true that he was doing wonderful work setting up Heeley Farm, but I too wanted to do wonderful work... the past comes rearing back in my face at the moment, when John hangs around as if I need a bloody babysitter and is very insensitive to my need to be in control of my space and who else is in it and when.
Even though this big mass which sits in front of and above my heart is such a solidly physical thing, when I feel stressed is when I feel actually positively ill - I feel I can add days, weeks, months to my life expectancy if I can avoid stress.
Had an excellent hike and lunch this afternoon with Maureen. Past disagreements comfortably revisited, chuckled over and put to rest. A great pleasure - we share so much important history in our lives and most of it is worth looking back on happily and quite proudly.
A nurse friend entertains me with an account of helping at the delivery of a calf. She says: "my opinion on cows is that they are devils spawn and are only good for a glass of milk. I would walk miles to avoid any meeting with one. I have been chased on many occasions and I really believe they are dangerous killers. So there I was standing in the middle of the cow shed, but I was so excited that I forgot I didn't like them! The poor old cow that was trying to give birth was walking around with a pair of hooves sticking out her back end. We managed to get her into a separate area which was clean and dry and she eventually laid down. They put some rope around the hooves and pulled. Eventually out popped a beautiful boy calf. The cow was amazing. She went from looking in pain to confused to real contentment as she was licking the gunge off, it must taste nice! I never realised a cow could show so much expression."
This tale provides a good opportunity to air one of my favourite notions: My theory on cows is that they became very angry with humans as a result of BSE and Foot & Mouth, and were thus pretty aggressive for some years. But I think they have calmed down over the past year or two. Perhaps more farmers have come to realise that they care about their cows. My mother comes from a farming family and my holidays were spent on my uncle's farm along with Daisy, Buttercup and all the rest of them and very well indeed I got on with them all. Small wonder if "2452" has more difficulty over building good relationships with humans than Buttercup did.
An old chum says of my Progress Reports: "If it was not for the gravity of the situation, I could say that I enjoy reading your narrative and that I look forward to the next instalment." I reply: I would feel a bit miffed if friends *didn't* enjoy reading my progress report. I'm so lucky to still have this level of fitness which lets me walk and pain that is relatively easily handled - living in the present and enjoying it to the full is very definitely my philosophy.
Lungwort, snowdrops, primroses and crocuses out in my garden but daffs not flowering yet.
Maureen had not liked to see the unfinished decorative state of my stairs and landing and had wanted to hatch plans for its completion. I have had to work very hard over the past months to reconcile myself to this constant reminder of energy running out (this happened nearly a year ago), but I can't bear the idea of the disruption and the smell of paint. So I tell her: I do think you're a bit of an old ratbag to go sowing the seeds of discontent in me about my incomplete house when I'd got myself into a mode of settled comfortable acceptance. Humph! Still what do you expect these ageing radicals to do except go round sowing seeds of discontent.... Anyway my pleasure in seeing you was of course undiminished by the realities of you being Maureen.
My incapacitated chum talks of "endeavouring to banish patheticness". Am very taken with this phrase and reply: "Very hard I find to get the balance between endeavouring to banish patheticness from my life (you may write brief emails but they're almost haiku-esque in the expressiveness which gets crammed in!) and to permit oneself some patheticness as a rest from feeling like you're constantly, endlessly battling...
Friends in Sheffield send a draft copy of the sponsorship form for the MAP walk they're organising on my behalf. I ask for a slight change in wording so "Jos heard before Christmas that she had cancer" reads "Jos heard before Christmas that she had a cancer which has been diagnosed as terminal." The reason for this is that it really is very tedious and unhelpful for people to tell you that they're sure you'll get better and for me to have to explain that, unlike with breast cancer, this would be a miracle rather than a strong possibility and that I have to be mentally prepared for not getting better.
I am still tangling with the problem of a convinced atheist wanting to have faith in something. I tell my mother: Without having faith in something you can't hope for a miracle. Given that I have been diagnosed as terminal it would be a miracle rather than a strong possibility for me to recover and I have to be mentally prepared for not getting better. But at the same time, of course I want a miracle to happen. The happening of miracles seems to be closely related to faith, hence the question of who or what I can have faith in inevitably gets raised.
My mother is coming round to enjoying "this instant conveyor of thoughts", as she describes email.
Feeling greatly relieved that this week's chemo will be the last.
