Chemo round 1

18th Dec 2004
Progress report: Still in the land of the living

Sudden death was not an outcome of my first chemo session yesterday I'm pleased to announce. So here I am 24 hours later still not actually feeling any effects, just feeling hyper. I had to take vast doses of steroids the night before and the morning of the chemo, then there was another vast dose in the cocktail of drugs prior to the chemo, and now for three days I'm taking a smaller amount. Presumably the steroids are forcing my body through the trauma it's been subjected to and the effects of the poisons may not kick in until the steroids kick out over the next few days. I'm told to expect to be at my lowest next (Christmas) weekend.

The chemo itself was no big deal, apart from being in a room on my own for nearly four hours just waiting until the chemo came up (they don't prepare it until you arrive), and then waiting until there was a chair for me in space where nurses could oversee the treatment. The waiting definitely a drag, especially as part of my routine to stop pain setting in in my shoulders (which is where all my pain is), is to lie flat on my back for a while every couple of hours or so. There was nowhere to do this except the floor, and although one of the nurses gave me a blanket to protect me from its coldness, having got myself settled suprisingly comfortably along comes another nurse and is most cross to find me doing such a thing as lying on the floor.

Due I think to having had that time flat on my back, having to sit in a chair for five hours while the drip dripped was bearable and it made a lot of difference that the chair had a foot bit that came up. The only way I could have a bed to lie flat on some of the time would be to have the chemos on a ward instead of in the day treatment suite, so I feel it's best to work around it. It turns out they can give you a pager so you can go away for instance into the park while your chemo's being made up, so that's a big bonus. If the Art Gallery is open (some hope!) it means I can eccentrically lie flat on a bench in there contemplating Art.

I'm doing lots of meditating, very glad I am that I did a couple of online courses a few years ago in Buddhist mindfulness of breathing techniques. Sitting on my sofa or in my bed I'm facing towards Highlow. This hill has always had a special place in my affections, because its name suits me and because it's a mystical ancient burial site and because it's beautiful and because it's there in the centre of the landscape to be seen from all around. I put it in the centre of my mind and call on its spirits to protect and defend me wherever this journey takes me. I hold a piece of yew bark in my hand because that's what the main chemo drug I'm getting (Paclitaxel) is made from. It takes an awful lot of yew tree to treat one patient and has been raised as a significant environmental issue in the States. I think they've now sorted out how to produce it from European yew trees and from clippings rather than killing the trees by stripping the bark but I still suspect there's a big issue here for yew trees given how slowly they grow and how quickly the pharmacuetical industriy wants to make big profits. So, as well as asking the yew trees to be my friends I'm promising to be their friend and watch out for them.

Also, I'm doing lots of sniffing of rosemary oil from Hvar in Croatia, where we had a wonderful holiday a couple of years ago. Hvar in the nineteenth century became a major resort for chest sufferers because of its pure air and the herbs, rosemary being especially important. Hvar people are amazingly healthy and long-lived. I breathe in the rosemary and think myself in Hvar and sternly focus on the mass and tell the rosemary as well as the yew trees to concentrate on getting it dissipated whilst being kindly to my organs. It does make me feel optimistic that the mass is outside any organ and that in fact my organs feel pretty remarkably healthy. But the doc is very inclined to believe that the "unknown primary" is my lungs, simply I think because the mass is sited in the chest. So, I'm kind of prepared for some specific lung cancer symptoms to start showing themselves and prove me wrong.

I now need a rest after all this writing. Fortune will truly be smiling on me (in the short term anyway) if the next epistle manages to sound so cheerful!

19th Dec 2004

Still no nausea etc. but I need a rest just after breakfast, a bath, and writing a few lines!

Xmas will be very low key with family in and out in various permutations and combinations. Definitely can't be doing with stuff like sit-down big meals, jolly good excuse for avoiding the ordeal I say and especially now that I've reached the point of vegetarianism that the idea of so much as sniffing meat - even a wholesome organic free range guinea fowl who has led a happy life but no doubt has been unable to avoid a miserable abbatoir death - puts me off eating anything.

My mind is much preoccupied with the question posed in such forthright terms by departmental placement student: "Do you find that illnesses are an eye opener to life and the search for answers to the fundamental questions about the Creator and mankind?"

I have no expectation that I'm going to break the habit of a lifetime and start believing in God. My atheism is deep-rooted. My 93-year old mother has now come to grips with using email, so I decide that discussing the meaning of life with her would be the best way of making her feel useful. My father was a clergyman, but she is of generally liberal tendencies and I know she can handle me airing my subversive thoughts. I write:

Here's my current conclusion on the meaning of life for you to cogitate: What's the point of God when you've got nature, that's my question. Just an unnecessary layer in the order of things, I would have thought. Invented needless to say by men so they could take credit for the creation.

A friend says: How can you make the waiting around part of the chemo better? Will they let you take music in? I know if it was me, the right music could really make a difference to the experience.

I tell her: My sister gave me an Ipod but I never have liked music coming straight into my head from headphones and now I find it unbearable. I'm happy enough mostly with quiet. Not that I don't have some good blasts of music from proper speakers when at home. And Sarah is very happy indeed to have acquired an Ipod, and I'm pleased that she gets such glee from it so the present was most welcome.

I like strong, positive music. African music in particular. Sarah wishes that I would hurry up and get bored with one particular song, "African Dream" which I play over and over again. I can ignore a particularly cheesy saxophone solo, but she can't.

21st Dec 2004

Tuesday morning and still doing OK. Not anticipating that this can possibly keep up but let's hope the worst isn't too bad. Managed to go for a lovely walk Sunday up to say hello to the yew trees in the churchyard and then on round the circuit of Carr Head Farm, Moorseats, down through the secret garden gate and back. I hadn't anticipated something like that would be possible at this stage.

I am encouraging friends and family who want to make a gesture of support to donate to Medical Aid for Palestinians, and have set up a "bmycharity" web page so donations can be made online.

My webpage says:

I have been diagnosed as terminally ill with a cancer. I keep thinking how privileged my circumstances are for facing a terminal illness, to live in a comfortable house somewhere as peaceful and beautiful as the Peak District, to have fantastic children who are old enough to cope with it, good health services available and enough money, etc. etc. In recognition of this, as I go through chemotherapy I'm asking friends, family and work colleagues who want to make a gesture of support to give money generously for medical aid to women in Iraq or Palestine. Having looked into possible charities through which funds raised could be channelled, I'm confident that MAP is a good choice. Please give generously.


My youngest sister tells me that she's "frightened of saying the wrong thing" to me. I tell her that: Fear of saying the wrong thing seems ... well ... spineless to me - what's the problem with you saying what you think, me saying if I don't like it, and you responding - wouldn't that be more of a meaningful relationship? Anyway I think you know perfectly well that as far as I'm concerned saying the right thing at this stage is giving generously to Medical Aid for Palestine.

My email discussion with my mother on faith, the meaning of life etc. proceeds in leaps and bounds.

23rd December 2004

Am feeling very cross indeed with my youngest sister. She sent me an email yesterday describing my reply to her plans for bringing my mother to see me (13th Dec) as a "torrent of rage". I tell her:

I really don't think you should be handling mails between us in work time in your work mailbox.

Quite honestly you seem a lot more preoccupied with *your* feelings about the situation than with quietly trying to understand and empathise with what I'm going through, which is what *I* need. I don't see why I need all this stuff in a mail from you about how upset *you* were about my definiteness that I couldn't handle the idea of visitors? And really, "torrents" of rage are a better description of what you're delivering to me - my mails were succinct one-liners with a certain black humour (in a scenario which did naturally conjure up Victorian melodramas) which I think I am permitted! Can you not see the funny side?

Wouldn't a supportive approach from you be simply something like "when I think about what it must be like for you going through chemotherapy, I can understand why you might feel that you don't want visitors"?

Ah well a day. Lots of love...

However, a very definite redeeming point is that she has now understood that for me "virtual flowers" in the form of a donation to MAP give much more pleasure than the real thing.

24th Dec 2004

I'm very pleased to just let Christmas pass me by and continue in my zombie-like state with family floating in and out - there'll be somebody here all the time but I expect I'll be pretty anti-social. Actually I'm quite contented treating myself as an invalid and meditating upon the meaning of life etc. etc. - what a reflection on work that chemotherapy might be considered more pleasurable! No doubt the novelty will wear off but I'll enjoy it while I may. Big bonus is that I'm still able to enjoy a walk.

Haven't felt nauseous yet apart from the odd bit of heartburn sorted by cups of peppermint tea. I actually enjoy my food as long as it's extremely wholesome, i.e. quantities of fruit, veg, yoghurt, wholemeal bread, bran flakes and organic fruit juice get eaten. Plus home-made lemon curd from the delightful Callis sisters of Castleton and not much else. John has a greatly-appreciated role here as vegetable-grower albeit not nurse.

An old friend replies to my thoughts about God (19th December): As to the meaning of life, more of that later but I agree certainly god is out of the equation, with fathers like ours on earth who wants another one in heaven.

I have decided that contemplating the meaning of life really is very interesting and definitely a luxury... The space I'm having now seems a bit like the young things who take off to India to find their souls. I know I couldn't possibly feel like this if I still lived in the inner city, or if I had young children to care for.

Placement student replies to my email (16th December):

Dear Mrs Kingston, Good to hear from you. I see. Actually, I am a Muslim in 'Islam. It is my duty to do what is best. I haven't seen a charity like the one you have setup in this country. May God guide you Insh' ALLAHt'aala (God willing). Obviously, not everyone is under the control of the media. I can you send you some interesting clips if you like which is related to your charity and how people's lives have been changed in relation to the first e-mail. Take care Mrs Kingston.

I reply: Thankyou for your note. I'd be interested to know what you think of the work of Medical Aid for Palestinians. I do hope that you believe that your duty to do what is best according to your faith, will always mean a humanitarian caring for others. [I don't hear from him again after this, which I'm rather sad about.]

Seeing as I'm invaded by this great blob of jelly-like mass I've decided to be "jelly woman" and me and my daughter Sarah go round singing "Jelly woman yeah yeah yeah" to the Roy Orbison tune. Humour definitely a requirement. It's a very, very hard and tough jelly.

25th Dec 2004

The snow has snowed, the sun is shining, I had a jolly good night's sleep and a pleasantly restful morning (contemplating the meaning of life) and now if John's up to it am going for a walk. (The poor thing has guts ache which has happened before - I fear he might be an ulcer type of person.) Everybody in family seems perfectly happy with this non-event Christmas mode - Sarah and Ian have been here a lot so not at all bothered by them not being here today and doing Xmas together in Heeley - they have become very much a family unit in their own right anyway.

26th Dec 2004

Boxing Day and still feeling remarkably good. The main issue at this mid-cyle stage is that because of what the chemo drugs do to you, your blood count goes extremely low and you are highly vulnerable to infections and if you get one have to be whizzed straight into hospital. Avoiding infections (i.e. keeping away from people and keeping your teeth very clean!) is the key strategy.

Had another beautiful walk in snow and sunshine today - went 2-3 miles with some stiff climbing and felt fine. Thoroughly enjoyed watching Beuna Vista Social Club on the television Christmas night.

Doing lots of meditating following the traditional Buddhist mindfulness of breathing practice in quite a disciplined way. The techniques have to be learnt (which I did a few years ago from online courses). It's not something which can be done effectively if you're sloppy over posture or let your mind wander freely. It's a really positive thing about all this to have the space and time to devote to it in a sustained way. I think it has major effects in terms of pain control as well as calmness.

Added to the joys of longer walks it's just 2 minutes to nip down the lane and lean over the gate to contemplate my favourite hill and ancient burial site Highlow which is an extremely pleasant occupation. It is very nice the heightened awareness you get from being in this kind of situation - greatly intensified pleasure from the joys of nature etc.

Am sleeping well - admittedly courtesy of sleeping pills but I think that's acceptable at this point in time and am very pleased to have been prescribed one (Zopiclone) which actually works! I'm going to have a bash at only taking half of one for the next couple of nights to see whether a whole one is really necessary. But I think if I can keep up successive good nights of sleep that has got to maximise the chances that the yew can do its work and shift this unwanted lump of solid jelly off my chest. I go to sleep with a piece of yew bark in one hand and a bag of Croatian lavender in the other.

Hair loss likely to commence in another week or so. I really couldn't care less except it may be itchy! I have a hair net at the ready in the drawer by the bed so I can pop it on straight away when first signs of fallout appear thus avoiding the dreaded hair on pillow scenario. [This never got used.]

28th Dec 2004

I'm not reading very much at the moment apart from bits of poetry here and there and the occasional whip through something light like Cadfael or Ladies Detective Agency. Mostly I walk, sleep or rest, meditate, and play backgammon. Yesterday and again today have been out for excellent walks including some good steep climbs, and I'm feeling fine.

Roy (my very old chum and romantic lover from across the Pennines) was meant to be coming yesterday but he's still coughing up a lot of nasty sputum following his pneumonia and I consulted the hospital as to whether this posed me a risk at this stage. They said yes, for heaven's sake put him off a week. Even though I've obviously been exposed to his germs before I'm enormously more vulnerable to them in the period 7-10 days after the chemotherapy, and then the vulnerability tails off as my blood count restores. So, hopefully he'll be coming New Year's Day for a couple of days. He promises me that he will not suddenly fall in love with me at this point in time - I was a bit worried that this is the sort of thing men do but he had a good chuckle at me asking for assurance on this point so I think I can trust him not to! I really *do* like having my own space and being my own person and not being suffocated by somebody else's feelings towards me.

30th Dec 2004

Needless to say, what's been happening in the world (the tsunami) has made me feel even more acutely conscious of how privileged I am.

Roy's doctor agrees with my hospital that he could pose an infection risk to me, so he's got put on antibiotics. I write to him: Am feeling very well but my hair is due to fall out sometime in the next week if I'm as normal for this type of chemo so be warned... I read that it happens all at once so Sarah and I were having a good laugh .... at the till in a shop and ping, off it drops; at the height of sexual passion and ping, off it drops... but anyway apparently it's not *quite* that dramatic and usually happens overnight preceded by strange sensations in the scalp. I really don't care very much about losing my hair ... have been given some nice headscarfs. Will worry that the drugs aren't working if it stays on too long!

31st Dec 2004

Cathy, a friend from the next village, writes: "This evening, a few of us who play together played for the folk with dementia and alzheimers at Bakewell hospital and that was just the best thing I've done this Xmas. Some - indeed most - began to dance and sing slowly and gradually and gracefully."

To which I reply: The do at Bakewell hospital sounds lovely. It's been something I've positively enjoyed about the spells in hospital getting to know some very interesting and plucky old ladies. I've always loved encouraging old people to tell me about their lives and they seem to like it as well. It's salutary how you can find yourself with enormous admiration for somebody who has kept you awake all night with their vomiting.

3rd Jan 2005

Friends and workmates come up with an endless variety of suggestions of alternative treatments I might try. But at the moment I feel focussed on going through the chemo - if mass hasn't diminished after the 2nd round I imagine that would be the point when I'll start thinking about alternative treatments. I don't know - it will become a completely different ball game in that eventuality. For the time being there is still room for hope that the mass will significantly diminish in size after the chemo, so I'm doing my best not to cloud my days with thoughts of the times when hope may no longer have any logical foundation. Whilst also feeling that I must be mentally prepared for this eventuality. It's a bit of a difficult balance.

Hair still on my head more than not on my head but running one's hands through one's hair no longer a wise idea. Headscarfs within 7 days I should think.

My oldest friend writes: "In a strange way maybe all that shit at work helped you deal with this having already begun the practices of meditation and considering buddhist philosophy... I know it is a cliche but experience is always just what you make of it in the end, and you really seem to be making something remarkable of yours."

I tell her:

You're right about the shit at work forcing me to develop strategies which are helping me now. As well as learning the meditation, realising that I was never going to achieve anything in my working life forced me to perceive myself as a speck in the universe which is very helpful indeed when facing likelihood of death.

Am getting slightly ... not exactly annoyed or irritated but perhaps edgy, about people telling me how remarkable I am. I feel that I ain't seen nothing yet. I'll reserve judgement for now and also hope I don't have to prove my remarkableness by facing up to a mass of undiminished size.

Still getting out walking every day for 2-3 miles and feel extremely fit in the circumstances so that's good. Today I even went on my own which was a leap forward in confidence. I find talking much more tiring than walking so there are great benefits in this. Sarah is a very good walking companion as are John (apart from occasional lengthy delays when birds are spotted) and Roy (who much prefers cycling really.) But friends who you don't see so often are more inclined to want to do talking. So silent companionship on walks is what I offer to friends who want to visit and who are close enough for me to want to see. People are much less of an infection risk in the great outdoors than they are in confined spaces...

6th Jan 2005

Pretty well hairless now - was sadder than expected to consign it to the compost bin. It had got rather nice in old age (when I did it the service of having a good haircut) and never was a dye bottle needed to keep its chestnutty brown. Am about to take the megadose of steroids in preparation for chemo tomorrow. They tell you to expect not to sleep after taking them, and I didn't last time. Ian is here tonight so we'll probably sit up late and watch a film together. Still feeling fit enough to do some good walks.

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