150. Pity party avoided

It would have been so easy this morning to indulge myself in one big self-pitying moan. Suffice to say, a change in brand of HT has not helped my tender joints and aching muscles. I shan’t be limbo-dancing any day soon.

I got diverted by reading Maureen Lipman’s cultural fixes from yesterday's Times and thought that’s what I’d do instead. So here’s an insight into the profoundly sophisticated cultural life of Jan Brown. Den has appropriated that section now so it’s my version - literature today:

Last book read: The Secret Commonwealth (Book of Dust volume 2) by Philip Pullman. I don’t know what to say really. First, physically it is a delight.

 The hard covers are black sprinkled with gold dust (the mystery of Dust is the theme common to both trilogies) and the dust jacket, when you study it, is wonderful: a dark train over a dark viaduct taking you to or from mysterious mountains. The book is over 700 pages and torture for my hands in their current state but I have persisted, balanced it on the duvet, my chest, whatever... I’ve been entranced even though I know it’s a Young Adult book (he certainly makes no concessions, in vocabulary or content), yet I’ve thought all the way through that it could be a lot shorter. I’ve enjoyed every word but I think he’s indulged himself. What I can’t forgive is the ending or what passes for an ending. The book just stops. No answers, no ends tied up - and I have to wait another two years by which time I will have forgotten. I am not ashamed to admit I was left with my mouth gaping in shock (anger?)

Then I read the author’s note and learnt that the new character introduced at the end was named after a schoolgirl who died alongside her family in the Grenfell Towers disaster. Her teacher bid £1500 for the privilege. What a teacher; what a pupil she must have been. What a loss. I cried. Then I wondered if I was crying because there’s always the remotest possibility I might not read volume 3.

Favourite book: Oh come on. I have read countless books, some repeatedly. As a child I wouldn’t have hesitated. It was Little Black Sambo, a constant joy to me. To the extent that, when it was removed from library shelves in the 70s, I dashed to Austicks and bought a copy which I still have. It never gave me any racist ideas. To me it was a victory of humans over the wicked tigers that melted to butter. I’ve read Pride & Prejudice repeatedly.

Maybe I’d settle for Hilary Mantel’s Bring Up The Bodies which I thought was even better (and more concise) than Wolf Hall, which I adored. I know all the history yet she held me riveted throughout - that is good writing. Kate Atkinson’s Life After Life is a contender though (once I got past the repetition and understood the point of it). Such a clever and thought-provoking idea.







Book I wish I’d written: Anything that hasn’t left me groaning or flinching, Usually those are the bad kindle choices and I have two folders: Avoid and Give Up. Until the arrival of the kindle, I made a point of never not finishing a book, no matter how bad (I do have a technique of selective reading to race me to the end though). Now I realise there are too many bad books out there and I’m not wasting my time on them. I would love to have written a book but, having done a couple of short online courses on writing, I realise I don’t have a book in me. I’m too lazy to discipline myself to write in such depth. I much prefer flash fiction and hope to extend it to short stories, but I have no dreams of publication (says me, having just bought my second copy of Compositions because it has my story IN PRINT and I can’t remember who I lent it to and who has forgotten to return it). Vanity? Pride :)

Back to the question: don't laugh - I’d love to have written Alfred Cobban’s A History of Modern France. It is to him I owe my fairly extensive vocabulary and adequate understanding so I could teach The French Revolution and France up to defeat in the Franco-Prussian War 1870 with apparent confidence.

An afterthought: It was terribly written (I skimmed it as fast as I could just to satisfy Eveline from tai chi who brought the copy to class and dared me to read it) but if I’d written 50 Shades of Grey I’d be rather well off now, wouldn’t I?



Book I never finished:

I’ve already said I made a point of finishing every book, no matter how badly written but there is one book I still hold onto in the hope I’ll find the strength to read it. The newer print of this includes a garish red circle saying The Controversial Bestseller. I find that sad. The book should be read on merit, not sensational recommendation. I bought it on recommendation of the Times when it was first published. Jonathan Little’s The Kindly Ones is different. It’s written from the perspective of a fairly hope-less doctor in Nazi Germany, obliged to join the party in order to practise medicine, called up and obliged to join the Wehrmacht and sent to the Eastern Front. It’s ruthless in its detail and I gave up, emotionally drained at the pointless slaughter of thousands of Jews, Romanies and anyone else of no value to the Reich, carried out with no plans, nothing logistical worked out, showing how mindless much of it appeared to be. The only comparison I can think of is the Russian Civil War where both sides committed such atrocities simply because they had no idea what else to do. I will read this book One Day.


Most influential poem: I’ve always said I don’t like poetry and have never written anything but doggerel in my life. Then Mum produced a couple of hand-made booklets of poems written by Janet Hellicar in 1M and 3M (age 11 and 13). Definitely not a poet in the making there.

I was won over by studying the war poets for O level and reading Up The Line To Death, an anthology I got from the travelling library which actually really upset me because of the illustrations. Again, I bought a copy as an adult and have it somewhere. For A level, I was scarred for life by Wordsworth’s Prelude yet I can still quote from Ode to Autumn and think it one of the most evocative things I’ve read.







To be continued one day...Time to read a juicy series of murders (my favourite genre)

149. Pondering on Christmas Eve

Last year, Christmas was cancelled. Today, Den and I had lunch out to mark the first anniversary of chemo#1 and did a bit of reflecting.

How quickly the year has gone (and yet how slow it felt).

How little of it I remember vividly without a prompt (It’s just one big blur of misery with little highlights).

How I got through some pretty awful things in a state of numbness (was it good or bad? We all find our own ways of coping).

How I was wrong thinking he was sometimes just waiting for me to die (Huh! Me wrong??).

How I experienced such a low level of fear yet he took on such a high level (a reverse of our usual dynamic).

How we never imagined that the end of treatment didn’t mean the end of treatment (mini-chemo 15 January; MRI yet to come).

That side effects can take a hell of a long time to go away and some never do (so we just don't know what each day is going to bring).

But it’s Christmas Eve (well, Christmas Day for insomniacs) so here’s my beautiful little Christmas tree, a gift from Abi and much appreciated:

Wishing anyone who reads this (have you nothing better to do, like prepare the sprouts or open the tin of Quality Street?) a very merry Christmas (Feliz Natal) or a belated merry Christmas if you read it later. 

Cheers (felicidades) everyone ❤️

148. Here we go again AGAIN

I plucked up the courage to ask the unasked questions on Friday. I guess nothing surprised me. Basically, I’ll go to clinic every 6 months before the zometa infusion and generally be kept an eye on. That’s for the next two years. That dreaded NPI score was reassuringly explained - it doesn’t take into account things like being HER negative and I think she said oestrogen negative and I came away a fairly happy bunny till I was brought up short by the realisation that, while I am HER negative (whatever it means; think it’s a hormone thingy), I am oestrogen positive top of the scale 8/8! Not so reassuring after all.

I did ask outright what my prognosis is and got a predictably waffly answer that my highest risk of recurrence is in the first two to three years so keep alert to: significant weight loss (that’s my normal); breathing problems and I forget the third thing. Maybe that shows how relatively phlegmatic I am about it. I still don’t understand how someone who falls apart at the thought of the dentist’s can just take in her stride the sword of Damocles that cancer has turned out to be.

We disagreed again about my side effects. Having seen a pretty gross video of my face on a really bad evening, right side sagging a bit, top lip weighed down under my teeth and me performing tongue twisters quite successfully by use of a very mobile bottom lip only, she could see something isn’t right. That and the fact that I can’t feel my insides (and I didn’t mention I’m still a bit wobbly - the proprioception is a bit off). She’s adamant it’s not chemo-related. Since it started in the days immediately following my first EC treatment And began to ease off after my third and final EC treatment, I think it’s too coincidental. Anyway, the upshot is that she’s packing me off for ANOTHER MRI, on the basis that the previous one was inconclusive. She then said she’d see me in 6 weeks time. I laughed and pointed out I had to wait 9 weeks to get an appointment letter for my last MRI so she said she’d make it 8 weeks time. Where’s the logic? On the bright side, I get another thorough health check 6 months after the last. On the downside, I’m not fond of MRIs but fortunately still have some lorazepam left. Thank god for drugs. How I never experimented with recreational drugs is something that bemuses me. I’m sure I’d have had much more fun or been way less uptight ;)

I don't feel I can write about Dennis’s counselling as it’s Dennis’s life but it’s really good to be able to write ‘Dennis’s counselling.’ A year ago, he would have simply refused. He’s going for a third session. Again he warned me that didn’t mean he’d do the full 6 sessions! I can’t imagine D in counselling but he mentioned it to some friends yesterday, to my amazement, so he obviously doesn’t have a hang-up about it. I don’t know if I’d like to be a fly on the wall. I’ll just put it aside as something private to him and hang around for any crumbs he might drop into conversation. I never ask. I do hope he doesn't interpret that as lack of interest!

147. Bottling out?

Tomorrow I have my routine appointment with Dr D and the oncology clinic. Last time, I said I had loads of questions but Dennis and I had both had enough of Cancer-world and needed a break so I’d save them. So the time approaches. Do I have the courage to ask those questions, the answers to which I may not like??

Ok-to-ask questions:

1. What exactly does “regular checks” mean? How often is ‘regular? What will happen (blood tests? scans?) For how long?  (Really I mean will I ever get free of this place!)

2. Has the test for a genetic link been done automatically? If not, should I have one or will it make no difference? (Thinking: is it safer to opt for a second mastectomy if I’m a strong candidate for breast cancer? Kind of preventative? Or would I possibly still get it, even in a boobless state? After all, men get breast cancer without all that breast tissue!)

3. Can the manufacturer/brand of anastrozole make any difference, as people have suggested? Which is the kindest brand in terms of the horrible side effects which make me feel I have reached old age long before I’m ready. (Honest, you should have seen me today, sporting spiky white hair and a very stylish long black parka from Jigsaw and walking like a penguin with chilblains!)

Getting-harder questions:

4. Is it still early days for me to expect the side effects of chemotherapy and radiotherapy to have worn off? (I’m not sure I want to hear that it’s not early days as that would suggest I am stuck with conditions I hate - I know you don’t want me to list them again!)

Questions I maybe don’t want to know the answers to but should:

5. That NPI 5.5 score. It applied after surgery and my prognosis for survival over 5 years was “poor.” Does it still apply or has each treatment increased my chances of survival/moved me to another category?

6. What is my prognosis, given that I’ve had every treatment provided? I know I had a reduced dose of paclitaxel - does that reduce the effectiveness of the chemotherapy in any way?

Back to ok-to-ask questions:

7. What do I need to do now to reduce i) the chance of recurrence ii) early identification of a recurrence? Or it it just up to fate?

Right now I feel that there’s nothing I can do about it so why worry about it. That’s not really me, considering I’ve spent about 75% of my life trying to control conditions so I could manage my life and have a tiny sense of safety. That still applies - if I feel remotely sick, I’m off, full gallop. After a year off, it’s back to normal service, which is kind of sad. I can now use a taxi and use lifts and multi-storey car parks, which is progress, but it’s not much, is it? BUT when it comes to this cancer business, I think and feel differently. I’m way more detached and almost phlegmatic (till it comes to treatment, then I’m just a wimp). Maybe tomorrow’s answers will change how I feel.

Being realistic, I know she can’t tell me there’s little or no chance of a recurrence, so I’m not going to be dancing home am I?

146. Bodysnatchers

I had a long crush on Donald Sutherland so the film comes to mind when I am feeling this is not my body. I want to go to the hospital next Friday and ask ‘Please may I have my body back?’ A swap must have been done somewhere along the line when I wasn’t paying attention. They will of course assume I’m referring to my absent breast :(

So, be warned - this is not for the faint-hearted.

From the bottom, working up:

Toes: on my right foot, every moveable toe joint is very painful. A sharp stabbing pain if I dare to use them, though my big toe seems to have resisted so far. This is, I presume, the effects of Anastrozole, the 10-year hormone therapy. Numb or tingling toe-pads, depending on the day (peripheral neuropathy).

Feet: the metatarsals on both feet protest with sharp pain when I walk. Consequently, I walk like a penguin, my feet flapping as I carefully try to walk on the outer edge of my feet (not inner because I have the toe-problem I had for years before - I just don’t fancy more steroid injections right now. All I fancy is Terry’s chocolate orange).

Ankles: both have a gentle tenderness (doesn’t that sound sweet) that presages the sharper pain in a few weeks?

Shins: no problem, just the sensation of nerves that feed into my toes. I know that’s the PN which will ease off ‘sometime.’

Knees: Oh dear, I have what I think are Old Lady Knees. When I bend them, they ache. Hopefully it’s the ‘sore joints and muscles’ side effect of anastrozole.

Legs: no problems I can see though I’m having two treatments that have ‘spontaneous fracture of the femur’ as a side effect. If I thought about it, I’d never get out of bed!!

Hips: no problem

Genitals: no improvement. Still prepubescent and even worse now that the healthy flush of fresh pubic hair after chemo has decided to fall out. Bald as a coot again (which I find so infantilising as well as looking horrendous, if I were inclined to look. Best not). I still have my stalwart fringe of top leg hair, which is all a bit incongruous. Makes me think of frilly aprons - don’t ask why.

Abdomen: still virtually numb. The joy is that I have had no IBS which used to plague me. The problem is I have absolutely no idea of when I want to go to the loo. The pharmacist has ordered in some palatable way of taking senna, since what the hospital provided required cutting into 4 so I could down the pieces in food, 8 extra tablets at night!

Tummy: requiring daily medication but I’m not sure why any more. All I know is I crave cheese and I can’t eat it without suffering.

Just fancied one right now - well, part of one...

Shoulders: still not as upright and held back as I would like. Perhaps if I did my exercises more often, that would improve. The back shoulder muscle is still tender from radiotherapy. That will improve ‘in time.’ Time is a great healer; I now understand what they mean by that. It’s a euphemism for ‘we have no idea.’

Chest: still tender on the microwaved ribs but the scar is nice and loose so I have better movement. I don’t miss my noob at all. I do hate wearing the prosthesis as I can’t get comfy in a bra - too constricting compared to the dainty wisps I used to wear. Movement is impeded by...

Arms: Only my left arm affected now. I have a solid wedge under my arm where my absent lymph nodes once kept everything in its place. I have to massage up my inner arm from the elbow to the armpit daily, more than daily, in order to get the movement I need to do my exercises. I can achieve the physio’s objective for me painlessly - but only after 15 minutes of preparation. My outer arm remains numb from surgery. Is my body meant to stay like this indefinitely??

Elbows: skin on the left elbow is permanently sore. It looks fine, there’s no dryness; it just hurts. This is from surgery 14 months ago. Again, it will improve ‘ in time.’ Bless time :)

Lower arms: Right arm improving from the onslaught of chemo but I have another stint in 5 weeks. It will ‘get better’ just in time for another attack from zoledronic acid flowing through. Left arm fine. OMG did she say something was ok?? Actually, I almost forgot - both wrists ache.

Hands: as with the toes, victims of the hormone therapy. This morning I lay in bed listening to the building contractors and gently bending and massaging each bloody finger before they were fit for purpose. That took at least 10 minutes. The fingertips, like the toe pads, experience numbness or tingling, depending on what the PN decides to do for the day. Not good for my latest obsession - crochet. Actually, that probably exacerbates it but it’s a new skill and I’ve several projects to complete so I’ll put u with the pain and massage.

Neck: absolutely fine, so I shall probably pull a muscle later on.

Throat: definitely improving from the effect of radiotherapy. Far fewer incidents of sore throat and gruff voice. Hooray, it was a bit awkward at times, losing my voice mid-conversation.

Mouth: my disaster area. I survived the dentist but have no faith in my teeth now. Every time I find a grain in my Weetabix, I have to check it’s not a bit of tooth or a filling. I am beginning to salivate better but still get parts of the day when my mouth is foamy - but it doesn’t nauseate me like it did so it can't be so bad now. Dry mouth comes and goes. However, my lips are no longer predictable. It’s like my face muscles collapse. I can’t catch it on a selfie (blush, I’ve tried) but it’s not just that I feel it. It’s definitely elongated and I have teeth indentations inside my upper lip - PROOF I’m not imagining it as was suggested. Dennis spots it before I’m aware of it sometimes - he’ll say ‘Is your mouth ok?’ God knows what he sees - the one-lipped woman??

Head: all fine. Hair beginning to lie flatter, nice and thick with just a little curl left round the neck and ears. All rather cute and still attracting lots of comment from people who want to make me feel better and don’t want to ask how I am. They pat me on the head or comment about my ‘gloriously thick hair.’ Beneath the curls, scalp good. I followed up Anne’s observation about her friend who was told she didn’t need to wash her hair ever again. I use running water and a lot of massage, then the tiniest bit of conditioner and voila, the curse of anastrozole (itchy scalp) has been cured.

Brain: oh dear. Not really the same as it was. I have problems with proprioception (I think it’s the PN). Yesterday I took a tumble against the bedroom radiator but, in all fairness, I was only 25% awake. My feet misjudge where to go just now and then - definitely it’s improved - and I am absolutely fine sitting down. I wouldn’t drive otherwise!

Sometimes I think my wiring’s been changed. I don’t feel things in the same way (physically). What I know is soft feels rough; what I know is rough feels like a sharp blade. Yet some softs feel even softer. Most things are basically tasteless. I can detect the salt, sweetness etc and my brain recognises a faint flavour which I sense somewhere in my mouth - but it’s not taste like I remember tasting things before. My sense of smell was always hyper so no change there.

I can’t type very well (I tend to type the letters in the wrong order or hit between the keys so I get double letters like lk or oi. Auto check has a busy time). However,

 handwriting is almost beyond me! What else? I do a lot of ‘what was I saying?’ My conversations trail off... and I forget things. I still rely on my mental lists which never were that good - now they are useless. Sorry Sheila. I remember every day to email you. I also forget. Oh, and I can’t sleep normally. I’m extra alert in the early hours and dead to the world in the morning. I plug myself into binaural beats to go to sleep but not till I sense I might sleep - otherwise I’d have hours of dreadful music. It works though.

So there you are. The Bodysnatchers took away the body I felt comfortable with and I’m having to adapt to this. All these effects should go ‘in time’ but by the time that happens, old age will have hit me and some of the things will be happening anyway - what Nanny Tait called the screws (rheumatism) and the hunched shoulders. Maybe I have the advantage of getting used to things early but really I’d prefer to resolve them and regain my body, quite happy with a noob so long as it behaves itself. Yes, apparently I still have to check it for lumps and changes!!