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!!

145. She got it!

Today, Dennis and I went to a joint counselling sessions at the Robert Ogden (Macmillan) Centre. Physically, you would have witnessed husband and wife laughing about parking confusion and the difficulty of filling in simple forms when one (me) could barely hold a pen and the other was as blind as a bat, having left his glasses at home. Had you been able to see the psychological dynamics, you would have seen a mother dragging her screaming child with his head stuck in the saucepan to the hospital. I’m not exaggerating.

Dennis actually agreed months ago when I asked if he’d come with me to some joint counselling about moving us forward. He’s conveniently forgotten that and actually said he felt he’d been highjacked into it today. Aaargggh.

We saw K, a trainee counsellor who volunteers at the centre and obviously has worked with many cancer patients and their carers but usually works one-to-one. D motioned to me to start things off so I did but pretty quickly, she seemed to sense the real issue and began to focus on D so, uncharacteristically, I sat back and listened. And D talked. Some I’d not heard before. In the summing up, she indicated that she felt I had enough emotional support through psychotherapy so she’d like to focus on D. FREEZE!

Don’t get any closer or else...

I could see the cornered animal look in his eyes and so could she because she suggested we come together and I withdraw after a short while. He agreed. But she recognised without either of us saying it that D is stuck with high levels of fear about cancer, that fear I didn’t have. He’s holding on to the bad moments instead of accepting they’ve happened but they’re over and done with. Whatever lies ahead, if there ever is a recurrence, will be new. Maybe I’ll not be able to dissociate like this time, maybe I won’t be protected from fear by my previous experience of different fear. It will be new.

So we have an 11am slot for 5 more sessions. He’s already saying he’ll only do one more. I can only hope he changes his mind but by now you my have a sense of the sheer stubbornness of the man.

Right now, I am trying to prove his legal existence, without the usual forms of ID. Nothing photographic, most utilities in my name...He refuses to accept that his desire to live “under the radar” just causes problems and, as I’m typing this, I’m wondering why I’m bothered. Why not just get on with my side of things (will, LPA)? Well basically because it’s a joint venture and I lose out if he doesn’t bother!

On top of that, I’m struggling with my phobia. It almost feels like something has been triggered and wants out. Not nice!

144. Come on, give me a break

Yesterday wasn’t great. I’m guessing I had a low reaction after the sedation the day before. Today was fine, apart from such wet rain. I stumbled through tai chi, unsure if my foot or my shoulder would cave in first (neither, I managed to the end). I then had such a spirited conversation with two and a half Johnson supporters that I forgot my reflexology appointment and arrived 15 minutes late - but it was worth it. Total relaxation, apart from the very tender toes.

So what went wrong? I ate my cottage pie, finished with a sliver of chocolate orange and lost the outer part of the tooth that was filled only on Saturday. My teeth have been much weakened by the chemotherapy - and I don’t know how the hormone therapy must affect them but I have a calcium tablet to take daily to offset it weakening the bones so maybe teeth get affected. I have a very high fluoride toothpaste prescribed but obviously it’s not enough. Is this my future? Bits dropping off at unexpected moments?

It wouldn't be a problem for most people but... yep, dental phobia too. Hopefully they’ll just shove in a temporary filling but I have two years + of neurosis about dental hygiene. Necrosis of the jaw sounds horrendous and, although Dr Nixon reassured me, moments like this bring out all the What Ifs.

Today I got the feedback on my two pieces of flash fiction resulting from that course a month ago. They were spot on. One was admired (with warnings about overdoing the qualifiers - you have to allow the reader to infer in Flash Fiction), one was politely torn apart and I agreed with everything said. So here’s the better of my stories to entertain you. The theme required was memories (400 words max, now expanded a bit), not a comfortable one for me, so I turned to something new for a change - fantasy.

Caveat Emptor

Ellen had long stopped noticing her route. She rarely looked in the shop windows nowadays. She side-stepped discarded take-aways on autopilot. Every pavement crack was predictable. Fortunate since she was oblivious to her surroundings today, obsessing over her humiliation. If only she could forget. No waking up, heart lurching with shame. No surge of adrenaline at a sound, a smell... Uncomfortable territory, memories. Some you could live with; others had to be buried alive and you just hoped they couldn’t claw their way back to the surface. 

She paused, catching an insistent sound beyond the traffic roar. Ethereal, soothing. It drew her inexorably down a musty alleyway, claustrophobic, redolent of distant pasts. The haunting melody pulled her into secret shadows, curling and coiling around her doubts. She glided unresisting into the haze of answers promised. 

The music drew her into a distant shop, its walls held tight by tiers of tiny boxes. She marvelled at such profusion. As she reached out to examine a label, a gentle cough halted her. She’d overlooked the elderly shopkeeper hunched over her desk, quill in ink-stained hand, boxes spilling around her. Her faded brown shawl and lace cap blended into the oak around her, worn to an ageless patina. 

‘May I help?’ 

Ellen was startled at the voice, an extension of the music itself.   

‘Sorry.’ She felt an intruder in a museum. ‘It’s just … the music…’ 

‘Twas yours,’ the woman softly explained. ‘Only them as needs it hears it. There’s something you wish to forget.’ She gestured to the shelves. 

‘You’re not the first. Look around you.’ 

Ellen looked perplexed. 

‘Didn’t you see the sign? “The Shop To Remember.” Strange name for a shop for them as wants to forget - but it’s a timely reminder.’ She offered the wisdom of centuries, hope and warning in the same verse. 

‘Forget,’ Ellen echoed. Instantly, she burned with shame. The audition. That contempt. “It’s never going to happen. You’re too uptight.” Because she struggled when he... She felt soiled. Dreams shattered. Yes, she wanted to forget. 

‘Indeed,’ the woman piped. ‘A timely reminder. But you’ve a bad memory to deposit so you don’t care.’ 

‘Well, today..’ 

The woman halted her. ‘I ceased wanting to hear decades ago. You just pay your guinea, leave your memory in your box and I takes care of the rest. You never get troubled by it again.’ 

‘How do I…?’ 

‘That’s my business. You’ll leave with no memory of what’s in your box. But caveat emptor. You’ll never get it back. Be careful what you put in. Folks try to find their way back, desperate for a clue. Be sure you want this.’ 

Ellen was sure, whatever a guinea was. She left in a haze, her load lifted, and followed the distant light through swirling silence into the city bustle. 

She sauntered uphill, gazing curiously at every shop window. She had no idea where she’d been or where she was heading. She lifted her face to the sun and smiled

143. Maybe not a good idea?

Strict instructions: Dennis is to supervise me and prevent me from using machinery or signing documents with the next 24 hours. I’m not sure if this qualifies as machinery and thank god for autocorrect but I did actually type Dennis is to supersize me! Maybe there’s sense in all these rules

This is dental sedation. Not the joys of being legally stoned for a couple of hours, no memory of the treatment or of the fool I made of myself immediately afterwards (once I tried to arrange work experience for myself, having spent the previous weeks obsessing about fixing 150 girls in the right placements). Today I have total recall of much but not all. I’d prefer to have zero recall but they prefer to be abstemious with the precious drugs, which already have had their buzz-factor removed! No memory of the injections and spreading numbness, which was good as that’s my trigger. But, while being cannulated again, I couldn't help wondering how I could cope with all that chemo and radiotherapy, yet still need sedation for small fillings. The progress was though 1. We went by taxi so my friends henceforth are freed from dentist duty and 2. I didn't experience even the slightest anxiety or nerves beforehand. Weird. No. Progress.

I slept on Dennis in the taxi back. I got into bed fully clothed and went to sleep. I requested a cup of tea and went to sleep. Now I’ve managed a cup of tea with a straw, copious numbers of dunked biscuits and I think I’m wide awake.

But not wide awake enough to remember why I started this and what I wanted to say. Maybe it’s that breast cancer doesn’t change the things you want to change. I’m still a frightened child at the dentist’s.

142. Same old, same old...

Someone pointed out that I wasn’t posting so often on here and they were disappointed when they checked and found no updates. SORRY. Chiefly it’s because all I can do is go over old ground, which must make for extremely dull reading. But this is how my life will be for quite a while, I believe. Also, some things tend to feel quite negative and you don’t deserve that.

Tuesday I went to The Haven for acupuncture and Rebecca, who obviously has a lot of experience working with breast cancer patients, said it’s “generally two years at least” before all side effects wear off and people have managed to get their head round everything. That’s two years from ending treatment so I’ve another 19 months to go. Another SORRY.

This time, the acupuncture doesn’t seem to have worked in a positive way but, so popular is she, I don’t have another appointment for three weeks. I’ve had several days of mouth problems. The dentist last week wondered if it’s muscular rather than nerve damage. I need to look for some face/mouth exercises - or ask the physio. I wonder if she knows exercises for the upper lip? All I know is, to quote my former pupils, it’s doing my head in. My face is no longer my face. By the end of the day, I can’t really feel my nose or mouth and it’s 9 months since I had the chemo that brought it on. Ok, another 2 years. I’m here and healthy. I can manage it.

I tried looking for a picture but my search took me to perfectly ordinary mouths, not one where the upper lip folds under the top teeth and vanishes (and I have a full upper lip - Myra Bristol called me Rubber Lips when we were 10 and someone compared me to Mick Jagger at school - these things don’t get forgotten lol). I have to consciously prop that lip over my lower lip right now - it can’t do much on its own, poor thing. So here’s my currently hiding lip and here’s my manually moved lip waiting to return to its former glory. Not a glamorous look, sadly. And yes, I’m having a duvet day! I look after myself gently.

                            

Actually, I’m wrong about the acupuncture. It’s had a remarkable effect on my toe joints and, although I padded there flat-footed because my toe joints were so painful, I’ve been walking normally. No pain. I really shouldn’t generalise should I? Next I need it for my finger joints though, to be fair, my current obsession with crochet is probably the cause of all that pain!

My chemo curls are growing out. I reckon another couple of weeks...Patches of hair are beginning to slope in the right direction which lends itself to an unusual look: most of the top still grows upright, both sides are now sloping downwards, and I have tight curly patches mostly above and behind my ears. You can just see the curls in the photo above but not the sheer willpower of the hair standing up on top!

Add curls round back and ears, imagine it colourless and this is me-ish

I’m still thinking occasionally about which camp I’m in. Is it going to come back? What am I frightened of? I know it’s the prospect of treatments and all the uncertainties, as well as losing control over my body again. It certainly isn’t death. I don't know why not. I’m also thinking of something a well-intentioned friend said - I’ll save those for another day.

141, Here we go again...

As happy as can be...

However, November is disappearing fast (with 2 dental appointments) then it’s back to St James’s, first to see the physio (I really must do those exercises) and a week later to see the oncologist, possibly mildly discombobulated by the election results - tho I really can’t see me staying up all night this time. Presumably the appointment is to see how I’m doing on anastrozole.

Well, the honeymoon period is over. The medication from the GP is still disguising some of the side effects - it’s rare that I get a hot flush and I still haven’t really got back to sweating like a human should so hot flushes are more skin prickles. My hair is so thick I don’t think I’d notice thinning. I am beginning to feel I walk like I’m 90. My feet hurt. The bones to be precise. I have joint pain in my metatarsals and phalanges (O level biology recall going on here - please be impressed) and I can actually feel my toe bones digging into the toe pads - surreal. I get cramp very easily, after which I have the sore muscle, but that moves around various sites (this morning, my calf) so it’s ok after the actual cramp. My knees are beginning to ache. I feel decrepit and walk like a Hobbit, flapping my feet. Where is the elegant sway I so carefully cultivated in the years after I was so profoundly damaged by being awarded the lowest possible grade for posture in 1962?? Thank you Miss Morton. Your spite (I rocked my chair) gave me great posture. But, 57 years on, I’m walking small.

Tomorrow I’m meeting some friends at Golden Acre Park. With all the falling leaves it must be beautiful. All I’m wondering is can I make it from the car park to the cafe? Sod the walk - I’ll sit and wait for them. And they say exercise is an essential part of warding off recurrence. First, one has to be in a position to be able to do the exercise and painful feet are an obstacle. See me trying not to topple in tai chi! Go swimming, I hear you thinking. Maybe, once I find a decent costume, but I shall swim in circles as my arm is still too numb or too sore to have much strength. But I will give it a go - I have my Aqua Knocker at the ready.

My instructor Colin on the left. I’d like to say I join the outdoor tai chi but I don’t

Insomnia is the most obvious effect. 1am, 2am, there I am with my brain more alert than at 10am. I don’t think about anything but I get very bored so it’s back to the book and the binaural beats till I drift off and wake later with earphones and glasses, a book on my chest and my head attached to my ipad - not great. I must say that, once asleep, I sleep like a log, Unfortunately, much depends on which and how many machines the builders are using. One day, they woke me at 7.40 (4 hours sleep?), trundled around and then buggered off home at 10 because it was too wet to work. Why couldn't they have decided that at 7.30 and given me some unbroken sleep? There are two good things though. I don't have to get up most days till I want to and I learnt a long time ago not to be bothered about insomnia. Tossing and turning is not me.

I thought I was doing ok. What a crock!

140. All clear on the Western Front

Geography was never my forte but I’ve worked out that, looking at me, it was my western front mauled by radiographer Martha, not my eastern. Regardless, the long-awaited letter arrived today. A simple statement that “nothing of concern” had been observed. Then it had the gall to go on to warn me that the mammogram isn't infallible. Well, what a surprise - yet everyone at the hospital tells me I must trust them. This really is a case of the left not knowing what the right hand is saying surely.

A huge load has been lifted. Not that I ever expected bad news - it was a healthy breast last year and nothing showed in the MRI. But that niggling fear was strong and I get the impression it’s going to be there every year. Not something I can share with Dennis. He’s relieved, of course, but he needs a lifelong guarantee on me before he’ll stop fretting now. And that’s something he’s never going to get.

Meantime, having been thinking about my Christmas Sales binge last year, I thought I’d celebrate. Off I went and browsed the racks and came back with a loaf and four pairs of knicks from Asda. I know how to live on the wild side. The great thing about it is they are size 10. I’m growing.

Tuesday, I had the luxury of two appointments at The Haven. I was booked in for an aromatherapy massage but there was a cancellation for acupuncture which I leapt on. All of this when, it transpired, I should have been attending an appointment with my psychiatrist who left a phone message suggesting she was worried I was too ill. Mortified doesn’t cover it.

Anyway, the massage didn’t happen. We started talking and next thing we knew, there was only 10 minutes left. Acupuncture was more productive. At least, I hope so. My mouth has been noticeably better, I’m salivating a lot more and I can only feel a faint tingling in my fingertips and toes. Please let it stay that way.

Painless. I have them in my face, tummy, wrist and ankles.

What I need next is to work out how to be comfortable in a bra. The two I bought are very restricting and chafe across my rib. I bought a comfortable-looking front fastener online that turned out to be tiny, even by my standards, so I can only use it with the Knitted Knocker. Fine, except gradually it sidles round to the weighty side - very uncomfortable. So now I’m on Amoena bras (Amoena made the prosthesis) via Amazon. It’s outrageous - we are entitled to buy mastectomy bras VAT-free. Amazon charges VAT regardless. I contacted Amazon who said they were obliged to comply with EU regulations and Amoena who said they had to comply with Amazon but they didn't charge for P&P to compensate. I’m not a tightwad. It’s a matter of principle - there must be many poor women who could do with the extra £5/6. I feel a battle coming on - not the Western Front I hope.

139. Silence is good, isn’t it?

Well, 8 days on and no recall letter. D has just walked in with the post, a circular in one hand and a letter in the other. He tossed the circular to me but held onto the other so my heart was in my mouth (strange expression, but it’s exactly how it felt). Turned out it was an election thingy. I’ve given him a bollocking for being so insensitive. Second this week - he greeted me the other day with “There was a phone call from..” By the word ‘call,’ my heart was in my mouth. The call was from his friend. I asked him to just say “Kevin rang” or words to that effect and now he pulls the post trick. Aaargggh. He’s not so well-trained as I thought.

Wide awake at 3am last night/this morning. It’s a strange kind of insomnia. There isn’t the slightest wish to go to sleep and no way I could con my mind into thinking otherwise. No anxieties, just daytime alertness. Thank god I don’t have to get up in the mornings.

Long pause. I’m trying to keep my brain away from cancerworld so I’ve proof-read a report. Now I’m doing this and then I plan to reread the article (ok, it’s in cancerworld) about moving on and not dwelling on it. D’s read it but he had nothing to say except ‘I don’t see why it needs to be read again.’ I’d emailed him the link and suggested he save it to read in the future. Sometimes I think he’s a lost cause - obsessed with my illness but not open to suggestions about how to get life back on track.

So just for cheery reading, here is yesterday’s view from the bedroom window. An 8am start is their concession to those who need their weekend.

And here’s a pic of where Kiera is (Darwin). No guesses for where I’d like to be right now.

138. I seem to be on a roll...

This should be compulsory reading for anyone recovering from cancer treatment or living with someone in that position: http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Don’t panic. You’re not expected to read it but there may be someone in that position who’d like to read it, hence the link. Plus I show off that I know how to do a hyperlink. The gist for me is that everyone’s expectation is that, now treatment is more or less over, you just get back to normal. However, in addition to all the reminders like the frustrating side effects that linger and really want to put down roots, all the medication, exercises and check-ups which keep you in CancerLand, there is an additional factor which you can’t escape from - the possibility of it coming back. So the article is very reassuring about how to look ahead regardless. It needs several reads from me and maybe the occasional revisit as the next paragraph shows.

I had the strangest dream last night which didn’t feel at all out of the ordinary. I dreamt I watched my mother open a letter printed on beige/grey A4 (St James’s Hospital paper), her face drop and then she passed it to David, my older brother, who had a similar reaction.

Each time I passed, their voices would drop. Eventually I confronted them because I knew the letter was for me, or about me, as I was probably about 15 judging by their appearances. I was furious with them for keeping the truth from me and used all the usual arguments like ‘It’s my body’ and ‘You’ve no right’ but they assured me I didn’t want to know. Of course, I sneaked the letter from Mum’s pocket and they were right - I didn’t want to know. I woke up to C’s words in her email: ‘What’s read cannot be unread.’

This blog isn’t the place for analysing ancient family dynamics but it was good to be in a dream where I was the focus of the attention, albeit unwelcome/unfortunate, where I felt I mattered because I always felt invisible at home. It wasn’t so good to know that my dreams are reflecting that belief that cancer is going to come back. Where is my ignorance and numbness that stopped me thinking about this stuff? Where are my protective strategies? Where is my confidence that it’s only a disease? Suddenly it’s become a bit of a monster, occasionally with a paw on my shoulder. Let’s keep it that way - manageable.

I’ve almost finished the FutureLearn OU course on Start Writing Fiction. Ok, I’ve done it three times now, in fact it may be four, but I really needed it to get me back into creative writing. Last weekend’s Flash Weekender course was a real stimulus so I’m all guns firing, raring to go, champing at the bit - just showing I can write really badly. However, I am working hard at not using the exclamation mark so liberally (it is quite painful - I feel an ache in my palm as I hover over the keyboard - but, as with the bc, I shall conquer it).

Take off the beanie and this is so me and how I write.

137. Torture

I am mortified to report that the radiographer today said she wished she’d had a video of the faces I’d pulled during the mammogram. I have never had such a painful mammogram!! Martha was a lovely brute. She grabbed my boob and slapped it on the plate. The equipment is more advanced than at Wharfedale so the top plate was like a transparent Perspex instead of the usual metal - to lull us victims into a false sense of security. See-through? Can’t hurt. Huh!
“Just stand straight please.
Move a fraction towards me.
Now please move your hips out a bit
Stick your bum out.
Now lean in.” At this point she began twisting and squeezing my boob for the best image.
“Keep that shoulder back.
Can you get that shoulder back further?
Bum sticking out please.
Now chin up. Up further. Take it right back (yanking head like an assassin going in for the kill)
Hold on....”

Plates firmly clamping my poor breast to the shape of a pizza, off she trots to press the button. Thank god there was a release button at her desk.

Anticipation is a terrible thing sometimes and that didn’t help but I am NOT a contortionist. I know she wanted to get as much of the breast and axillary areas in as possible and I really appreciate that but my posture has declined a bit and, though Dennis jokingly has occasionally said ‘stand up straight,’ I am aware that my default posture is nowadays a bit protective of my chest. It could be because my shoulder muscle (apparently the rhomboid) is still sore from radiotherapy but mainly it’s just comfort. So I can’t get my shoulder back like I could.

I am getting old. However, I was sitting next to a real elderly lady (I guess 80 as she said she was 40 in 1979). She was there because her breast implant had sunk. I know it’s ageist but it never occurred to me that an 80yo would even have an implant, let alone want it replacing, but it seems in 1979, if you had breast cancer, they removed the full breast. Hmm. Mum only had small partial mastectomies around that time but that was the new centre in Guildford. Anyway, after no other treatment and a 5 year wait, she insisted on a reconstruction. Good for her. She actually said ‘I was still single. Who was going to look at me like that!’ I didn’t ask if she found anyone. 40 years on, her implant has ‘popped.’ And she wants another one. Sorry, I’m taking the easy route - just get rid of the bloody thing. After today, I wish I’d got rid of both! However, I shouldn’t joke about it - tempting Providence.

So now what? Days of jumping when the phone rings, heart lurching when the postman comes, a letter in “two to three weeks” according to Martha, two to six weeks according to the leaflet she pressed into my hand. I will start relaxing properly once I get the all clear. Then I shall remember I had the all clear 18 months ago and I wasn’t all clear... Lose/lose. Such a great mentality. I shouldn’t joke: I came very close to an anxiety attack yesterday - I think too much has stressed me this week but it’s a good indication that I’m returning to normal. Unfortunately, it’s an aspect of normal I’d have liked to leave in cancer land. I’ll opt for this:

Post Script: 2am anastrozole-induced insomnia (plus anastrozole-induced jaw ache) and I suddenly remember the word I was searching for this afternoon was “bottom.” That is not down to anastrozole as far as I know but perhaps residual chemo-brain and a touch of age. Poor Martha didn’t call my arse (in Dennis vernacular) my bum; she called it my bottom. It would have been quicker to simply edit but 1. It proves the long-lasting effects of chemo and 2. I can’t bloody sleep so doing this is better than just lying there. Ok, turn off The History of Rock n Roll, plug in some binaural beats and read Thirteen Bullets till I doze off....

136. In the dumps

Tomorrow is my 1st anniversary mammogram. Only half the discomfort is the bright side. But there are many downsides:

1. I no longer have my protective/defensive shield of Land of Denial. I can’t reach the damned thing. So I’m not turning up numbed to the experience with that just-get-on-with-it mentality.

2. I hate mammograms. They are heartless torture and torment.

3. I can’t leave and think little about it till I get the expected letter saying I’m ok for the next three years, or in this case 12 months. I’ve never had the heart-sinking moment of reading a callback letter so I’m ill-prepared for a protracted and anxious wait.

4. A quick response could be a call-back. Yes, it could just be a quick response but I’m conscious of the realities now. It’s going to be as bad receiving that unopened letter as it is having a one-boob mammogram.

5. Call-back is very common in these circumstances - they don’t let the slightest speck of dust remain uninvestigated. I know this. It doesn’t make it any easier if I do get called back. Every time the phone rings, every time a letter comes through the door, I’ll be feeling slightly nauseous.

6. Logic tells me nothing could withstand the onslaught of chemotherapy that treated my whole body, not just the area of cancer. The chances of a cancer developing in my other breast are small anyway. Logic is currently a tiny voice in a (slight) mess of anxiety.

7. My ‘heavily node-positive’ armpit puts me at much greater risk of a recurrence. I can’t even say it’s too early for that. What will be, will be. Thus speaks my common sense. WHAT IF...? screams my emotions.

Conclusion. There’s nothing to do but grit my teeth and hope for a swift letter that says all clear. Easily said, less easily done. I confess, I am a bit scared and it’s harder than a year ago when I had a lot to be scared of.

135. The good wife

Oh soddit! It’s 1.30 in the morning. My husband has removed himself to another room where he seems to be vomiting constantly. Bear in mind my phobia and you can imagine how supportive I’m being. We’re apologising to each other - him for upsetting me, me for being unhelpful! With his refusal to go to the doctors and compulsion to see everything in terms of cancer, things don’t augur well in the Brown household over the next few days. Plus it’s the weekend. How do you see a GP?? By the time I convince him, all emergency appointments right over in Guiseley will be gone. Plus, could I allow him in the car AND drive safely?

Today I started Day 1 of my Flash Weekender course. https://www.retreatwest.co.uk/flash-weekender

Two great stories to inspire us, illustrating the points they wanted to make and two prompts: a 500 word story based on a fight or quarrel we’ve experienced and a 400 word story based on memories. Ok, I can honestly say I have never been in a fight and have only witnessed pupils fighting in my whole life. No one fought when I was at school and I never went around with people who fought, not even at university, tho I believe Dennis got into a lot of fights in his Hall of Residence. Fortunately he’d grown out of it by the time I got to know him. As for rows, I’ve never rowed (except online). I might get snide or bicker but I walk away from unhealthy argument. Can’t handle it. Dennis and I never row - how can I row with someone who knows he’s right and just smiles? Maybe a row will break out tomorrow when he refuses medical aid (I didn’t mention the pain under his ribs). Eventually I recalled a brief but spectacular row my brother had with my dad, embroidered it a lot and had a story called Sunday Dinner. I posted it just to get rid of the damned thing after reducing it from 750 to 500 words. Editing is a painful process.

Story 2 is A Shop to Remember. Memories for me are usually painful and I tend to see it from a negative perspective, No way was I going anywhere near my own memories. So I created almost a fairy tale (in the Grimm Brothers’ style) about a shop where you could, for a price, dump bad memories - with a caveat emptor: everything in the memory was permanently obliterated. People didn’t listen and left with no idea who they were - but they were happy. Hmm. Not a price I’d pay, I think, though I’m being tested to the limits right now. If only he’d fall asleep!!!

Thursday (is it only a day ago??) I popped in to see Liz and get advice on my burgeoning chemocurls. I could see she was itching to snip off the long bits, the original survivors. I’ve felt they’ve deserved appreciation but I could see her point and I was beginning to look at bit Hobbity (in my opinion) so I let her snip and asked her to cut into the curls to relieve the thickness a bit. Result: a huge smile, a huge hug and a very happy bunny with a hairstyle that looks deliberate:

Do you think I might sleep if I shove my head under a pillow?

134. Carry on camping

I’m beginning to understand this cancer thing. I call my blog “It’s only a disease” and I still believe that but I’ve spent a lot of time mentally pontificating on why we’re all so terrified of it, why we immediately associate it with a poor prognosis and a painful death but we don’t react in the same way to other diseases that can kill us in an instant.

It was a shock last weekend to confront my original diagnosis and no amount of reassurance, from myself and others, removed my visceral reaction. My struggling-to-survive intellect said one thing, my emotions another. I emailed C, my breast-care nurse, to confess my stupidity in Googling at 2am, I rang the Breast Cancer Now helpline on Monday to talk to a nurse, I talked to Kiera Sunday, I talked to Judy Wednesday; so here I am a week later later with a slightly less visceral reaction. However, it’s achieved more by avoidance than by rationalisation and acceptance. I know if I’m to move on, I need that latter.

I got through the last year in Land of Denial. It was a smart strategy that got me achieving a load of firsts and it served me well. But as the months progressed, I became aware that it was time to emerge and time to face what others face right at the start. Personally I think they make their lives more difficult and more fearful just when they need all their resources to cope with treatment but that sounds a bit smug considering you couldn’t have got more fearful than me - I was just afraid of different things.

Kiera repeated almost exactly what Den had said: when you start studying statistics, you are presented with data and you use it to prove both sides of a theory, showing that statistics can be used and abused as Mark Twain maintained. It kind of helped. The Breast Cancer Now Helpline nurse tried to reassure me but I could tell she was reluctant to tell me to ignore the initial diagnosis so I can’t say I felt much better. Then I got C’s reply to my email, reiterating her ‘lecture’ on statistics at our meeting on Friday. Interesting that it reassured me on Friday but not later, even though nothing had changed except the addition of one word to my understanding: poor.

C wrote “You’re wellness might be as long as it was ever going to be without cancer. Somehow you have to find a way of not letting what might happen tomorrow spoil your today. How do you do that? When well, enjoy well - put yourself in the most comfortable camp Jan. Which camp have you put yourself in just now? Yes, it’s coming back or no, it’s not. Or could you manage ‘well, it’s not there now so let’s enjoy camping.’ Of course, it might not be as simple for you now, you might jump between camps. Time is a great healer. Fear can be used in many different ways and many of them positive. No magic answer for how you feel...”

I love the idea of camping, of having one foot in each camp, of moving between the camps as my emotions require. So I guess that everything has helped me. There is a chance that the cancer may come back. There is a chance the cancer will never come back. The chance of the first is greater for me because of my original diagnosis but that still doesn’t mean it will come back. In the meantime, till I get my head round it or let time work its magic, I’ve booked an aromatherapy massage at the Haven for Tuesday, following my usual reflexology and reiki on Monday, so I’ll be completely chilled out. Later in the month, I have an acupuncture session booked (think it’s the same week as my mammogram, which I am not looking forward to, half the trouble or not) and am expecting great things from that.

Meantime, rather than bore you with the continuing saga of the building site, here’s something to make you smile. Yes, Dennis and I did rifle through debris to find the best, though quite why a 71yo and 68yo want conkers mystifies me. Maybe the best bit was being asked if it was true people used to put string through them. So here’s a bit of ancient history:

133. Space

In the good old days of teaching PSHE, or SPC as we’d been calling it for decades (Social, Personal and Careers, the new head being so ahead of the times), I used to teach pupils about personal space and how important it is to respect people’s personal space. We’d do the exercise where you stand face to face about 3 yards apart and then I’d chat away to the girl who volunteered and keep taking a step forward until she leant or stepped back away from me in horror. Invariably the result fitted the ‘keeping someone at arm’s length’ theory. Apart from this being entertaining for all but the poor volunteer, it served an important purpose for me - I’d taught 13 to 18 year olds and, in 1992, Leeds scrapped middle school and we had an influx of 11 year olds who’d come straight from primary schools where they received hugs from the teacher and would run up to the teacher in the playground and take their hand. Imagine how it was for me, a person with the personal armour of an armadillo, having to deal with these little creatures who would bring their work up to my desk and press themselves against my chair or my arm for reassurance. Hang their needs, I wanted to swot them away like annoying gnats.

Hence the lessons on personal space. I think the only person I allowed into my space was Dennis (wow, I allowed him?? Rephrase that). The only person who was part of my personal space was Dennis. I never hugged my friends. When they did a goodbye hug, I stepped away and left them all to it. I’m not sure when it changed - probably when I moved to work for Education Leeds’ Health team and became more confident, more sure of who I was and what my role was. People hugged, I hugged back. I learnt about social hugging and emotional hugging and learnt to feel at ease with it. Of course, it left me in a dilemma - I had colleagues I hugged, yet friends I didn’t hug. It took a long, slow process to move me into the hugging my friends mode of thinking and I still have friends I wouldn’t dream of hugging. Maybe they too belong to the Arm’s Length Brigade.

This is taking a LONG time to get to the point. I went to the hospital yesterday for 2 appointments, 12pm with C, the breast care nurse, and 1pm with D, the rehabilitation physio. So simple but, as usual, not to be. We got home at 4! Anyway, in the long wait sitting in the wrong breast clinic, I spied T, my adjuvant oncology nurse, at the reception desk checking her next appointments, so I sprung up and hovered till she was free. Then I thanked her for getting me through what had felt impossible at the start, all the support and encouragement she’d given me and the validation when I felt so awful. Yes, we ended with a big and meaningful hug which I initiated (!!) but, at the beginning, as soon as she recognised me, she exclaimed “Look at you!” and immediately started stroking my hair, ruffling it and exclaiming over how lovely it was, how she’d let herself go grey if she could be sure it would be my colour. I returned to my seat, Dennis grinning and me feeling like I’d had a bit of closure but feeling completely natural, no invasion of space at all. I guess I’ve been through a lot with T so it all felt right.

Maybe a slight exaggeration but close :) 

Then I had physio (OUCH). D got me stretching beyond the pain; she even massaged my noob - but I was so glad she didn’t discharge me - she’s not written me off. (Actually, it looks like she needs clients to keep her in work - I’ve never seen anyone waiting to see her!). After all this, we began the long mystery tour to find C, who was certainly in a breast clinic, only not that one. St James’s is a maze. We should have asked for directions but no, I knew roughly how to get there so we ended up in lifts, dirty stairways and dashing through the pouring rain to eventually settle for a cardio clinic (my heart was beating so fast I might well have become a patient) where the receptionist kindly told us exactly where to head. There’s actually a short bridge across on the floor above, which we used on my midnight tour of the hospital in February but I forgot. C was ready and waiting. We had quite a long session with me asking a load of questions that I’ve long put off. As we parted, she repeated how proud she was of my achievement (yes, probably said to all patients but it still means a lot) and then said “Is it ok for a hug?” So again I was wrapped in the warm embrace of another of my life-savers, this time the one who’d convinced me that I could manage chemo, maybe take a risk and definitely do it at St James’s.

Later, Lisa came round, all fired up about the building that’s going on and the probable cock-up by the planning department that may mean Miller Homes have to revise their layout. She wants me to go  with her to her meeting with the Chief Planning Officer next week (or soon) for moral support. Once I would have done a lot of anxious mental calculations before agreeing but nowadays I’m finding it easier to take ‘risks.’ As she left, another giant hug. That’s a lot of physical contact for someone like me and it felt a little overwhelming afterwards, in a positive but slightly puzzling way.

I then ruined the day. I left C feeling reassured, having got the answers to all my questions. It didn’t seem to matter that most answers were of necessity vague - statistics prove very little in the end. You could have a 98% chance of dying but be in the 2% who keep going. You might have a 98% survival rate but find yourself in the unlucky 2%. It made complete sense to me, in my let’s-brush-the-fear-aside way of thinking. Then, in the early hours of the morning, when my judgment was poor, I again broke my rule and I googled. As we’d looked through my diagnosis after surgery, I’d asked what NPI stood for. Nottingham Prognostic Index she said - and moved on. I didn’t ask what my score meant. It nagged at me so I googled. I wanted to cry so I googled some more and it was infinitely better but my mind keeps harking back to the first thing I read. My score = poor prognosis over 5 years. It’s not surprising I switched off from cancer and just got on with chemo. How can you deal with an emotional assault as well as a physical assault? Well, people do but I softened the edges a bit by blocking out the emotional bit. As someone said, never mind the hurricane; focus on riding it out and rebuilding afterwards. Spot on. In case you’re now anxious about me, further reading on the Royal College of Surgeons site and another equally reliable source (I’m not that daft) explained that the score relates to the position after surgery and you then have to factor in the impact of each treatment, of which I have four. So my odds become good.

Why do I hold onto the scary bit? Today I feel much like I must have felt when told I’d need to have chemotherapy. I can’t recall how I felt. It involved some numbness and a lot of fear about my phobias. Just how stupid can you get, ignoring sound advice you yourself give to others to ignore Dr Google? I’ll ring the Breast Cancer Care nurses on Monday I think. Just for reassurance. Hopefully the slightly sick feeling and the urge to cry will have passed by then.