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.