Friday 31 January 2020

158. Confused

Just a quickie.

Today I took D for his counselling session (nowhere to park, yet again. It’s hard walking any distance when anastrozole is making every bone and every tendon in both feet yelp). The wait got off to a good start when I found that the acupuncturist had been stood up and so she was available for a chat. Even better when she looked at her diary after chatting to me and offered me four consecutive sessions in March AND put in an ear seed for the next few days.

The problem arose when a couple walked in and I recognised them. One is a former colleague and ‘friend’ - the sort you bump into and say we really must meet up for a coffee and then don't get round to it. She’s got breast cancer and is having her second chemo next week so they were at the centre looking for the kind of support they can get.

We had a short chat but it was obvious that, just like me, she wanted to be left alone. It was also obvious that, although she got through her first chemo well, she’s still terrified. When I joked about the EC treatment, she stopped me, more or less saying she didn't want to hear anything that was going to frighten her more. I just told her to get in touch when she was ready.

I feel really upset. I was close to tears earlier, finding out that someone I knew and considered a friend has breast cancer. Maybe because I can’t help. I know how to help and what would help but I also know that each person has to control their own way through all this.

Thursday 30 January 2020

157. All quiet on the Brown front

Every now and then I notice Dennis trying to drag me back to his reality which is not mine. Mine is: there’s always going to be a chance of recurrence. Don’t let it creep into your mind. Just live with it. Den’s reality is: three times I’ve feared I’ve nearly lost my wife and I’m struggling to deal with that. I don't get how she can be so bloody laid back about something so important. I have to keep checking.

I am 100% sure Dennis would deny this but that’s how it feels. This morning I didn’t feel great. Nothing I could put my finger on but sufficiently ‘not right’ to cancel my acupuncture. The moment I conveyed this to him, his face fell and the third degree began. What’s wrong? What’s different from yesterday? If you’re cancelling acupuncture, it must be bad (unspoken, but knowing looks). Before cancer, The most I got was a shrug! And he keeps popping his head round the door, checking on me when I’m happily having a duvet day, watching Goliath on Prime TV and knitting while my vit C does its trick and protects me from a would-be cold.

Anyway, I thought I’d move on to music, having just made a purchase on Discogs on behalf of my easily-deterred husband: the Shirelles’ Greatest Hits, an album he gave away in his early days and which has left a gaping hole in his collection.

Which instrument do you play? I don’t, much to my regret. I yearn to be a virtuoso on the piano. I can’t think of any piano music I don’t enjoy, and that includes jazz which I’ve never understood and therefore never appreciated. Thanks to a grammar school education, I know my symphonies from my concertos and I’ve a wide range of composers, some of which turn me to jelly, others which leave me unmoved. In hospital, I plugged into my Chopin and Beethoven, my Shostakovich and Mozart, my... all well known, nothing esoteric. I remember, in the days before the internet, taking weeks to identify Beethoven’s 7th Symphony after I’d heard the third movement as background in a TV drama (yes, I’m a pleb and proud of it). So powerful.

Which is your favourite instrument? Goes without saying, the piano. But I do love a good clarinet/cor anglais/oboe ie wind instruments lower than a flute and higher than a bassoon. I include the saxophone too, tho I know it’s brass, not wind. Oh and I love deep drums like those Japanese drummers and the bodhran; anything that gets into your bones. I bought a bodhran in my 30s but, as I found when I tried the drums once at Youth Club, I just don’t have that kind of rhythm. I can’t forget that scene with Father Dougal and his youth group doing Riverdance to the bodhran when the caravan started shaking (Father Ted, C4). But no, I couldn’t even manage that level. I might have managed the triangle perhaps.

Which is your least favourite instrument? This is a battle (silent I hope) between the recorder and a badly-played violin. In fact, most violins unless they are an integral part of an orchestra. Maybe I’m scarred by my brother’s talentless efforts when he started grammar school to play? Violin solos set my teeth on edge. Violins that know their place are a joy to hear. I think of them as comparable to me singing in the school choir at Guildford Cathedral: not good on my own but contributing to some amazing sounds like Handel’s Messiah.

What’s your favourite song? Since I recognise it from its first note, it has to be Marvin Gaye singing I Heard It Through the Grapevine. For decades, those introductory notes have made my toes curl and a swell of emotion leads to a smile.
Me and Hilary standing outside The Angel, Godalming, after a dance. Both shivering in our outrageous minidresses and, of course, no coats. Not a great memory when analysed but I always smile: she asked me to watch her bag while she nipped to the loo. A few police cars had just driven up. They searched a few of the boys, ignored me, then left. Out came Hilary, telling me ’that was a close one.’ She opened her handbag to reveal a bag of pills (the uppers and downers, as we called amphetamines and tranquillisers in 1969, that she and most of the crowd took. I never did. Honest). The gravity of what she’d done didn't hit me for years, not till I was teaching about the nature of friendship and used that as an example. The police would never have believed I knew nothing about it. They probably would have taken me off in the car along with two handbags, one of which was NOT mine - but how to prove it without dropping a friend in it? It was a shitty thing to do to an innocent like me but very Hilary - and I still loved her for her (on the surface) devil-may-care attitude. Back to the music - why were we standing outside The Angel? Well, I was desperate for a glimpse of Mick Clay. I had a burning and hopeless passion for him that only I knew about and when I hear Grapevine, I think of Mick Clay (who emigrated to Australia a couple of years later and is now an Old Man). We both wanted a lift back to Guildford too. That wasn’t ‘back to the music’ was it? Suffice to say, first notes and I’m back there.

But there are some close calls. I love Green Tea by The Green Pajamas  https://youtu.be/bb_8zp1vFmM  ; The Cars’ Drive; Jackie Wilson’s Higher ‘n’ Higher; Kenny Rodgers and Dolly Parton singing Islands in the Stream; The Poynter Sisters’ Slow Hand; Aretha Franklin’s Little Prayer, Simon & Garfunkel’s Bridge Over Troubled Waters (dare I admit to The BeeGees’ How Deep is Your Love and You Win Again? The drums again) They all have a memory attached.

When it comes to classical, it has to be Faure’s Requiem in D minor, In Paradisum (and didn’t I have fun tracing that to its source!). https://youtu.be/6-i1ESIRKdA. It doesn’t feel morbid, just glorious, and makes me wish I could sing.

Who is your favourite performer? This is an interesting one because each time we’ve managed to make it to a live gig, it’s been the support act we’ve enjoyed more - the Smoke Fairies, Bear’s Den. It’s also interesting because hormones need removing.
Otherwise, it would be a simple PAUL RODGERS. Watching Free in the Riley Smith, mesmerised by Paul Rodgers strutting that stage in his loons and tossing back his black curls, marks the point where I understood the nature of pure lust for the first time! The music was great too. However, I remember being blown away by the sheer energy and mesmeric showmanship of Annie Lennox in her Eurythmics days on TV and I’ve never seen Bryan Ferry perform badly on stage, even now when his voice isn’t so strong - he surrounds himself with top class musicians and the whole package is magic. So much so that I can forgive and forget the embarrassingly seedy and dated earlier days of Roxy Music.

What’s your favourite album? I’ve carried Sgt Pepper with me wherever I’ve gone since its release but I don’t think it’s that great. I’d probably pick from (in no order):
1. Roxy Music - Flesh and Blood
2. R.E.M. - Automatic for the People
3. U2 - The Joshua Tree
4. Taj Mahal - The Natch’l Blues
1. A pupil offered to lend it to me over one weekend. Early days of teaching when such friendly relationships were encouraged and you could talk music in a History lesson! I was hooked. My passion for Mr Ferry began and I still play at least three tracks regularly.
2. When I was ill and attending Malham House Day Hospital, I remember playing 2 tracks repeatedly when I did my homeworks- Everybody Hurts (of course) and Find The River https://youtu.be/KIJGlTu5sEI which I find haunting. Michael Stipe is a genius, for all his weird eye make-up.
3. Again, when I was ill and fighting back against the agoraphobia, I’d play this really loud in the car and sing my head off to distract myself from the creeping fingers of fear. They got me along that Ring Road, one set of lights or one roundabout further each time. There isn’t a weak track on the album, even today.
4. When I went to France, Easter 1969, with some boys from Charterhouse, Simon was the coolest (if anyone from Charterhouse could be cool in my eyes, blinded as they were by Mr Cool Clay and his button-down shirts). I remember visiting him where he was en famille in Lyons; he’d just bought this and played it to me. I’d never heard stuff like it.https://youtu.be/kGcGBmJTnKc I was hooked. I saved and saved for that album from my Saturday job wages. And I joined the Blues Club as soon as I started at Leeds.

Is there any music you don’t like? Having been with a record collector for 50 years, there’s bound to be. In terms of Dennis’ collections, it has to be between Richard Thompson’s She Twists the Knife Again, anything by Alex Chiltern (except Thirteen by Big Star, so I can forgive him for existing in the musical world) and a track by Stephen Fellowes called Life’s Too Long, which Dennis used to play almost every morning. He stopped playing music when I was ill, which made me sad, and hasn’t yet played this again. I shall loathe it but I so want him to get back to his music routine.

I’m afraid I broke my promise to myself as a youngish teacher that I would always stay on top of young people’s music and I have little idea of what’s around except stuff that catches my attention like Lewis Capaldi (love his self-deprecating tv ads for his album) and Billie Eilish and her binaural beats. Dennis downloads stuff I fancy like Adele, Rag n Bone Man, Coldplay... I think I stopped when Rap started. I didn’t know House from Acid from Dubbing and now my mind just switches off as soon as anyone starts talking in a song. And what’s this ‘feat.’ thing?? It’s like no one can perform on their own any more. As for what I consider the crime of grand larceny: R n B. Come on. R’n’B was Ray Charles and B.B.King, not people shouting at each other. I am musically ANCIENT.

And I got through this without including a picture of my beloved Bryan ;)

Sunday 26 January 2020

156. Making a splash

First cause for delight: my vision is much-improved and, more important, the dazzling corona I saw round every street lamp, every headlight and side-light, has GONE. I can see clearly to drive in twilight and darkness for the first time in three years.

I knew as soon as the second cataract operation was done that something was not right. Kiera drove me home and I was half-blinded by the lights. Every street lamp was a dozen times bigger. It was all too much. It did improve but I had to buy those yellow night-driving glasses to cope. One simple procedure for something else and, by chance, this is sorted.

Today I went to Cookridge Hall for a ‘swim.’ First it took quite an effort to get into my swimsuit - bought when I was under 8 stone. A stone heavier, it was a very tight squeeze! I had two worries. One, that my arm would be weak and I wouldn’t be able to do breast-stroke (the only stroke I can do, so what you might call essential). The second, that my aqua knocker (filled with the stuff they make plastic scourers from) might dislodge and begin to slip so it was visible - or worse, swim off in a different direction. Neither happened. I could do my perfect old-lady breast-stroke with complete confidence.

What I hadn't allowed for was the anastrozole pain. In my back, where I’d never noticed it. I managed in total two partial lengths of the pool! Fair enough, it was two more than I intended. I really went for the sauna (5 minutes) and the steam room (another 5 minutes), topped off by 10 minutes in the spa. All aches and pains completely eased away, albeit briefly. I have to go regularly. Maybe I’ll manage a full length without stopping because my spine aches.

I experienced complete outrage when I got to the bar. Bloody Starbucks has taken over. No decaf tea. No teapots. No cups and saucers. No milk jugs. No teaspoons. It’s a long time since I’ve been in a Starbucks but indignation didn’t cover my reaction. No decaf tea??? And no two cups out of one teapot!! OK, I’m not a great fan of change but...but... but what? Hell, does it really matter? No, but I had a little sulk.

Thursday 23 January 2020

155. So easy :)

Back to St James’s today to have my eye treated. It was so easy: 3 lots of eye drops and 40+ laser zaps and then a cab home. If only the rest were as easy and completely painless. I think the worst bit was having a lens placed over my pupil to hold my eye open - the numbing drops hadn’t quite taken. Ouch. After that, it was easier than being at the optician’s. Apparently I had rather a thick coating at the back of my eye so he has opened it up so light can get through. I broke my rule and Googled, on the principle that thoughts about life and death were unlikely, and found a clear explanation that was spot on - well done to the RNIB - so I knew what to expect. I just expected 2 or 3 zaps!!

Right now I can see out of the eye but I’ve quite a limited range of vision and I can’t see detail, like people’s faces, so I need to shut my eye when I look. Weird. Probably even weirder for the person on the receiving end.

I can feel a sense of excitement building up. Zometa - check; MRI - check; desired brand of anastrozole (long story) - check; eye - check. That just leaves me with physio on 6th and MRI results on 7th and then I feel I’ll be ‘free’ at last. I can’t explain it. It’s some sense that this is all drawing to some kind of conclusion, even though I know it’s limited and I’ll be back in the Bexley wing come June. Speaking of Bexley wing, look at this - 11 days after the phlebotomist had a go at me. Still the delicate little flower!

There’s more change afoot too. I bought TWO SKIRTS in the sales. Two because I’d bought and kept the very sleek and stylish black kilt from Jigsaw before I saw the perfect and cosy pleated skirt that I knew I wanted. But even one is out of character. I don’t remember when I last wore, let alone bought a skirt. Then I needed ankle boots to go with it and rebelled and selected ones with a (tiny) heel. I am determined that anastrozole is not going to turn me into a limping crock.

One Tai chi sweatshirt over one new pleated skirt in grey marl (looks black) with dinky ankle boots I hope I’ll be able to wear without limping. It all hinges on my theory that Accord will be the anastrozole brand I can tolerate and all my aches and pains will go or at least be reduced. “Aches and pains” really doesn’t cover it. Anyway, Asda has it in stock, my pharmacist has adjusted and redirected my prescription and I’ll pick it up tomorrow. High hopes...

Monday 20 January 2020

154. Salt in the wound

Considering the stresses of last week, I’ve been positive. So here we are, half past one in the morning, insomnia exacerbated by hand pain (hormone therapy) and by a contractor’s generator that sounds like I’ve left the tumble dryer on in the next room. I stand corrected: Dennis has left it on. Actually he hasn’t and it’s downstairs anyway but that’s the effect of the generator - a constant low thrum that you can feel in your body. Not even the supposed noise-excluding earphones can exclude this. My neighbour has contacted the out-of-hours number to complain but nothing will be done. I’ll ring tomorrow, get voicemail as usual and leave my third complaint. Noise is allowed from 7am (which is bad enough) to 6pm and is constant. No one has ever mentioned 24 hours a day.

I already was very upset. I’d had a wonderful reflexology/reiki session and was mighty chilled, then I drove up to see a new structure ahead of me, tucked behind the garage. I knew it was coming but it was still a shock to see foundations where the large detached house will be, towering over our garage. So then curiosity hit in and I went to the back of the garden to face what I’ve been trying to shut out: the construction over the fence. I cried. They’ve laid the foundations of a house and it is way closer to our boundary than the plans indicate.
This doesn’t look too bad (I couldn’t get the angle right to capture the distance) My arms were resting on our fence. That next fence is perhaps 1m away, then the grassy bank is perhaps another metre or two. It can’t be more than 10m to those foundations and five of those are the landscaped buffer! They are cheating, sneaking a bit here and a bit there to get more housing in and I can’t see how it can be stopped. Lisa has a solicitor looking into it as her situation is even worse but it doesn’t look good. And still the parish council boasts of how successfully they’ve negotiated with Miller Homes. They should try speaking to a few residents. Noise 24/7 is almost debilitating.

I just want to move. We can’t. I’m not up to it, we can’t downsize and the value of our house has plummeted. Woodview? I shall be able to stand in my garden and see in every window of this house.  We are supposed to be two gardens apart, with a 5 metre boundary between. Huh! And there’s a pair of semis to be squeezed in, plus 4 further detached houses. I feel sickened. If you’re interested, heres’ the plan. Ignore it if you want - it doesn’t mean much to anyone now:

Monday 13 January 2020

153. Safe from vampires

One of the great benefits of chemotherapy that is overlooked is how unattractive one’s blood is to vampires.
Of course, you need to have some living nearby, who are short of a regular supply, live by the old rules and I do have to ask myself why they would look at someone skinny like me (though I’m proud to say I’m heading towards 8st 10 now, much to my delight). Oh and they can’t be taking part in Veganuary either.

Today should have been very simple - in and out in 30 minutes. Sadly but inevitably, I didn’t receive the paper work for having a test locally and ease the bottlenecks but they decided it would be fine to do today’s treatment based on December’s blood results, only a few days outside their maximum period. So we went straight in, after I’d taken my first lorazepam  :) Then we got ignored for maybe half and hour. Then the nurse came to prep me and she had three goes at getting a cannula in. Dennis was looking the other way for a long time; I just watched curiously to work out what was so difficult. The first nurse said it was valves in the way, the second said my veins crossed in an unusual pattern (well, of course!) but she got it in and strapped me up before I could say allergic to sticking plaster! I’m hoping I don’t react this time. I didn’t bother with the second tablet, I was too chilled by all this palaver.
I’ve never had a cannula in my thumb before
In goes the saline, in goes the acid, then in goes some more saline - all good fluid which I’m lacking. Then they needed to take a blood test but they couldn’t use the cannula vein as that might be contaminated. The nurses could get the needles in, they just couldn’t get any blood out. Am I that desiccated? It’s not so long since my blood spurted over a doctor, it was that thin! So, with one incipient bruise and a couple of failed pinpricks, I was given the paperwork to see the phlebotomist, She was intrigued and spent ages examining the routes my veins took. Then she selected a route never used before and I watched a tiny lump ballon on my arm about an inch away (turns out the veins crossed paths)while she extracted one phial and said that would have to do. When I said I’d had three drinks, she said that was nowhere near enough. Blimey, that was a good day.                                                    


Problem: I need to be cannula’d for the MRI on Wednesday. They’ve nowhere else to work so good luck there. They’re only allowed 2 goes and I NEED the contrast dye this time so the nurse reckons I’ll be packed off to the phlebotomist. Schedules are tight. Why not send me there automatically, knowing I’m a difficult person to get into. Strange considering my veins spend most of the day vying with each other to see which can stick out the furthest that they actually aren’t accessible.
Maybe this little chap can help (if he can manoeuvre through the battle site. Sorry, building site).

Friday 10 January 2020

152. Oh what next??

THREE visits to St James’s next week. Three visits in 5 days. Ok, one is D’s counselling but nevertheless it’s making me loathe the place. Monday is the zometa infusion (all afternoon since, despite my asking three times for the bloods paperwork, it didn’t arrive for me to have my blood tested locally so I’ll start with a simple blood test and then have to wait for at least 90 minutes for results before they can prep me for what, in the end , is a 20 minute treatment). I try so hard to help them, free up a bed/chair for the next patient, but they can’t deal with the paperwork :(   Then, if last time is anything to go by, I’ll be wiped out for at least 3 days with fatigue. However, I have to get in for the MRI on Wednesday. I can hardly ring and say I’m not well. People seriously ill still drag themselves there for their MRIs. I have to man up. Whoa, I don’t know where that came from - I hate the expression (too sexist for me).

On the bright side, it gets the MRI out of the way and leaves me two weeks to recover before going to see Dr D for the results and being told nothing can be detected. Ergo, it IS chemo side effects and Jan tries hard not to poke out her tongue and say something childish like I told you so. However, hold your horses, Jan. I don't have two weeks clear. The following week, back to St James’s to have my eye zapped, something I put off in November 2018 because I thought I’d have started chemo by then. I shall be able to see clear as daylight again, instead of having a foggy lens. I can’t even get cataract replacements right- something has to go wrong.

The search for the elusive HT tablet continues. I have to continue with my existing brand for now as Accord can’t be obtained so I carry on unfolding and massaging my poor fingers several times a day, do bed cycling to get my knees moving and enable to walk me to the loo and just hope my feet aren’t agony. Today my feet were quite relaxed but my fingers were almost locked when I woke up. Weird. Pretty painful too but not unbearable. I’ll be a martyr for now and just wince delicately at intervals. Unfortunately, I sit and massage my hands without thinking now because the pain/discomfort is continual. I must look like Uriah Heep!

STOP Jan. This is close to the pity parties you wanted to avoid. Time for something uplifting.


If I could, I would send every one of you a copy of this book. It’s hard to describe. As it says in the introduction, having congratulated the reader on starting at the beginning, it’s for anyone from 80 to 8. I’d say 100+ to 3, if it’s being read to the child. A lonely boy befriends a mole. They befriend an injured fox. They befriend a skittish horse. In between, they pontificate ...


I was choked with emotion all the way through (5-10 minutes in the car wash) and I’ve read it again a few times. I even got D to read it and he even told me what he thought - or rather what it made him think. Who is this new man?? Buy it, buy it for yourself, for you friends, for your children, for your grandchildren. It’s a lesson in the innate goodness in everyone and a view of life we can all share. And there are a couple of beautiful illustrations. Look for the horse during the night..





Saturday 4 January 2020

151. Happy new decade

I guess if I’m pedantic (and I can’t be because I just started a sentence with ‘I guess’), it’s not actually a new decade till next year - but we must have exhausted the issue at the turn of the millennium and, despite my History training, 2020 is a new decade for me. Not that it makes much difference.



Yesterday we trundled off to St James’s yet again, this time for Den’s counselling (he is so getting into the swing of all this - he even told his ‘7am Friend’ Suzanne about it this morning, it seems). Had it registered that this would mean an additional 6 journeys to a place I am, for obvious reasons, not overly fond of, I might not have suggested it. However, the benefits to him (and therefore us) outweigh the frustrations of finding myself on the wrong bloody road in Harehills every flipping time. I used to visit so many schools round there and I used to travel through it on an almost daily basis when I was an adviser, I thought I knew the place. However, narrow residential streets are no longer through routes, many are one way and one of the roads has a concreted barrier between the two lanes, the only way to try to control the crazy drivers of Harehills, who drive to their own version of the Highway Code. Yes, I got lost again. Fortunately I still carry my trusty but outdated A-Z and, after a couple of hairy manoeuvres, managed to get back on track and enter the hospital at the right place.

I sat in peace and quiet for about 30 minutes, then the crowd came out from their Moving On course and I found myself in conversation with three women, all trying to convince me I must do the Looking/Feeling Good course. I think the decisive factor for me was when the woman with very black tattooed eyebrows said her eyebrows had been as pale as mine before. I actually had used my eyebrow pencil that morning, a relatively new and post-chemo custom, so I was pretty insulted. I shan’t be going. I really have had enough of cancer and the thought of a day being jollied along when every bone in my hands and feet hurts and my knees feel ancient, all for a bag of very appealing goodies like Mac eyeshadow and Kenzo perfume, just lacks any appeal for me now.

So what does 2020 hold in store for me? Acupuncture and a blood test next week. Zometa infusion the following Monday (more chemo, but good for my bones). An MRI somewhere along the line (I have the appointment date for getting the results, but no date for the actual MRI) and a referral to Neurology. I wonder if I changed oncologists, I might get one who said ‘You know what, you may be right. It may not be a coincidence that all this muscle misbehaviour started after the first week of chemotherapy so what you are experiencing is side effects.’ How good it would be to feel I’m being heard rather than just referred on for more medical procedures and consultations that cost the NHS money.

In the meantime, I wait till my pharmacist can obtain Accord and I can give it a go as my hormone therapy brand. I’ve reverted to my Teva after a week on the replacement brand that just made me so much worse. If Accord can’t be acquired and/or doesn’t do the trick, I face the dilemma: living with a lot of pain and discomfort that will stop me doing stuff I’d like to do (you should see me walking down the stairs at the moment - I’m laughing hysterically inside while I’m clutching the bannister without using the outer part of my hand (too painful) and walking like John Wayne); or coming off anastrozole, known to be the most effective drug in reducing the chances of recurrence, and trying something different, with no guarantee that I won’t get the same side effects. It’s ‘kinder.’ Great. That’s just what I was told about paclitaxel and that was mini-hell.

Back to the start of the new decade. Last year, I assumed all this would be sorted and behind me. Nope. No chemo, no radiotherapy, but otherwise, no different to 2019. Grrrr.

Oh cheer up woman!