Ok. now that Mr Oncologist wanted to consider me for the chemo-remainers-club, I decided I was going to play a bit of hard ball.
I have a theory of Big things v Small things. in this journey I tell myself to give my undivided attention to the ‘Big’ things.
So, I wrote a letter essentially stating that the big thing (tumour) will likely kill me faster than the small thing (lung mets), and so I pushed hard for starting chemo-rad. And blow me away – when we met next he told me that it could now be an option.
Yee-Haa!
So although I’ve just done chemo #6 I’m hoping I will be granted a bit of a reprieve and perhaps be put on a reduced dose of folfirinox, or something else. For, after all, I probably will have radio-therapy side effects to substitute.
For my readers on the blog, I thought I’d let you know that I was approached by several editors amongst our local press, and asked if I would do a column (for one) and a one-off article (for t’other). They both felt it would give their readers some inspiration. I guess having someone outspoken about chemo services on the NHS and enduring the cancer journey makes interesting reading. Aside from my (hopefully) enduring positivity, I hope I have shown that you can still retain one’s humour and personality, whilst the machinery of the cancer unit reduces you to slowly moving parts.
On a different note entirely, it was very special to be at the wedding of the daughter of a special friend. 5 months ago I thought I wouldn’t be here to see the day. But – we made it. And what a special day it was. Takes you straight back to your own wedding, which felt like a million years ago. But one’s grown up children bare testimony to the fact we cannot deny the passage of years, nor the journey we have had along the way. Maybe – if I get some help from G-d who decides everything – I might live long enough to see one of my elder children get married too.
Its been a hectic week or so with all the younger kids on half term. Busy with arts and crafts and a bit of Dancing with Louise. Thanks to those lovely people who thought of me and helped make their half term so special.
Nonetheless – for me – hospital and other appointments keep going relentlessly.
Without further ado, we’re moving on to cycle 7 now.
I was hopeful for one of two things in my chat with the oncologist:
Question: How are my results following the triple CT ?
Answer 1. Well, great news! It’s shrunk and looking better. I will chat to the surgeon and see how you look for surgery.
Answer 2. Wow. I keep looking at the report. I can’t see where the tumour was. It seems to have…. vanished!
The answer I got was:
Ummm. It hasn’t shrunk. It’s still the same size. Pretty much. But it’s good news – kind of. Some tumours keep growing throughout the chemotherapy. So you’re one of the luckier ones.
Ahem. If we don’t shrink the primary slightly away from venous area, resection may be off the table.
So – I ask “how to shrink if chemo isn’t doing much?”
“Adding radiotherapy might do it, but we won’t put you forward for that as (we believe) you still have mets to lungs”. Aaargghh.
So we plough on. But he plumps for me to have 6 more chemos to add on. So that would make 12 in total on folfirinox.
Yippee, my most dreaded cocktail
I wonder if I’ll have any hair left, any sensation left in my hands, which are really suffering.
I already have almost zero capacity to taste food, and am overdosing regularly with salt to try and taste anything. At this rate I will more likely die from sodium toxicity ….
Coroners Report
cause of death (options)
delete as appropriate
1. old age
2. heart attack
3. sodium toxicity
4. pancreatic tumour
___________________________________
By this stage I can barely feel my hands from the side effects and am living on extra Gabapentin to stop me turning into the Ice Man.
Seriously, by 11am each day – like clockwork – the current meds have worn off and frostbite has set in.
I tried to think of a medical analogy to this condition and plumped for Raynauds syndrome. My beloved composer Sergei Rachmaninov suffered from this as an adjunct to his Marfans syndrome. Boy – living in the frozen wastelands of Russia I bet he suffered a-plenty.
My neuropathy is so awful that almost anything is enough to set it off.
○ Closing the front door with the metal handle, opening the car door. Touching the steering wheel.
○ Washing hands and then being exposed to the ambient room temperature.
○ picking up metal cutlery, glass
○ and a great one – the throat. Breathing in air in the street sets off my slurry voice. Sound like a rampant alcoholic in a mere distance of 25 metres. Cute.
Then there’s the awful pain which frequently accompanies the hands. Touching anything is a further struggle. By this stage you can’t cope and need to reach again for the meds.
The partial solution is to permanently wear gloves ! I’ve been trying to find some rabbit fur gloves for my ailing hands as it’s the only alternative to morphing into a snow fox.
Busy week. Writing music scores for my gorgeous girls choir. They are singing in a festival in 10 days, and its my job to get them sounding more and more like professionals at every rehearsal.
I’ve been doing this event for 12 years and every year we push the musical bar higher. I worried slightly back in October that I might not be alive at this point, so thank G-d I AM !
Met up with an old friend a week ago who is a medic of some recognition. Over coffee we talked about my intention of tandem parachute jumping for charity. His view was this might be a mistake as chemo can weaken your bones, and potentially a bad landing at 20 mph could see me land up in orthopaedics/ trauma. (Bit of a setback if I’m still hoping for surgery at some point!)
I’d do almost anything for a bit of quiet me-time, but being potentially hip to foot in plaster of Paris doesn’t quite have the je ne sais quoi of a hotel pampering break.
So maybe something else?? All suggestions welcome.
Ok. Now moving on to cycle 6 so time to close on this one.
Back in the 90s I decided to be brave and take a posting half way round the world. The job was advertised in the TES and I was then interviewed by an academic in Leicester (I think) who was a close colleague of staff members from SA. I recall having an intensive interview plus then having to give a recital to impress them that I was a genuine musician. I passed the test [Bach-Busoni was on the menu] and came back to have a conference style interview with the music department I would be joining.
I packed up my little flat in Aberdeen and gave lots of stuff away. I remember odd things – like being sad I had to put my giant avocado plant into ‘foster’ care. I had grown it from a stone to a plant some 3 foot high and it was the first and only time I managed this horticultural feat.
I gave away lots of shoes and clothes – I suppose on the premise I would never return to Aberdeen. Somewhat premature, probably, as of course I would still need warm clothing at some point in the future. Anyhow, I trimmed and thinned my clothing down to 2 large suitcases, which I was taking with me.
When I arrived in Johannesburg I was promised staff accommodation but after being collected by the warm and friendly Head of Music, Walter Mony, at the airport, I was deposited at student halls, which was not at all what I had expected. Hundreds of students milling around, aromas of unfamiliar food brewing in the student kitchens, and very loud music 24/ 7.
It was quite intimidating, but I remember vividly the thing which struck me from the first day was how early and quickly the sun went down. I was to realise that summer or winter- there wasn’t much difference. Having left a British summer where it wasn’t properly dark until perhaps 10 or 11pm, it was unnerving to see night fall at 4pm.
Of course ….. you would have to go out. But I had no local knowledge, awareness of districts (where to go, where to avoid etc). so evenings out posed a bit of a risk.
I then took a lodging room out near Sandton, and was further spooked by this relatively expensive suburb which had zero street lighting at night. Now – even as a novice resident – I realised there were additional risks. I stayed there only a short while, before rooming in Saxonwold, with a couple whose daughter was studying in the Uni, she played viola. I taught her piano and so naturally also accompanied her for exams.
My teaching studio had an old grand piano, and I petitioned the Head to provide a second piano (upright) which was provided. This is a common arrangement in music schools, where the teacher sits at the number 2 piano to demonstrate where necessary.
One of the cultural hiccups I quickly learned was the social hierarchy. I had many black students on my list, which was fine, but each week a certain group of students failed to turn up for lessons.
The Head put me straight.
Jacqueline – you’re white, you’re female, and you are young (compared to the much older members of the department). They don’t respect people like you. If you were male, black and older, this would make a difference. Welcome to South Africa!
The campus was a huge complex, with a vast array of traditional and quite formal buildings. Many departments were housed on the west campus – architecture, engineering, science, languages, and music. Music had an additional space in an atrium, where beautiful concerts could be held, although we had the engineers upstairs who would peer over the balcony, and be suitably tempted to stop and listen to our artistry and cultural pleasantries. There was additionally a Great Hall, where sizeable audience seating could accomodate orchestral concerts, competitions and the like. Many of those concerts I would perform in, sometimes with students, sometimes as a soloist.
I remember there was a little pedestrian bridge which linked one side of this campus to the other, and one of the singing students [Adam Kirkaldy, if I recall] managed to drive his little Morris Minor across, narrowly averting a paint job each time as he skirted perilously close to the rails of the bridge. Was a feat worthy of a medal. Or a YouTube!
Travelling around the city saw me be naively adventurous. I travelled on the local buses (well if I did it in the UK I couldn’t see the problem anywhere else). I was the only white person on the bus, and got some very strange looks. On another occasion I took a black taxi – not the London cab variety, but the minibus African vehicle (in all colours) many of which were engaged in brutal taxi wars, where passengers or drivers were occasionally thrown head first out of the vehicle as a result of some dispute. I travelled in these a couple of times, before twigging that as a solitary white female passenger, the personal risks were too great.
So finally, after I’d been there for a while there was no escaping the necessity to become independantly mobile. At first I couldn’t justify buying a new car, so I rented one from an acquaintance. It was a fairly clapped out blue Ford Escort, and it just about made the daily run to campus and back. I remember I was staying in an area very close to the university and would frequently hear cars backfiring in the neighbourhood. But it wasn’t cars – it was gunshots. I was just a bit new to ‘get it’. I remember one day being parked in a time controlled zone (although I was usually gone at crack of dawn) and the blessed car wouldn’t start. Not having RAC or equivalent cover, I rang my friend Paul, an optometrist who came with his brother and they tied my front bumper with a long, slack rope to the rear of their red pick-up truck. This was a non regulated manoevre….. and I recall as they crossed a junction rather slowly, a vehicle drove straight between us and split the rope in two; narrowly missed cutting the bonnet in two. It made for an energised and heart racing start to the day. I don’t recall where we left the Escort but it was a bit like the Jeep.
Paul Walsch kept me in good ocular order and excellent eye frames, and was extremely well respected. He had a practise in Rosebank Mall and he and his brother would occasionally pop over to my flat to see how I was settling in. They commented that I was in a slightly risky part of town, but were impressed by my tenacity in staying put. “Must be ‘coz she’s Scottish,” his brother said.
I recall a very sad occasion when I had gone for an appointment and found Paul in a very distressed state. He shared that his brother (rather an adventurous type) had gone sailing round the western cape.
But something untoward had happened and communications had ceased suddenly: when the search party had found the boat, there was no one on board. The probability was that his brother had been murdered and thrown overboard by pirates – and we were not talking about the Jonny Depp, or Disney Bluebeard variety. These were the shoot you in the head, and ask questions later, type. It was nigh impossible to console someone from such a horror, but I tried.
Further excursions with my little rental car took me out into Randburg and hitherto unexplored parts (at least by me). I found an incredible dressmaker, who cut me beautiful clothes to my specific tailoring specs. I went to her for a whole array of clothes, including concert dresses for performances. All were stunning. [years later on a return trip I had her make beautiful clothes for my eldest daughter]
She was to clothing and materials what Glenn Gould was to the music of JS Bach. Genius!
On one of my return trips to town, I stopped at a BP petrol station, where a helpful attendant was always available to fill up the car. This usually came with the mandatory inclusion of a windscreen wash and wipe. Regardless of whether you wanted it done. I acquiesed, and to my absolute horror, watched the chap drop his rag on the concrete, and then resume wiping the screen. As he did so my mouth fell wide open, and I saw the huge deep scratch winding its way from east to west. I leapt out of the car and pointed to the windscreen. He stared blankly and said “my tip!” I cannot remember my exact words but suffice to say it was phrased in the negative, and to effect that he should be paying me a fee for the damage to (someone elses) car. I saw the damage every time I looked out of the screen, but mercifully the owner was either less observant or interested.
After some more months of running the car, I felt it was time for an upgrade. I went to a snazzy VW dealership and persuaded my self to buy a Citigolf. Just like a Golf, but a little smaller. As was the vogue at that time, it had a complete pull-out radio kit. One less thing to steal or get killed for, to be honest.
One evening, I was going through to Pretoria after classes to rehearse the Mozart piano Quartet K478 (G minor) with some colleagues. Radio playing happily as I went on my way. No sat-nav, only a map which you plainly couldn’t read in the dark.
I was told to take the N1, R21 exit for the university, however the name given wasn’t accurate and I missed the turn off. As the next exit came into sight I realised I was well wrong. At a robot (traffic lights) there was a small car, revving backwards and forwards, like the driver was possessed. But I leapt out anyway to approach the driver, as the lights were still at red, I was alone, and I was going to be late for our rehearsal.
I knocked loudly on the drivers door. The driver screamed through the window at me….. “did I not know where the heck I was?!”
I replied, “obviously not, or I wouldn’t have gotten out to ask him.” He shouted I should get back in my car and follow him. Which is exactly what I did.
He approached a gated community of apartments, parked his car and ran up a flight of stairs, before banging on a locked door, entering a flat, and – once I was inside – triple locking behind him. I was standing just behind him, looking around the room and was by now feeling a little vulnerable. He sat at a small table.
He had calmed down somewhat, and then pulled out his revolver. “Lucky for you I am an off duty cop. A few seconds later and I would have shot you in the face. End of.”
“You were in a township. You never get out of your car. Never!”
His mother made me a cup of tea, and he then gave me directions back to the highway for Pretoria. I arrived at my rehearsal in a rather shaky state, but learned a valuable lesson about personal security in South Africa. [I was possibly in Verwoerdburg]
One of my more exciting university duties was to adjudicate at the Roodeport Eisteddfodd. It was a few days of the most eclectic and diverse range of talents and skills. Like South Africa’s got Talent, but 25 years too early. I will never forget the performers and some of the international artistes I sat and adjudicated with.
At the time I was there in South Africa Nelson Mandela was also voted into Presidency. I stood in line with hundreds of people, wending our way in queues and streets, all with the common purpose of trying to restore an overdue justice to the country.
When he had been installed, the University honoured him with a special graduation ceremony, held in a massive marquee on campus. Being a pianist by trade, there was no real scope for my participation, but I enveigeled myself into being allowed to play timpani for some of the pieces. I wasn’t very good, but I managed to keep in time, even if a proper drum roll (required) was really beyond me. I gave it my best. As Mandela later crossed campus with 2 aides (body guards) I managed to zip out my hand held camera, and get an up-close shot of him. Like from 2 feet away. But as with all non digital medium, I would take some while now to find it.
One of the more hilarious memories I have stems from the fact one of my twins has recently taken up horse-riding. I watched her trotting round the paddock with her friend and it reminded me of an outing I had with the viola player. She was the daughter of the lady I roomed with after living in Sandton.
She was not only a talented viola player (who also played in the Mandela orchestra) but a near Olympian horse-woman who aspired to ride with the Lipizzaners [specialist riding school]. No hobbyist was this lady.
She asked me one day at the end of her piano lesson, if I’d like to go riding one weekend. I said I’d love to, but had only had 2 riding lessons. (I wasn’t joking). So some weeks later she drove me to the stables where she kept the thoroughbred stallions she regularly rode. I can say unequivocally that these beasts, beautiful and magnificent, were to me scary, and mounting my allocated horse felt like I was ascending the north face of the Eiger.
We set off at a modest pace, out in a completely raw and open area of wilderness. No stable, no boundaries, nothing to hinder a happy horse from absolute freedom.
My horse could tell I had not a clue as to horsemanship. He took off at a game pace, following my friend who was riding expertly. My four legged friend decided to up the ante at one stage and overtake, especially as it’s rider was clueless and had zero control. We sped towards a heavy tree area, and I could see low branches – heavy thick branches like rods of steel. These were approaching at a break neck speed and I had only one chance to escape a certain and dramatic fall when it hit, as it would catapult me backwards in one swoop. That would end badly!
I hung on to the reins and ducked forwards for my life. By this point my student friend had caught up with me and was horrified at my evident novice inability. So was I.
Suffice to say that was the end of my horse-riding. But I wish my daughter more success in her lessons. She -at least – is getting the instruction on rein control, and how to use her feet. And of course she is on a small pony, not a horse of 17 hands tall.
Many more stories I could regale you with, Another blog, maybe.
Uh oh ! It was obviously going too well. And then my train pulled into the sidings. Oncologist has decided I need to have a CT scan to ‘check if the chemo is working’. Ahem. That is a concept I don’t want to process.
How can a person endure this amount of chemo-toxicity I’ve had and still potentially have a monster growing, unless one would suppose it relishes the diet of nasty chemical delights. Unlike me who approaches chemo-day with the feined enthusiasm of a practiced march to the scaffold, many people attending will be quiet, reserved and possibly slightly in denial. One new customer started to feel very anxious watching me deal with awful pain and visible side effects.
I pointed out his chemo was different, but he fought back saying, is also chemo. (ie that all chemo is the same). I explained that his chemotherapy (dexomethasone and prednisilone) was totally different from the beast that is folfirinox. Less – if any – side effects.. Lucky chap.
I think back to the first pointer at trouble on my ominous CT where they picked out firstly a bile duct stricture, which is often associated with ‘distressing symptoms and excessive morbidity.’
My own research at the time showed malignant causes of such bile duct strictures included the following: Pancreatic cancer (adenocarcinoma of the pancreas being the most common); Gallbladder carcinoma; Cholangiocarcinoma; hepatocellular carcinoma (liver cancer), It is also known that patients with malignant biliary obstruction frequent present at a late stage and have a dismal prognosis. So here we are.
Now if only there were proper screening measures in place, the 95% of people (who will die) may not be affected by these cancers. But enough of my mental wanderings.
I end up leaving the chemo-unit again in a shaky state with visible tremors worthy of Parkinsons.
This week I had a disconcerting foray into chemo-amnesia, which has been labelled by some humorists as Craft Syndrome. [Thank you Karen!]
Won’t elaborate here, but definitely sums up the mental torment which leaves your brain by the roadside whilst your body drives off. (Maybe HRH Prince Philip suffers from this affliction too).
So I have just had a crack of dawn triple CT, to ascertain if chemo is firing on all cylinders. Takes 10 minutes to run the contrast procedure, but you have to fall out of bed at an unearthly hour to make the 30 minute car ride in. (Thanks again to Mr McHaggis aka personal uber).
Now only a week to be given the results, which were uploaded instantly to the hospital server.
I recall a volunteer placement i undertook whilst at the Academy in one of the most deprived parts of the city. I still remember driving over there and passing the rows of shops, all with their shutters down; decorated with varying degrees of graffiti artistry. I was more shocked to realise that all the shops were in fact open. The owners just refused to raise the shutters – in anticipation of a sudden break in, without any notice, or otherwise because the glass hadn’t been replaced …. yet…. or ever.
The children in the primary school were very cute, many with special needs but all eager to learn and sing with gusto. Aside from being somewhat apprehensive about my personal safety, it was a positive learning experience. For all of us.
I was lucky enough to be appointed a governess a few years later to a wealthy north American family. The grandfather was John Smith,* the father was John Smith jr and the child was John Smith, the 3rd.
John had 2 brothers and there was a whole army of attendants who accompanied them on their travels. True to the millionaire lifestyle, the boys mother took with her on her travels, walk-in wardrobes and walk in shoe carousel. Wow – shoes and clothes in every colour of the rainbow. I had never seen anything quite like it. Me – with my 2 pairs of good shoes (Bally flats I recall) and flexible wardrobe, all contained in one case. I had a room down in the basement with a view of the perimeter wall, but I tried to make the room more homely with cut flowers and a few personal trinkets.
We had formal lessons in the villa and play-times in the parks and by the lakes. It was a lovely chapter and once again there was the imbalance in social etiquette where many seemed to struggle.
The chef and housekeeper were married. Maxim had a very Gallic sense of humour but was a genius in the kitchen. His wife Celeste was patience personified. Unfortunately, they both felt distinctly patronised by the Madame, who plainly didn’t understand the middle and lower classes. The husband John Smith jr, had gone away on business and was not able to keep his spend-aholic wife in check. On one fateful day Maxim made a beautiful picnic for Madame and the boys, and when they returned from a hazy hot day by the lake, Celeste asked what her husband should prepare for supper. There had been no money left out for shopping, so the cupboard was bare. Madame was going out for dinner but replied… “There are sandwiches left over – you can all have them”. That was the final straw. The chef said, “we are adults, not little children. We refuse,”
Celeste ran upstairs to show me some thin poor quality t-shirts which had been purchased at an exclusive boutique the day before. “Madame paid nearly £100 for the two of these,” she railed.
The following day I overheard a snippet of heated conversation between the chef and his employer. The phrase ‘she is crazy‘ was spoken very loudly. When he came off the phone, he told me Celeste was packing. “We’ve resigned,” he said. “We leave this evening”.
They were a big loss to the family and the children who adored them also.
* not their real name as they are internationally recognised.
In the late 80s I completed my teacher training at Aberdeen and enjoyed my final stint as a postgrad student. I would cycle to college every day and marvel at the hills and valleys of the Grampian terrain (okay, hills and valleys is a tad Welsh but who’s invigilating). There was a massive down and up hill minutes away from college and the trick was to belt down the hill at a cracking speed, planning to catch the green lights at the bottom and pick up tempo on the opposite incline. (I think it was Westburn Drive)
I do recall one fabulous winter when everything was under several feet of snow, doing this trick and only processing some parked cars covered in snow at the last second, and I looked up with a nanosecond to spare before connecting bonnet first with a car posing as a blanket. Was a memorable impact and after a few minutes of eye watering pain I pulled the bike into shape and limped the remaining distance to the college.
College was entertaining, partly because one of my Academy friends was also doing the course. Tracey was a talented clarinettist from Barnsley, with a raucous sense of humour and extrovert personality. We also had a flautist called Audrey and so we would play chamber music for fun. Music of such a standard was quite a rarity in a teacher training college. We also gave professional recitals both in the college and the city and I recall adding Bach-Busoni Chaconne in D minor (virtuoso solo piano work) to the programme. This little chestnut added several hours of practise to my daily routine as pianists don’t normally cram in a day of teaching on the side.
My first teaching placement there was at a country school about 20 miles out of the city. I would periodically cycle there which made a very brisk start to the day. (Just under a 2 hour cycle, each way)
The department was – as is often the case – run by a single member of staff, and with very limited resources. It was a stark introduction to secondary teaching – with a narrow musical vision and not much scope for development.
My second placement was a bit of a shock – a town school in the affluent suburbs. Here there was a distinct change in attitude, from the pupils. I remember one pupil saying, …and what exactly are your qualifications? My father will want to know who is teaching me. I was horrified. Arrogance exuded from every pore of their adolescent being.
Although it was a busy school with lots going on, and I heavily invested my time with them, I did leave feeling quite undervalued and wondered periodically why I had thought teaching would be my thing.
My last placement was in a bustling city school called Oldmachar Academy. This was to be the pivotal moment for me. Nice kids, competent and talented staff, and respect was part of their culture. As a complete coincidence the Head of Music and I shared the same birthday which forged a bond which held for many years. I loved working there, helping coach kids for exams, rehearsing for the end of year show, teaching interested children about many aspects of music composition, history and performance.
After this sojourn into secondary teaching training I qualified with my PGCE (merit in teaching) and then applied for a lecturing post overseas.
More on that and my years in South Africa in another blog. 🇿🇦
Turning up for my bloods 3 days prior to intended chemo day, I am hopeful that my neutrophils are in the go-ahead category. I assume if any problem they will call me and recuse me from Monday’s planned chemo session.
I turn up at 8.30 with my favourite Uber driver (Mr Ewen McHaggis) his preferred pseudonym. Off into the Unit and am told within 20 minutes – “neutrophils way too low. Chemo cancelled. Come back in a week”. Aarggh
Sometimes they can give an injection of G-CSF (granulocyte colony stimulating factor) to boost your bone marrow, but they prefer in my case a wait-and-see approach.
This gives me a window of opportunity to visit family up north, some of whom are very sick and also to share my awful news in person with those able to process it. So now that I’m debarred from flying (thanks to the pulmonary embolism) I have to take the train. I take little Juliette for company and book a chic studio apartment which suits us to a T.
Principally this ‘breaking news’ is to my sister and her family, who are fairly devastated to hear it.
I am told about a family friend of theirs who was swept away 5 months after a late stage diagnosis. Unable to qualify for chemo, there was little the doctors could do.
Heavens, I’m already into month 3 and I can say unequivocally I’M NOT GOING NOWHERE. (double negative intended)
Not yet, I have so much to live for, and so much to do.
So my mini holiday rides past, and I return to full on home chaos.
Making the revised chemo session a week later I am told bloods now all good, however I point out (not for the first time) there is still an issue with the picc line.
After several x-rays and a consult with the vascular team, they agree there is a large kink in the line at the point of deep venous access (SVC), and so it needs to come out and a new one inserted. This is done by well qualified staff in a treatment room, sterile conditions and a couple of unhappy injections to make the procedure more tolerable. So job done and new picc line now installed in my writing arm.
By now its far too late to run the drugs as we need around 5+ hours to complete infusions 1 and 2. So I am rescheduled for 2 days later.
Your life under chemo regime is not your own – you have to be flexible to drop everything and attend at times not always convenient. However we know chemo is the main combatant which will keep you from boarding the train of no return.
I have had various offers of help, suggestions of alternative diets, strategies and self help programmes. I am going to do my best with all of them. What’s to lose!?
To be honest if you get a terminal diagnosis, probably the only thing in your mind, burning like the quintessential yahrzeit licht (which you know could well be burning for you shortly) is the sole objective of prolonging your life. So you have to ride the lows and hope for the highs.
No trip to Liberty, Prada or Harrods could entice you off that mindset. What is money if you have no health to dress it in!?
I watched the shoppers at the Airport duty free on one of my last trips, buzzing in and out of boutiques with their natty designer carrier bags. I wondered what they would be shopping for if they were me. Candy/ chocolate ? Perfume? Clothes? Jewellery?
I just want to go into the Good for You store and ask for my life back
I’d even take a discount on any years I have left. Give me Five years (would be terrific). Give me Two years (might even settle for that). But give me something to hold on to!
Money – when offered by magnanimous individuals – is to go primarily to a cure, to surgery, to prolonging life. Not anymore to play ‘dressing up”.
Another sobering component of this phase is to memory-build with your family, in my case seven children aged between 4 and 21. A much awaited evening to Mamma Mia is presently on the cards. Yippee!
This remains hard to plan in between doctor, GP, chemo appointments, blood tests, never mind the downturns you experience with horrible side effects. But try you must, for otherwise they will have an abiding recall of ‘mummy was always sick or always in hospital’.
Whilst the older ones are working and independent, the younger ones – unable to process illness or even to be told – need quality time with you as a parent, to do fun stuff.
So you move on, with more positivity than you often feel.
We are also doing a book from the recent amazing concert. If you haven’t yet added your message please do send as soon as possible to bookforjacqueline@gmail.com
Combined with the pictures, and the soon-to-be turned around audio recording, it will be a heart-warming keepsake. If you missed the evening but still would like to pen a few words, go for it.
The aim is to give an overview for my children of their mum whose mission in life has always been to spread music, light and laughter- irrespective of time, people or place. Antics and anecdotes welcome.
So how did we do on chemo 3? 💉
Speech issues – tick
Nausea – tick
Neuropathy (hands and feet) – tick
Ulcerations on head – hurts like blazes. (new)
Hair falling out (new)
Chest pain (lungs….?) tick
I’m fairly confident that I will survive the last week with no further inconveniences and so will now stop this current blog and fall back to something more colourful to share with you.
Racking my brain I recall some fascinating stories around the time when Nelson Mandela was installed as President of South Africa and there are plenty of hair-raising stories from my years there to regale you with.
‘Hair-raising’ – ha! that will be ironic for someone whose hair is presently shedding like a molting labrador.
When I was at university doing my Masters degree I decided to join the OTC (Officer Training Corps) with a view to getting fitter and learning new skills. Its aim is to train the future generation of Officers for both the Regulars and Reserves. As an organisation it is internationally recognised for providing leadership training.
I was a few years older than most of the recruits as they were mainly undergrads, but we shared lots of team-building skills and age made little difference.
The entry qualification included a mile run and an assault course, the highlight of which (for the officers at least) was to watch us crawl under a massive horizontal scramble net, the underside of which was completely under water. I remember being shocked at this because I had to cover the distance with my eyes totally closed. The alternative was to keep my eyes open….. and lose my contact lenses. It was a real test of stamina.
We were then issued with fatigues, army boots, dress uniform and brogue dress shoes. I think I have a photo buried somewhere of me in the dress uniform which I will include if I can find it.
Training follows a syllabus as laid out by the Royal Military Academy Sandhurst. Weekly training nights are used to build up theory and basic practical lessons. Training and exercises, usually at weekends, were structured around the academic calendar. Most activities took place during the winter and spring terms. Having successfully completed basic training, the amount of time cadets commit to activities depends on the amount of time they can spare.
Our basic training included content relevant to the Military Training Qualification tests (both written and practical tests).
Year one syllabus:
Basic training (MOD Alpha)
This year involves instruction in all basic military techniques, including drill, map reading, camouflage, first aid, weapons training, small unit tactics, radio procedure, and fieldcraft.
When we had done our basic first months training we went on overnight exercises – quite an experience leaping out of an army truck in the pitch dark with a massive backpack and rifle in your hands.
One of the favoured locations was a training ground called Black Dog. I remember one such trip where were installed in barracks late at night and then intentionally woken at 4am to go out on a run. 3 mins to dress, grab your boots and make it to the door. Awake ! and ready to roll.
(My teenagers would fail such a challenge, but I can still do a 5 minute turnaround)
Team A had a lieutenant in charge who made sure his platoon had the correct issue boots. Team B (ours) was more slap-dash and less interested in our podiatry wellbeing. Consequently we were running in the wrong boots, ill fitting and it slowed us as a whole team down.
One of the areas I enjoyed and excelled in was in stripping down a rifle and reassembling it blindfolded. Dexterity was on my side. I also greatly enjoyed the rifle range. Physical stamina was not my forte however, and I do remember occasionally struggling to keep up with the runs.
Not to be put off I enjoyed it so much I put myself forward for pre-RCB training which could see me take a place for Officer Training at Royal Military Academy, Sandhurst. My preferred division was the Education Corps, seemingly sensible for someone with my additional teaching qualifications.
I attended Beaconsfield for my pre-RCB and we were required to complete many tasks (all marked). The physical tests included:
Beep Test
Sit-ups
Press-ups
Obstacle Course
2.4km timed run
Personally, I hadn’t a chance in a hot oven of doing press ups... neither did many of the female recruits.
21 proper press ups for ladies in 2 minutes.
Unless of course you were a fitness supremo and were very tomboyish.
The timed run (ladies) was to complete 1.5 miles in 13 minutes.
With practise I could do it in 11 minutes 30 which almost qualified for the male time of 10 minutes 30.
Presentation (to officers & other cadets)
Field craft analysis
General knowledge paper, including aspects of military structure
1.5 Mile run
Outdoor Assault course
Indoor Gymnasium course
Interview
It was a very professional introduction to military life and i greatly enjoyed it. On the outdoor course each potential cadet had one part of the course to be in charge of. My task was to get my team and a large oil drum over a 12 foot high wall. Sound easy? Yes? The obvious solution was to stand on the drum and hoist the team over….. Wrong!
No one was allowed to stand on the drum. So I end up last man on the top of the wall. I’m holding on, facing the wall. The supervising officer starts his countdown. 10, 9, 8…..
I call out “How do I get off this ** wall?”
He calls out, “just let go!”
So I do exactly that. And crash down on my legs inches from the wall face. On straight legs – because I’m too close with no space to bend my legs.
The impact is excruciating and I am in shock. Nobody said ” kick back away from the wall and land on bent knees. Or spin round and jump away from the wall”
Oddly no Army personnel ask if I need to see a medic, although they saw the degree of impact.
I limp to the Presentation in absolute agony and sit through the presentations of others. By the time I have to stand up and give mine, my knees have given up the ghost and I’m standing at an obvious angle. Every movement causes me agony so I’m not really concentrating and I’m sure my words are slightly incoherent and barely making sense.
We have some social time in the Officer’s Mess, which is quite fun but of course I’m in pain so quite keen to retire for the evening.
Tomorrow is the 1.5 mile run and the interview. Woopee! Not so sure about running in this condition…
We sleep in a dorm and when the alarm goes off in the morning I am unable to stand on my own. I see my legs are now at about a 90 degree to normal.
I am excused by the officers and immediately despatched to the hospital at High Wykham by car. They are concerned I may have badly damaged both legs. Possible double patellar fractures.
For my part I’m just peeved as I have generally done quite well. However you can’t progress to RCB itself if you don’t complete all the sections of the pre-RCB.
I come back – eventually – on crutches. So I’m not doing the run but still having the interview.
I’m told I’ve done very well across the tasks – minus the press-ups and my complete inability to climb the mandatory rope in the gymnasium fitness tests. Upper body strength doesn’t quite tie with playing Prokofiev. Sadly !
So I am congratulated on being excellent officer material, but don’t make the RCB (requisite) for Sandhurst.
Drat – after all the training I’ve done. Going out in rain and in the dark, running several times a day.
Instead I fly off the following day -from pre-RCB – on a planned excursion to Switzerland. To stay with friends.
On a walking holiday…. in the Alps.
On crutches.
All I get to climb is a few flights of stairs, and that with great difficulty.
I remember saying over the years…. how hard can it be? (Whatever it was…)
Irrespective of the situation I’ve always risen to the challenge. However in the case of Curzon v Chemo, I feel I am up against a practised opponent. After round 1 I thought I was just unlucky with side effects. Walking into the Day Unit I hoped the last cycles symptoms were just an abberation. Surely I’m not in the ‘lightening strikes twice’ category.
Opting out of the hair-saving freezer treatment, I hope things will be improved.
My recent white cell depletion, which necessitated an in-patient stay has picked up sufficiently for me to face my chemo dragon.
Infusion 1 gets underway, number 2 joins the party and hey-presto, I find my speech sliding off the table, followed by several other nasties (rather not divulge in this forum). But boy, its another cause for alarm. I’m suddenly jumping up in pain with extreme muscle cramps. Wonderful! Every time I come here I add to the list of unexpected adverse effects.
I look up the statistical info on the frequency of the side effects which I have had.
1 in 10 COMMON
Neutrapoenia (blood disorders)
Delayed diarrhoea (this is very nasty….)
1 in 100 UNCOMMON
breathing difficulties
Abdominal pain
1 in 1000 RARE
Muscular contraction/ cramps
Paresthesia, Vomiting
1-10,000 EXTREMELY RARE
Transient speech difficulties
I can add a couple of new ones not previously listed!!
This time I have extended side effects which drag on to the beginning of my next cycle.
However I have a charity concert which has been scheduled for a few weeks.
By the night before my concert I have a horrific throat and unspeakable mouth ulcers. The prospect of singing for a couple of hours fills me with dread. I realise though if we wait until the Sunday morning we could be stuck at A&E all day, and run into timing issues. We opt to go in Saturday evening. I am given IV antibiotics and other meds, and finally leave hospital at 4am.
No pressure. I manage with my 4 hours sleep and get up to get prepped for the event. Hair, make-up, dress. And a double check that I have all the words for the various songs I’m going to sing.
The evening was a spectacular success with a capacity audience and delights galore to tempt the pallettes and feast the eyes.
From an organisational perspective it was a major success and everyone had a superb evening. With full audience participation and guest artistes (Debbie Diamond and Miriam Kramer on violins) it brought a new level of professional mastery to an appreciative audience. This included parents from my children’s school, ladies from the wider community, Headteachers old and new, former work colleagues and friends both distant and near.
Below are some pictures from the evening.
We raise a substantial amount for various cancer charities which is heart-warming especially as I also have family affected by cancer, not just myself.
So I have a bit of a rest, completely a course of heavy duty antibiotics and additional meds.
It’s actually supposed to be straightforward. Nu? Nothing in this journey has been straightforward!
So I present myself at the Day unit for duty, – yes’sir – and we go through height? (I’m sure I’m shrinking) ; weight? (skip this one) and standard obs.
My potion has already been crafted by the alchemist in the pharmacy the previous week so it’s there waiting for me – ready to roll.
The main chemo infusions are hidden under a brown paper bag like something dodgy found in an illicit drug dealers shop. Secretive, and smacking of something distinctly unpleasant. As interesting as it sounds here, and with the appearance of a dark and murky liquid, it is apparently a cover just to keep the drug out of direct light in case the potency of the killer chemo is affected. And its actually a pristine, clear infusion- so we check the picc line* is running clear. Tick.
[* the Peripherally Inserted Central Catheter is sited under x-ray guidance in a vein running from your arm into your chest: it stays for the duration of your chemotherapy; or until you discontinue, OR DIE]
My chemo is in 3 parts. Infusion 1 begins. This is the gold standard for PC. A noxious solution you wouldn’t wish on your worst enemy. It runs, and nothing untoward happens. Oh! Goody!
Now because I am fairly attached to my hair, and loathe to part with it by the handful, I opt for the space-tech cold cap treatment. Now this is a no Joker piece of kit. Imagine, if you will, a formed gel pack shaped to your head. On top is a crown, shaped like a cycle helmet in a pretty shade of luminous red. Voila! ice hat, bicycle helmet, now plug yourself into a freezer.
Yup. Now you understand why they have a sign at the door of the chemo unit stating…
……. No photography please.
Who wants to be pictured dressed like a real-time female version of Ali Baba (minus the 40 thieves)?
Now the ice treatment has to run for the last half hour of drug 1 (hilariously this is known as the warm-up). Then it stays on for the duration of the second infusion, Then add another hour for the cool-down. It’s the ‘freezer’ having a work-out, not you the struggling cancer patient. Ahem.
Now this is where it de-rails. Midway in the cooler-bag head wrapping procedure something goes wrong. I start to lose my speech, and the personnel are concerned I could have had a mini-stroke. It is so bizarre that I record a message to my support group, just so I can replay and analyse the damage later.
Infusion stops, head is uncovered, and we call in the doctors. After a bit of respite and a tad of luxury warming up (thanks to dear friend Shani for the beautiful blanket) we proceed with the remainder of infusion 2.
You didn’t really think I was going to share an image of the cold cap which was so hilarious, did you?!
However, you see I’m smiling, even tho’ I’d been turned down to quick-freeze settings, and sound like I’d had too many whiskeys.
But let’s push on. So we finally re-start and we get to the end of the infusion 2. Quite some delay ensues before the doctors are happy I’m “good-to-go” (home) and they load me up with the next brew (infusion 3). A portable bag with a third drug dispensing a slow infusion over 46 hours.
You return a few days later to have the unit disconnected and carry on with your precarious travails over the next 10 days.
Now you’d think not much could go wrong after all this, wouldn’t you. Aha! Onwards.
Going home with your paperwork (of course you’ve not read it until now. You’re focussing on being active, trying to be normal and simply staying alive [cue: video of Vinny Jones doing CPR to the Bee Gees Staying Alive]
However now you’ve read it you know you could develop infections, neutrapenia and sepsis. The former is a white cell depletion caused by the chemo. The latter is where the former creates an environment for an infection to establish itself – quietly and without you knowing – and then starts wiping you out. Both can cause you serious harm, and sepsis can also be fatal.
Oh yes. More cracking news.
Not that it’s going to happen to me. Is it……?
I have to travel to visit sick relatives during my off-chemo week; probably not the sanest of manoeuvres but I can’t wait until my hair (might) falls out. So I go, but have to pretend I’m well.
Would hardly be de rigeur to say. “hi, how are you all? By the way I’ve got cancer”…. whilst they’re sipping their tea.
So I start my week with a mild sore throat [duty Lemsip & paracetamol]. Next is a mouth ulcer [duty Corsodyl]; Next is a bit of a headache and a constriction in my breathing. [duty Doctor] not good at all……
By my last few days away, I decide to call my unit and explain I’m a bit out of sorts. The nurse says she’s a bit concerned. Maybe you should present at A&E?
Hmm. Last thing I need is to be admitted to hospital 100s of miles from my children.
So I struggle on for the last few days. By my final day away I’m feeling quite worried, especially as I can’t take a full breath. Whilst I’m talking to my chemo nurse she hears me struggling and recommends I go straight to A&E with the caveat… this is not sounding good.
Suffice to say after an excruciating day, where minutes drag out like hours, I make it to the airport and stand in an interminable queue, seriously wondering if I will:
a) make the 90 mins until boarding
b) make it as far as take off
c) make the first 50% of the journey, because after that the pilot wouldn’t be able to turn back.
I make it back to London, with 2 lovely young ladies on the flight who chuckle with laughter when they read my Cinderella page.
On arrival at Heathrow I ask hubby to drive straight to hospital – no point in taking chances. Unfortunately when I get to hospital my white cells have crashed, I seem to have an infection, my ECG isn’t great and they think a lung CT is necessary too.
Fast forward- I haven’t been home yet and spend 2 further days unplanned in oncology ward.
The CT comes back showing a PE (embolism) which I definitely wasn’t expecting. Now I am on heparin for life (or what’s left of it). I feel – once again – I’ve rolled a seven on the dice.
Lordy me, the adventures I have. Just as well I survived the flight.
But my charity concert is fast approaching and this is one date I can’t miss!!! See you on the 16th.
Ok. so I have graduated to the chemo unit, where we go to be fed poisons weighty and mighty in their efforts to usurp the enemy cells attacking us – the innocent host.
Truly a sobering experience sitting chatting quietly to people of all ages and backgrounds, all agreeing what we need universally is …. “just a miracle”.
One young lady of 37 with 2 very young children sits watching movies on her i-pad whilst her infusions run. She is not predicted to make a year. Truly horrible.
Another lady’s story resonates with me as her diagnosis is similar to mine, with an equally dismal expected outcome.
Ok. but firstly let’s skip back to see where this all began.
I am sure I had a couple of severe pancreatitis attacks over the past few years – isolated events which eventually resolved and therefore went unreported, as is the usual predicament of the multi-tasking and perennially busy mother.
The latest attack was during a year 6 presentation at my kids school in July 18. My experience was noticed by several people in the hall and I was unable to speak through exquisite pain. As usual, I went home and got on with things. This is just the way it went, not an attempt at martyrdom.
During this past summer I was under a massive level of stress, but then I also started to have regular stomach pain, just under the rib margins. This pain was significant later, as it apparently related to the liver and pancreas.
Following a random GP appointment in the middle of September for one of my twins, I got my liver bloods checked, and was then sent in for an ultrasound, where the female sonographer was decidedly non-chatty. Other than her comment that my gallbladder was enlarged, and she couldn’t see the pancreas clearly, she had not much to say. But my bloods were waiting to reveal something sinister.
What most people are unaware of is that inflammatory damage in this way can change the molecular make up so that malignant cells grow from the damaged area. This is what I believe has happened in my case and unfortunately there are zero symptoms until another organ is affected and measurable pain starts to manifest.
I had my liver bloods run – these came back very raised. They actually term them deranged. This was followed by a GGT blood which came back 50 times higher than normal. Goodness knows how they term these ones (hysterical?) and this resulted in an immediate invitation to see a surgical team in hospital. Typically this presented on a Friday afternoon. yup – everyone is still busy.
By the time I made it to Barnet Hospital the day staff had left and the on-call special reg was in place. Nice chap, very laid back,
“You look clinically well,” he says to me.
“Yes?” I say, “but my bloods don’t say that.”
After a quick exam he concedes, almost reluctantly, that we can do the CT. When I get back from the CT suite his demeanour has changed perceptibly and he is struggling to keep his eyes inside their orbits. Lots of dialogue but the jist is a stricture which doesn’t belong in the hepato-biliary-tract. Ruling out other possible benign pathologies it looks like its something serious. He mentions – en passe – cancer.
Ok, he assures me, I will be on next weeks agenda (known as a MDT) after which point I will be invited to discuss next steps. That sounded splendid, if somewhat urgent.
Now the ball slips. No phone call, no feedback, I don’t hear anything and neither does my GP who sent me up so urgently 10 days earlier.
Almost 2 weeks following this CT, ping-ponging my way to my surgery to ask for the tenth time if they have any news, and the GP shakes his head in disbelief. He phones Barnet whilst I am sitting with him. Eventually the consultant (superior of the on-call sp-r) admits nothing has happened. I’ve missed 2 meetings and will be on the next one. Ha !
Golly and here was me thinking this was urgent. Just as well it’s not, eh !
In the intervening 2 weeks I’ve dug deep and through complicated surgical literature, and after excluding myself from pancreatic cancer (after all it can’t be that urgent if I’m still waiting), I speculate that it’s a liver issue, after all it was my liver bloods which were wonky. Nothing a transplant team can’t help me with.
Now I get further invites for subsequent CT scans, thorax and then pancreas protocol, and now I’m starting to get scared. PP is to investigate further the size and spread of a tumour. Hey ho, no-one has even mentioned the Big C, other than superficially at my recent excursion to Barnet.
Now I am summoned for a PET scan – to see if I presumably light up like a proverbial xmas tree. This was a very horrible experience because still no-one has even mentioned the word CANCER. But it’s there, a tangible whole body scanner, looking for rogue invaders.
Next phone call is an invitation to see – not a consultant or a surgeon – but the Oncologist. So we roll up there, knowing the distressful diagnosis, before the official announcement.
So the bad news for all of us in this elite club is the mention of metastases, succinctly meaning spreading and setting up new power blocks of destruction. Usually it makes it to liver, peritoneum, stomach, brain. Mine seem to have turned left at the junction and headed for the lungs. Lovely. Now these metastases present a significant and further hurdle.
If they are proliferate it’s very very bad news.
If the metastases are localised it’s more likely surgery might be on the cards.
If they are distal, its additionally a poor prognosis as doctors will argue its working around you, constantly spreading it’s evil cells.
Let’s see what the literature says about Pancreatic Cancer (PC):
It remains a complex malignancy with the worst prognosis, lack of early diagnostic symptoms and resistance to conventional chemo- and radiotherapies.
Nearly 9,500 people each year are diagnosed with pancreatic cancer in the UK.
Adenocarcinoma is a highly lethal condition with no early signs such as occult bleeding to allow a screening programne to exist, and no diagnostic blood test. It’s remote inaccessible location makes it unavailable for clinical examination. According to the ACS, the AmericanCancerSociety, more than 45,000 Americans will be diagnosed withpancreaticcancerthis year and more than 38,000 will die.
Suspicious signs and history should include note of:
persistent niggling upper abdominal discomfort; weight loss; increasing back pain.
History should include any family history of pc; heavy exposure to cigarette smoking; previous malignancy such as stomach, colon, uterine cancer and chronic pancreatitis.
Diagnosis is mainly by CT, and the pancreas protocol to determine resectability (operable or not). The median survival rate forstage 4 (inoperable) pancreatic canceris between two and four months.
If you are a truly lucky bunny and can qualify for surgery, they will remove the spleen, gallbladder and some of your pancreas, stomach, duodenum. Basically its a very dramatic slim-down measure, in the hope the nasty little invaders get stopped in their tracks.
Cheering stuff. Especially when you’ve waited this long to get on the starting blocks.
So we moved onwards to investigation which the oncologist confirms will be an ERPC: An unpleasant procedure to take a biopsy of the tumour to establish whether neuro endocrine tumour [NET] or less happily an adenocarcinoma. I will also require a stent to manage the strictures.
Knowing it is poorly tolerated by patients I ask (politely) if I can get a general anaesthetic for this. I’m told it will add another 3 weeks of waiting. This is completely unacceptable, so I agree to let them push on with ‘good sedation’. That transpires to be a joke too.
Despite my entreaties to every professional en route to this procedure and assurances of happy sedation, it was a disaster. I’ll spare all the awful details but suffice to say I woke up multiple times and croaked through oesophegal occupied territory my imminent need for rescuing. Well done! dear NHS, who aren’t imbuing me with confidence.
And now we finally reach chemo week. – week 9 since my original CT. Not quite like Blackpool (if you follow Strictly), but a milestone, nonetheless, for you think now they are taking it all seriously. Oh, and it turned out to be adenocarcinoma. Well, I’ve not been lucky thus far, so didn’t come as a total surprise!
Round 1 – infusion of various cocktails. Mine was planned as a straight malt, followed by a tonic rinse; a blend to follow, and lastly a take-away infusion – one for the road. Unfortunately I developed a severe and unexpected reaction to the initial malt, and very nearly missed the take-away.
Fortunately circumstances resolved sufficiently during the penalties and I was allowed home with the 3rd infusion in place. Heck – this journey of mine doesn’t half bring on the surprises.
I am concluding the first week of 6 fortnightly sessions, each with similar concoctions and potential side effects. Sepsis as a result of falling white cells is my next would-be assailant – they give you a big warning on this, saying it could be fatal.
Good grief! If it’s not the cancer which is killing you surely and slowly, it could be the chemo.
...When all is said and done 
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