It has been an overwhelming past few weeks since I last posted here. The trauma of failed surgery and the spectre of returning to chemo has been omnipresent in my thoughts. This, plus residual pain from the abscess which accompanied my impressive stapled wound, have kept me busy with calls to pain teams, clinical nurses, and of course the mandatory hospital sojourn. Before starting on chemo again I have to have the picc line re-inserted, a repeat CT scan to see if my baseline is still stable, repeat bloods and then go back to the chemo suite. I didn’t think I would be ever going back, so it is a very sad chapter for me.

Now I have to step up my game, and research clinical trials, consider second opinions from specialists, read more on nanoknife and also look into some alternative medicine options. For sure the NHS won’t push for alternatives and extras: they stick to what they know best. However, you have to please forgive me if you see me looking a bit down or tears falling on my face, as indeed my young daughter noticed a few days ago, only for her to then to realise… something is still making mummy sad….

This week saw the passing of Doris Day, aged 97, an icon of Hollywood, megastar and singer. Despite being four times unhappily married, Doris created a robust, cheerful and wholesome characterisation to her many stage and screen roles. Most famously she appeared in Calamity Jane, but by 1955 she had taken part in 17 films (15 of which were musicals), and her closest box office rival was Betty Grable. After many years of floundering between poor scripts and unhappy screen offers, she retired from Hollywood and devoted her energies to animal charities, investing $22 million into these projects. Many of her co-stars [Bob Hope, Jack Lemmon, Rock Hudson, James Stewart] gave her the highest accolades as a performer. Doris Day was in fact a stage name which she disliked. She was born Doris Kapellhoff, the daughter of German immigrants. She preferred however to be called Eunice or Suzy.

Neus Catala, a Spanish woman who has just died aged 103 has also caught my attention in the Telegraph obits. From a peasant background she rebelled at age 21 against the drudgery of working the fields to become a nurse in Barcelona, just as the Spanish civil war broke out (1936). She then found herself in charge of 182 residents in a children’s home, evacuating them over the Pyrenees and into France. When the Germans occupied Vichy France in 1942 she joined the French resistance, smuggling arms, assisting activists, making arduous journeys by bike or bus. By this point she was married, but following a betrayal in 1943 the couple were arrested by German troops as they were preparing to leave their flat. Although initially held in Limoges they were then sent at the beginning of 1945 to different concentration camps, Neus to the infamous Ravensbrook, and Albert to Mittelbau-Dora. She said she survived the horrors of the camp because of her moral strength, but especially because of the solidarity amongst her companions. After the war she returned to France, re-married and had two children. She returned to Spain only after Franco’s death in 1975, and looked for the testimonies of other Spanish women who had suffered at the hands of the Germans, which she published and for which she was awarded many accolades, including the Cross of St George. She was the last known survivor of Ravensbrook.

So what’s to learn from this magnificent individual? Having lost everything, she persevered. Her challenging background and acquired (of necessity) skills were probably part of the reason she had the stamina and will to survive. But the camaderie and support of the women around her would have been critical to her mental health. Notwithstanding that we are living in an entirely different era, war is far removed from our thoughts, and routine and mundane events occupy our lives, I feel overwhelmed by the real support I have had myself. There is a veritable army of incredible meal providers – and to you I thank you most sincerely. Although I am a very reluctant eater, (having no appetite and very little sense of taste) you have provided the family with varied and interesting menus. From my own perspective my hospital stay was made bearable by the varied and interesting visitors who came. Some of these people were known to me, some came in groups like the eponymous buses, some were total strangers (brought to me by their solidarity on the tehillim groups), some were absolute angels who came every day, including walking in on Shabbat and Yomtov. Many brought gifts, magazines and books, foods and treats to perk me up, but what they all provided was real companionship, without which you would go bonkers! [big thanks to each and every one of you]

Allison Pearson (Telegraph 15 May) makes a very salient point regarding relationships: “our friends are our counsellors and confidantes, the sisters (or brothers) we get to choose.” I think that is well said. Don’t we all know the adage about friends and family?

I calculated I was in the Royal Free for a few days shy of a month, and shamefully there were members of my own family who were too busy to come even once. But to give them a sliver of the benefit of doubt – I am told they are possibly ‘just in denial’. Well I can say cancer is very real, and now 6 months down the path, there’s no hint of denial left in my mind. I must try now to be just a little bit optimistic, difficult though that is, for I have defied the odds given back in October 2018. Now I need to set my goalposts to the year marker – Rosh HaShana, whereupon my survival will be determined for the following year.

Now for the latest in health catch-ups. WHO (world health organisation) have identified 12 key areas we need to address to avoid dementia and mental decline. Here we go: Smoking, Excess alcohol, Poor diet, Social isolation, Mental inactivity, Diabetes, Blood pressure, High cholesterol, Obesity, Depression, Physical inactivity and Hearing loss. Around 850,000 people in Britain are apparently currently living with dementia, with numbers expected to pass the million mark in the next 2 years. So go on, let’s all play the Truthful Game! No? Ok – I’ll go first. Being completely honest, I can tick the box for diabetes [type 2 – thanks to my pancreas], physical inactivity [who am I kidding that all the housework, walking to the shops, and climbing stairs are really exercise or improving my cardio? I should be out power walking, and occasionally going to a gymn class. My excuse? Not enough time, and I’m frequently exhausted.] I won’t tick obesity. [But I would say being 7 kilos overweight is not good. Cynically I thought – if there is any upside to having cancer !.§! (and I thought the same pre-surgery) it was that at least I would shift some kiddie kilos, and look a tad neater. Not so.

Kenneth Hicks, 48, from Emporia, Virginia, was unable to attend his court hearing on drugs charges, as he needed hospital treatment. Hicks is 64 stone (406 kilos) and was to make his appearance in the loading dock. And I am still worried over my surplus 7 kilos.

Now for the baby of the month story, no – not Mrs Bina Cohen from Shirehall who has just celebrated the safe arrival of baby number 6 (sorry about that, if indeed there is a Mrs Bina Cohen!), but the much feted and awaited arrival to the house of Windsor. I love babies more than most, but I have felt quite irked by the faceless photo shoots of little Archie Mountbatten. Unless I’m missing something, every shot I’ve seen (including the critical newborn presentation to the press) has shown us a wee glimpse of the side of an ear or a tantalising nape of a neck. And recently a pair of bonny little feet sticking out obligingly under a shawl. And everyone coos and says “how adorable.” So what is my complaint here? Unless I’m losing my grip, the Royal Family are part funded by the public purse, and I think it very miserable of them to deprive us – the adoring public – with a decent, full face baby shot of young Archie. Otherwise it seems that all the good views are being reserved for the likes of OK or Hello. Please send me a picture of your new arrival over WhatsApp, Meghan.

And so now its action stations if we want to get a concert in the calendar! Anticipating a few surprises and new elements, in addition to catching up on the music we missed last December. Requests will be considered but beware, you may be invited to come to the microphone! If you missed the last one keep your eyes on the blog and the Jewish Weekly for updates.

Sigh. In the meantime it’s back to my chemo regime and drug cocktails. That should make the news!

Jacqueline x

In terms of my hospital roomies, or Inmates as I sometimes refer to them, it’s been a real mix. This time around I have Lottie, Patricia, Sara, Veronika and Amy.

Lottie was an established alcoholic in for de-tox, whose sole motivation was to escape the prison she felt she was being held in.

Indeed, she went AWOL several times, disappearing with her handbag, coat and a purposeful gait, which implied The Duck and Swan was within her reach. She was visited by her mother, a very elegant lady in her mid 70s. They could have passed for sisters, which was quite sobering, as the daughter was in fact only in her mid 50s. Sadly she also had liver cancer, which was yet a further debilitating factor in her life.

Patricia was a 65+ strong character who would disappear into the ward loo at night for extended drinking sessions, rather disappointing as she is on the waiting list for a liver transplant. She spoke slowly and pedantically, careful not to to trip herself up with unintentional slurred speech. She would stay up all night, indulging periodically in her secret proclivity, and in the interim sitting with her light on, emptying and re-packing her bags, playing with her phone alarm. When she realised belatedly I had not slept all night as a result of these antics, her answer was ‘Honey, you can always sleep during the day.’

Except that is impossible for me.

Sara was an overnight camper, unfortunately a very bad sleeper, taking a trip to the loo with her drip-stand every hour or so, and being unable to settle on the air-bed which was already aggravatingly noisy, even without a restless occupant.

Veronika was a charismatic and energetic Polish girl, who told us openly she was going through the Beis Din to join Klal Yisrael. She was not a cancer patient, but here for observation and review of a temporary ailment.

The last room-mate was Amy, a lady in her early 70s with 3 grown up daughters who came and spent time with her, dutifully but lovingly. She was in the final stages of advanced cancer and in a massive amount of pain. But she had the support of family unit, the likes of which one hopes to have when the time comes to take one’s leave of life. Even if – as in this instance – you are being robbed prematurely of your remaining quota of years. Her husband came most days as they were walking distance and seemed to know almost telepathically how to meet her needs.

*all names are changed.

NURSES

Many, many lovely nurses to mention here: Jennifer, Olivia, Binta, Eliza, Bridget and Mohammed being just a few; and of course there have been a few rogue ones who have slipped past their sell-by dates, such as Rachel, who laughed off every personal mini disaster as if it were the sole problem of everyone else in the ward or the hospital. Instead of it being her perpetual ineptitude!

DOCTORS

Aside from the renowned Kito Fusai who I’ve mentioned recently, lots of doctors have crossed my path, in many ways and from many continents. As a connoisseur of accents, I put my money on Europoly: the majority from Spain and Italy, with occasional western European outward bound tickets.

These people can all stay anonymous, being generally efficient and pleasant: save one individual, for whom I apply the sobriquet Peter Pan. He deserves a special mention in despatches. Dr Pan was quite a surprise to me, a veritable thorn in the side. In fact he would have made a wonderful match for Rachel, notwithstanding the 25 year age gap, and a religious-cultural divide: a Perfect Shidduch. Dr Pan was simply lacking in a great number of medical talents.

• When I was discharged from the surgical ward, he was happy to let me go, even without dealing with the cellulitis, the collection of free fluid pooling in my abdomen and the unresolved level of pain, telling me… If you have more problems, come back via A&E and we’ll see you straight away.

• When I then returned via A&E, he was the one who pottered down some 4 hours later, and then tried to make a new opening in my wound with a long cotton bud (causing excruciating pain) before giving up his mini surgery attempts, and then not coming back.

• He had a rather startling lack of bedside etiquette, marred by the fact he could be very rude, and also that he took it upon himself to sit uninvited on one’s bed, rather cosily and proximally inappropriately.

• He made an appearance in the ward later in the week, telling me I couldn’t go home for the weekend as he wanted to wait for the sensitivity report for antibiotics, which would definitely be in the following morning. Suffice to say, it wasn’t done. He assured me he could be reached via his bleep, but that proved futile, as was trying to reach the on call HPB registrar, who said every time she was disturbed….. “I’m busy.”

• When the staff were asked at handover last night where we had reached in terms of CT and antibiotics – the response was…. Neither had been followed up. So no progress.

DIET

OK. So I’m really cracking up now. It’s pesach, and me – who is not a Matza fiend – have been on a very limited diet, stuck in hospital. Having been been given a full dispensation to eat rice, beans, pulses, and a more tolerable diet this week, by some hand of fate, I have been compelled to continue on potatoes, more potatoes and crispy crumb style menus. What rotten luck.

Still one kind neighbour of a friend rustled me up a lunch of chicken, rice and wonderful salads which came as a pleasant surprise.

But we have survived the hospital kosher pesach menus, fine and dandy, and are looking happily to reverting to standard menus, with spaghetti, rice and savoury items now added as mains and accompaniments.

Enjoy, one and all

Jacqueline x

OK, we leave Royal Free Ward 9 West in good time for getting back to celebrate Passover and I arrive back at the ranch to see what has been accomplished in my absence. The house is suitably tidy-ish, with my Angel having left for her Easter holidays and my children have simultaneously undertaken an an Oath of Avoidance for the next 2 weeks, so we’re all set for Pesach – whatever that means…….

During my recent stay in hospital, I have the dubious good fortune to spend another birthday with NHS. I suppose it marginally beats HMP.

Another year older, another year wiser. Not sure I agree with that sentiment but certainly a year ago I had no idea what was in store for me over the year ahead.

Let me whizz through. In the summer term 2018 I continued with my various Governor duties. Summer holidays we returned to Buxton for our annual pilgrimage, this was at the point where I noticed some health irregularities, followed in record quick time with my diagnosis. Leapfrog over to YomTov and this is where my blog started. Chanukah and Purim passed in a blur, each clouded over by chemotherapy sessions and hospital appointments galore.

Returning home from hospital this past week, I pretty much take to my bed for 24-36 hours as I’m struggling to cope with anything. If making an occasional foray downstairs counts as exercise, my fit-bit should be scoring me bonus credits!!

I get through the lively, kiddie fuelled, first night Seder in extreme pain, and with lots of liquid morphine. I take to my bed preceding the second Seder, and top up religiously on oxycodone and oramorph. And still it’s not enough.

Second Seder was a most enjoyable affair, but I had to retire to the sofa half way through the evening as pain is winning all contests.

Finally we decide to head back to the hospital, where I am left for 6 hours without any water, pain meds and just one visit by a junior doctor. This one decides to try the initiative test – undo some staples, force a swab stick into the now closed and healing scar, to ascertain if he can reach the area of disruption/ cellulitis, to try and take the pressure off the wound which is now rather scarlet in hue, and cannot even be touched. Suffice to say this is a complete failure (despite his insistence to his Reg, ehemm, that he has done this successfully in the past.) Oh yes !#?

He comes back with a plan…

1. To scan and see if indeed the original area of haematoma [scanned over a week ago] is the same or is spreading back towards the surgical stitches.

2. If yes, then to make a new wound, and drain the cavity from that angle, on the assumption that a fresh wound heals better than an older one. That sounds reasonable. And – he assures my somewhat skeptical face – we give you an injection so you won’t feel a thing!

Oh my! I feel massively reassured now. I am transferred finally to Ward 9 North upstairs.

At around 9.30 in evening a Registrar comes to pay a call. If nothing changes over the next 36 – 48 hours, he says, they will do the scan and consider next steps. 48 hours before the scan. I ask if he’s kidding?

They had 10 days to get to the botttom of this pain and discharged me with signs of inflammation or worse. Now I am supposed to schlepp it out over a bank holiday weekend and not mind being deprived of my kids company. Well, I do.

If the delay in seeing me, or rustling up the scan, was because of my tardiness in dealing with the cellulitis, I guess that could be expected. (but I didn’t delay)

It is not acceptable to have me to occupy a bed for 24-48 hours because they are now short staffed, or somebody might be on the Fairway. There has been no ward round, no doctor in sight, no follow up on my staples being removed, no hint of a scan or of me escaping this blinking place.

I believe my younger kids are having a day out with dad, going to look at the seasonally apt Egyptian Mummies; I’m having a day ~ confined to barracks.

Don’t you just love the holidays?

Jacqueline x

OmG. So I have a major surgical wound but no benefit of surgical resection. Entirely like having a caesarean section with no baby to present at the end. Only we’re actually leaving a malignancy behind.

Joking very much aside, I look like a train wreck and feel like I’m back at the start line, clueless about options going forward.

Go on then, those who think this impossible : I defy you to consume a whole bottle of Bartenura, 10mg of valium and then hold up your end of a conversation with the dentist attending to your child.

I found myself ringing several departments of the Royal Free to cancel an ENT appointment for one of my twins (yup, the one who had tonsillitis in an earlier blog) whilst she sat in a chair for 2 hours of reconstructive dentistry. Explain to the appointments clerk, if you can, that you’re:

wonder if my children will appreciate how unwell I actually am?

I move bed bays for my end of stay in hospital, still needing reasonably strong meds for pain across the pancreas site. I’m told I’m probably going home in a day or two, to enjoy much needed tlc. [MatzaAid:- don’t they know its pesach?]

On a happier sporting note, Tiger Woods won his 5th Masters title, 14 years after his last win. This, despite undergoing several major back surgeries, enduring some significant life events before admitting he had messed up and retired from golf indefinitely. After a significant break, Tiger returned to his sport, and continued to be the leading American golfer of his day, having clocked up an impressive 81 titles during his career. He is one of only five players (including Gary Player and Jack Nicklaus) to have won all four major championships in his career, known as the Career Grand Slam.

I think I can hear the door of the Ward slamming and the Matron calling “lights out!” so I’d better sign off.

Being accepted for surgery, you would think you’d put the bunting out, enjoy a dash of chardonnay and throw a party. Well …. I won’t be doing any of those things, not yet at least.

The surgeon was mindful to stress that this is extremely major surgery and my risk of dying (within the post-op window) is 5%. Other risks are not insignificant, but another potential setback could be on initial look-see he cannot proceed and the operation could still be cancelled. How so, you ask? The answer is that there is an artery close to the tumour which could make removal untenable. There might be signs of tumour spread somewhere previously unnoticed. I have to hope with all my heart that this is not the case.

One other issue [which I was unaware of until this week] is that the pancreas have atrophied, through compromised blood supply, so there is also a possibility he will remove the whole organ, rather than just the tumour at the head. That would circumvent some complications, but render me totally diabetic.

OK, so I’ve previously talked in my press articles about sugar, diabetes and insulin control: I’m not at all scared of becoming completely diabetic, it’s a price I would willingly pay to survive.

Positive news is that my surgeon – Giuseppe Kito Fusai – has given me his permission to live well over the weekend, enjoy a glass of wine, and have fun. I will certainly try!

But it’s plainly too late to worry about all the downsides. I will sign my consent forms and trust that my surgeon is guided by G-d. He has a track record of many 100s of complex major HPB surgeries–so we won’t do better than this.

When I wake up, I will either feel I have been hit by a 5 tonne truck, or I will be able to leap off the bed, in which case surgery didn’t happen

So for my preamble I take a sleeper train north on Thursday night to make an overdue trip to family, seems the right time to put them in the picture. Great night’s sleep although vivid dreams, as usual.

Started the early morning by entertaining the locals – there is a play-me piano in the station. So I give a rendition of Elton John, ABBA, Rachmaninov and Bach.

I then head into my favourite store John Lewis, and potter around. Chatting to a lovely assistant in the cosmetics department we start talking about our various artistic children and she gives me a hug and wishes me good luck for my surgery.

I speak to a friend (GP) about the surgical team including a drug called Pasireotide in Pancreas surgery, which is supposed to lesson the risk of postoperative pancreatic fistula, a very serious complication. In the context of resection the associated mortality rate is very high (10–40%). That is quite disturbing.

Appraising my family members of my impending surgery, we have cleared the air, and of course I regale them with jokes a-plenty to defuse their obvious anxiety. I tell them with such a handsome Italian surgeon G-d has put me in expert hands. Being serious, the surgeon is extremely experienced and has a compendium of many happy survivors. I have given him my promise that my next Fundraiser will be dedicated to his pancreatic cancer charity, all being well – in June 2019. Seems only fair!

My return journey is uneventful, however unfortunately there are no sleeper berths available going back, so I have to take a coach and read on my journey.

This takes me into Surgery day Minus One…. and a chance to spend a bit more time with my family before heading out to the surgical unknown. Met up with my friend Jodi for a catch-up over lunch, and positive vibes for tomorrow. We’ve made a deal to go to NY if & when I make a full recovery. You betcha!

Going to have a little dinner later with some close friends, since my dinner ‘menu’ is likely to be limited for some time. A surprise item for them is a little music band & choir who will come to entertain us – thanks to dear friend Ruti who organised that!

The band and singers were magnificent. Such a surprise for my dinner hosts – Carlebach singing, beautiful music and inspirational words too.

What a way to end an evening.

However I will sign off now, leaving my blog suspended for a little while.

Unequivocally I now put my life in the hands of the surgical- medical teams, the tefilla groups and most obviously… G-d.

Until next time

Jacqueline x

So finally we reach the definitive Scan, four weeks from my chemo #7.

A PET* scan to determine if any micrometastic cells have escaped their prison and made a break for freedom. Pesach – is approaching, and I would like to see MY freedom from servitude to this evil adenocarcinoma.

My nerves are totally frayed this week, like a kitten on a wire, and along with it comes my awareness that my train has reached a T junction dead ahead:

Left – the oncologist awaits to dispense his palliative chemo-radiation.

Right – the surgeon beckons those lucky clients to his table, cutlery and steel implements gleaming in his hands.

I start my Scan day at the chemo unit where I am decidedly overdue a dressing change on my picc line. By now it’s looking tatty and practically falling off. The guide-lines are visible, and have increased from a borderline 4, to a point (8+) where the picc is no longer capable of functioning for chemo infusions. After a cursory look, the nurses agree it needs to come out. See below:

This is already my second picc line and – in the absence of having a third arm to offer – I’m hoping I won’t need another one. The insertion of it is quite unpleasant even with a regional anaesthetic.

From there I present myself in Nuclear Medicine to have the scan. I am injected with radioactive glucose, left to cook for an hour in a little cubicle. Then I am invited into the scanner room, which is just a few degrees short of a fridge, and finally moved in and out of the scanner machine for 20 minutes. The scanner bed is vaguely reminiscent of an autopsy gurney, but I try to think only positive thoughts and wish my tumour away.

When I finish I meet my friend – aka the Balloon Lady – and quickly consume a sandwich and a drink, as its well past lunchtime and I have been fasting since the night before.

All attempts to speak with my oncologist fail, so we leave the hospital unable to explain my anguish at not wishing to present in the surgery clinic a week later only to be given bad news.

At least I can minimise the agony by finding out timeously.

I am then unexpectedly given a provisional date for surgery, even in the absence of knowing if I pass or fail the scan. Seems bonkers to me.

Two days post scan I am still waiting for results, with the weekend looming ahead. I feel uneasy that the hospital are intent on making me wait to their intended appointment, unnecessary though it feels, and regardless of the stress it inflicts.

So we climb back on to the distraction waggon , including going to a beautiful wedding hosted by some neighbours. Very kind of them to invite me, although any efforts to subjugate my sugar cravings were totally wiped out by Mr Reich’s delectable desserts. I also got to catch up on their daughters – it’s just scary how fast they all grow up (…. as we grow old!!)

Three days post scan (heading into the weekend) and there’s still a news blackout regarding my status.

Reluctantly I am forced to email the two consultants, as I feel I’m getting nowhere.

I get a reply from my oncologist indicating that he is away, can’t access the system and therefore we must just review next week at clinic. The surgeon says he has to see me at the appointment to discuss.

And zero comms from the specialist nurses who promised to call when the result was known, and are supposed to be my advocate. What a joke!

Bureaucracy: 1

Patient: 0

I’m still worried…. and I feel I’m just an insignificant, irrelevant cog in their wheel.

REMAIN

The judges have delivered their verdict, surgery will go ahead. In around a weeks time I will go under the knife. Initially they will do keyhole to check nothing unexpected lies within. If all goes to plan, they will proceed straight into major surgery which will offer me the chance to claw back a few extra years. Not a lifetime; not even until official retirement age, but a few years.

From a surgery perspective, I should be in expert hands for around a 10 hour surgery; predicted to spend a few days in ICU, possibly a couple of weeks in hospital, and then a slow and painful recovery. But it is no contest to the alternative which is to take my leave within a relatively short time.

I have been considering all the pluses and negatives of having surgery since the last clinic appointment:

PLUS

Remove the tumour

Lose weight

Look better

Lose the pancreatic induced diabetes

Be able to wear my clothes, back to my previous size 10

Spend more time with my children

Have a well earned rest whilst in hospital

Positive blog from my bed

MINUS

Risk of dying 1:20

Risk of haemorrhage: infection & sepsis: wound debridement, and pancreatic fistula.

Struggle with many food types for rest of my life

Require replacement pancreatic enzymes and meds to control insulin

Be left with several stomachs after weight loss (need more surgery!)

Potentially look thin and gaunt

Recovery time may be longer than the expected 3 months.

In both scenarios I wonder ‘will I make the intended holiday with the kids in the summer?’

Jacqueline x

*positron emission tomography

Poem : The ‘eyes’ have it

A thousand thank-yous to the team

Who work alongside F D Green

Who’ve found the patience and extra time

For sorting out these eyes of mine

Visit them then, if you’re astigmatic

Or find perhaps you’re monochromatic

They’ll help you out with your glaucoma

Or if you’re suffering from trachoma

I hope I won’t have many more visits

Or take much more of your valuable minutes

I will – of course – take all your hints

And do my best for no more squints

Written 1987, and presented to Frank Green, Head of Ophthalmology at Aberdeen Royal Infirmary

The above poem was written following eye surgery I had all those years ago, and having recently found this poem, it reminded me of one of my friends from high school.

I grew up in a normal middle class suburb, attended the comprehensive non-denominational school and learned to get along with everyone. Well, pretty much everyone.

One of my good friends – Elspeth – from school, studied ophthalmic optics, got married to her childhood sweetheart, and we kept in touch through our various life journeys. She had a couple of children, and led a happy family life. We met up a few times a year as she had moved to the south, ending finally in Bristol.

But her path was to change course dramatically. Having a mother who had survived breast cancer, she knew she was at risk herself. When she was diagnosed in her 30s she took it all in her stride: surgery, chemotherapy. However this horror was not over. After a period of remission the villain returned with a vengeance and roared its anger into her bones and finally her brain. It was a horrific and ugly end to a decent & beautiful life. She died aged only 40, and as a final mark of love and musical respect, I played the organ and sang an Enya song [Anywhere is ] at her funeral. Her mother, her family and her siblings were in attendance.

Cancer was however still a relatively abstract disease which was on people’s lips, and I recall losing several friends to hideous and aggressive forms of it. Two of my music teachers lost their battle – one to spinal cancer and the other to (if my memory is correct) liver cancer. The latter was my accordion teacher, Jimmy Blair, to whom I used to go once a week for a group lesson and then on a Sunday for band practise. He had a Junior, Intermediate and Senior Orchestra. We used to take part in festivals across the UK and frequently were the trophy winners. I have a recollection of the Advanced Orchestra making a 45rpm of American Patrol, with superlative drumming throughout, and the orchestra enabling the Patrol to fade away into the distance at the end. It was marvellous.

He taught his students classical accordion and I took lessons from the age of 7 to 15. By age 13 I had completed my grade 8, but was then still too young to sit my Teachers Diploma.

That was essentially the reason I reverted to piano, ultimately leading to professional training at the Academy from the age of 18.

Jimmy Blair had run a dance band of his own for an eternity, and was revered in accordion circles. He was a musician extraordinaire, whose wife also taught accordion, two of his sons played, and the third son was the drummer for the orchestras. What a family!

A picture scanned below of him and his junior orchestra c. 1974.

I remember his sudden decline, which was around 6 years later – a robust and perennially larger than life character. It was terrible to witness.

You never dream you’ll be facing something similar yourself further down the line….

[did you find me in the photo? I am in the front row, second from right. His drummer son is in the back row, second from left]

Checking in at King’s Cross recently, the clerk told me her brother in-law had contracted P-C. Then she told me he lived only 4 months.

My brother in law mentions his best friend was diagnosed with pancreatic cancer and only lived 5 months.

Hey. Enough! I’ve reached 6 months (from my random discovery) and don’t feel I’m going anywhere.

So who is running my ticking clock??

I’m reminded that I had a couple of beautiful antique mantel clocks which chimed on the hour. We had them serviced in a specialist repair shop in Tring, but still they didn’t seem to keep regular time. Frustratingly, they got consigned to a cupboard and I haven’t heard their dulcet tones in a very long time.

To do my best to fight off my own Demon, I have been learning from a Sefer called Zera Shimshon by Rabbi Seltzer – many people have had a segulah from studying this Sefer and – as I do believe in miracles – I will continue to invest in positivity and emunah (faith) that the course of one’s life can be changed.

There is a lot of literature expounding the power of prayer – our community have been saying tehillim for months for the recovery of people like myself, and I believe this has saved me from an accelerated demise. So let’s banish those demons, and ask G-d for one extra miracle.

Scan approaches. Surgery to be confirmed.

Jacqueline x

These past few weeks I feel I have gone through the medical mill, with appointments with Oncologist, Surgeons and nursing staff. Nothing final confirmed about our next plan of action, but as an unexpected reward (!) I am allowed a few weeks off chemo.

This is great news as I have a few social calls I need to make. Flying visits (if allowed), subject to last minute booking costs, maybe a few nice days out, and hopefully some quality time with friends – which I’ve been looking forward to for yonks.

But going back to the medical ‘bits and bobs’ – I am both excited but apprehensive to know that the Surgical team have provisionally penned me in for the Whipple procedure, which is where they cut out some of the pancreas, some of your stomach and duodenum, your gallbladder, and then they stitch you up again, joining up whatever organs are left. However sometimes when they open you up they see the tumour has spread and the operation is cancelled!

Diagram of the Whipple is below:

In the interim there is one more important Scan I have to pass – so I remain cautious and on shpilkes to find out where my fate lies.

It’s massive surgery, but in the famous words of the Bear Hunt…. “I’m not scared!”

Really I’m not; I’m much more scared that without this surgery I will be counting down my survival in months, not years.

I held my anxiety at bay for several weeks prior to the surgery appointment but since then this new waiting game is derailing my head somewhat faster! Feels like I’m in the last month of the pregnancy waiting game. (of which I’m considered a veteran)

So my friends advice is to fill my time over the next week with fun things.

Last weekend – as an example – my twins belatedly celebrated their February birthday with a trampolining party for all the girls in their classes. It seemed to hit the right note – and hey, do they grow up so fast.

But looking at the week ahead – I’m going to stretch it out with my regular Art Class, a concert to hear Brahms 1st piano concerto, a meeting at Chai Cancer, accompanying a close friend to an appointment at Guys Hospital, Purim megilla and rounding the week of with our annual Purim party at the home of very special friends.

That brings me roughly to the end of the ‘waiting’ week. I have reluctantly decided to defer my plans to travel, as I’m very stressed about the Big Scan – upon which my life expectancy seems to hinge.

Aside from all that – it’s all pretty good. More updates if anything changes.

I hope you all have a great week too.

Jacqueline x

By now I’m an old hand in the chemo unit. You know most of the staff by first name and they have in my case gotten used to calling me Jacqueline, despite a pre-nom which always catches them unawares. Many times I have my good friend there, Rosena – known to the staff as the Balloon Lady. Bringing a little bouquet of flowers, in charming assortments of colours, the staff are on best form, in anticipation of getting a flower favour on our departure.

This week the chemo infusions were much delayed, as apparently the pharmacy are struggling to keep up with the demand in the day unit, and instead of starting at 9am, I was – for the 3rd time running – clocked in at 11.45. Time stands still for no man, but in this case you are sitting still, watching life passing you by. How frustrating!

I start my week with an appointment at UCH in a different clinic to oncology. I’m told I might need a spot of surgery – the question is whether to do it now (before any change to my chemo) or some time later (and hope I’m actually still alive). This is the NHS after all. There are deadlines and waiting lists, longer than your arm. Actually I discover that the one thing even longer than your picc line is the Hospital Pharmacy Queue. Over 2 hours for a relatively simple prescription, in my recent sojourn : I think I could have had my minor surgery in the time I waited. Heaven help the person 30 numbers behind me in the queue, who must still have been there at shutting up time. I think the staff might live in an alter-reality, perhaps inhabited by one or two people behind their Narnian divider. Maybe they have a second job, which would explain why ticket number 429 takes 15 minutest to process, and the chemo suite are 2 – 3 hours behind getting meds for their patients!

I get all the usual side effects this time: numb tongue, mouth ulcers, frozen hands and fingers AND feet. This has the knock on effect that I frequently trip as I can’t feel sensations in my feet properly.

So hoping I am going to get off this chemo merry-go-round soon. Up- Down – Up – Down……

I am prepped to see the surgical team and the oncologists again. Wouldn’t I like to be a fly on the wall! All I pray and hope (along with many hundreds of others in my community) is that the cancer is quiet, and I will be afforded the life-saving surgery, which is the only curative solution.

Very naughty – today I took a look at life expectancy from different range of cancers. Here’s the results….

So pancreatic is about the worst you could get. Prostrate and Breast (respectively men and women) are two of the most survivable.

The Office for National Statistics says: Pancreatic cancer had the lowest 5-year for both men and women, at around 2:100

Which explains why I meet so many second-timers with breast cancer in the chemo unit (I’ve met around five) and very few pancreatic patients (I’ve met one)

Since beginning my blog, one of the ladies I met (whilst in hospital back in December) has just passed away. Just this week I got the message as I was heading for my appointment. She was around my age, with oesophegal cancer. It was yet another hammer blow to remind me of my own vulnerability.

So how do I deal with the daily dose of reality? I pass some of my time attending a weekly art class, playing my piano (occasionally – as the neuropathy is dreadful) and I should be doing more to get a respite from the daily drudges.

I have just completed my girls’ choir event – to an audience of perhaps 500 in one of the large school venues. Was a great evening, with a variety of music from different schools, but I was relieved that all the hard work for our own group paid off, and they raised the roof. Was a real surprise to get a call-out from the wonderful organisers Malka Davidoff and Della Blum, who I have worked with over the past 12 years. Everyone wants to be recognised and I want to make it to next year’s event.

The choir are pretty much good enough now to make a recording (as I say each year) but it needs to become a reality, especially as my days may be limited and all my previous material/ repertoire may be lost when I’m gone.

I also need to get a complete detox and get off the cancer fuelling refined sugars and carbs which we are all guilty of sinning with.

I have read so much of the benefits of juicing green vegetables, high dose vitamins, cannabinoids and critically burning oxygen by exercising to halt the division of the cancer cells.

Scientific point here: Normal cells love oxygen but cancer cells do not – they prefer glucose (sugar).

Oxygen provides far less fuel for cancer cells than glucose (only 2 energy molecules instead of 36 with sugar). This is well known from the research of Dr Otto Warburg back in 1931, which earned him a Nobel Prize.

Oxygen therapy might be worth a shot. And aside from that I think its the dead- end for sugars and beginning of pavement pacing. Anyone fit who can give me advice on exercise – please be in touch.

In terms of all the other lifestyle options I’ve described, I think its now time to grab them by the horns.

More in the next blog

Jacqueline x