After receiving a diagnosis of Stage VI cancer, Elaine began to keep a diary documenting her journey.
In August 2023 I was given a diagnosis of Stage IV pancreatic cancer with multiple microscopic metastases on the lungs. It was a devastating blow to me and to those who love me.
So, did I arrive at an acceptance of my condition from the bleak news with which I was confronted in August 2023? How is it possible to absorb such cruel information without prior warning and with only dread as one’s companion?
The answer is different for every person who encounters any life-threatening situation, and the result differs according to choice, circumstances and serendipity.
I haven’t got an answer. I have got a story to tell, one which I pray will have a good ending and will be of help to others.
Chapter 1
In August 2023 I was given a diagnosis of Stage IV pancreatic cancer with multiple microscopic metastases on the lungs. It was a devastating blow to me and to those who love me.
So, did I arrive at an acceptance of my condition from the bleak news with which I was confronted in August 2023? How is it possible to absorb such cruel information without prior warning and with only dread as one’s companion?
The answer is different for every person who encounters any life-threatening situation and the result differs according to choice, circumstances and serendipity. I haven’t got an answer. I have got a story to tell, one which I pray will have a good ending and will be of help to others.
Chapter 2
So, all I had really every wanted to do was travel the world after I retired in 2006. I hadn’t had the career I’d expected, but it had been a richly rewarding one. However, I wanted to do more travelling than we had previously had time for. I assumed it was mutual, but my husband Richard wanted to continue working and as he was only 50, it seemed that waiting was the best option. I took a few short-term jobs and decided that if I was going to do anything it would have to be writing.
Joining JLife was both a coincidence and a pleasure; a couple of short pieces I submitted were accepted and, as their editorial views and mine coincided, I considered myself lucky and simply carried on. In between retirement and writing I had a serious brush with breast cancer, which both scared and challenged me, but within a year I felt well and very happy with life. Parent care took some time out of the week and my beloved grandchildren the rest. Nothing could be better.
We decided to move, downsizing to a manageable flat in a lovely complex, nearer one of the children and began thinking long-term about places we hadn’t visited and what we would do when the dreaded COVID restrictions were lifted… but then that’s when I began to feel unwell, bloated and lethargic.
Unable to ignore the results of blood tests taken during the annual check-up provided to carers for which I qualified due to my mother’s frailty, I also could not shake off the intermittent dull pains which plagued my abdomen and midback. I began to take seriously the letters from the surgery stating that I had become pre-diabetic and finally type 2 diabetic. In August of 2023, I began to feel unwell more often than I felt well. Refusing to go straight onto medication for diabetes I found myself unable to get even small tasks completed, due to lethargy and an inability to control a constant thirst. In short, I felt decrepit and unable to control my whole digestive system.
Returning to the diabetic nurse at the surgery after more blood tests I was glad that she took my concerns seriously, but worried when she made an appointment for the next day with one of the doctors, after all the only pain I was getting was a miserable ache roughly under my ribs and a sort of stabbing feeling in my middle back. Feeling a genuine fraud, I was extremely surprised, but a bit relieved when the doctor referred me for a scan at another health centre. Wouldn’t the result clear things up, I thought.
Still tired, looking back very tired, I turned to Google to solve the problem. Surely if I knew what I had I would know how to deal with it? What a dire mistake. Confiding in my husband and adding fear and confusion to the tiredness and aches, I worried when I was called back for the result of the test. This time Richard came with me. He had looked online and could only see one or two conditions which matched my symptoms and didn’t like the look of either. I was sent to Salford Royal Hospital the next day where a further scan revealed a mass in my pancreas and then a biopsy followed at Wythenshawe Hospital and an MRI scan.
These tests confirmed that I had a tumor in my pancreas and a spread to my lungs, although these were tiny by comparison. The realisation completely poleaxed the pair of us. I started to lose my ability to take in information properly. A hundred questions, fears, and thoughts crowded into my mind as I struggled to obey the demands of a simple NHS questionnaire. How did I want to be addressed? Was I pregnant? Who was my next of kin? Did I understand what the purpose of the biopsy was? Well no, obviously not. Should I be researching online? Should I avoid the doom scrolling that accompanies anything which is out of anyone’s area of expertise? Should I be telling the children? What does inoperable mean?
At this point my stress levels were so high that I missed the difference between inoperable and incurable and put the worst possible complexion on the word palliative, while Richard stared at me in quiet reassurance, calmly asking questions which were barely forming in my mind.
The aches were becoming more pronounced, the tiredness almost overwhelming; the fear definitely so and my ability to understand anything about pancreatic cancer and how to stop it encroaching on the rest of life became nonexistent. We were in the grip of a nightmare.
We began to tell family and friends and talk about how to cope. I had contracted a very severe infection during my NHS treatment for breast cancer and so we took the decision to use our private health care cover with Bupa as this provided a fast-track appointment with a Consultant Oncologist within 48 hours. While Salford Royal had treated me well when I went for the scan, I wanted to go to the main Christie Hospital in Didsbury. Its reputation is second to none and that, I think, was the last decision I was able to make for the next few months.
Chapter 3
I had the referral, but who to ask to see? The problem I had with private care was simple: you can have anything you want and consult anyone you want as long as you can pay for it, but I had no-one to recommend one consultant over another. The diagnosis of pancreatic cancer comes too late for most people and, as the internet is so fond of telling the vulnerable, the prognosis is very poor. I became convinced that I had only months to live and Richard had to witness this, make all decisions for my best interest, and protect me from the avalanche of well-meant advice, phone calls, flowers, and sympathy which followed as word spread about my condition.
But how was I supposed to look after my mum, keep seeing the grandchildren, socialise with friends and carry-on sending articles into JLife, as well as keep the household and my hopes alive?
After one day at the end of August when we answered about 40 calls between us and repeated the story so many times, I lay on the lounge floor and sobbed. It was going to be impossible. I had thought I had time, thought I could control everything that came my way and now this. The lyrics to Paul McCartney’s Yesterday played in my head: I never thought I needed anyone but now I’m not so sure… now I find I’ve changed my mind and opened up door.” Over and over again.
‘How had this happened?’ ‘What could I do?’ ‘How much time had I got?’ These thoughts pounded me. And in particular: ‘Who could help?’
Richard was helping, of course, but this wasn’t a one-person job. He left me at home confused but needing to keep an important appointment and I lay on the settee, trying not to give in to despair, when he called me and said he had asked a dear friend and mentor to talk about what had been going on.
That dear friend and Rabbi asked to speak to me in ten minutes when he could get to a safe place to make a call. Taking the call, I cried and cried even though I knew he had gone through his own battle and rounds and rounds of chemotherapy stretching over years and who I had almost lost touch with. The enormity of his illness and the strength of his faith embarrassed me to the point where I felt I had nothing to say to him beyond wishing him well and making small talk about his ever-growing family. It was a relief to know he was still alive and that he was able to withstand my torrent of fears, but I couldn’t even articulate that. During the conversation Richard came back and put me to bed, finishing the conversation and letting me know that our friend would ring back soon.
To this day he has phoned every week to speak to me and reassure me, and the old clichés ring true. I could not have done this without him. He saved my faith and my sanity.
Richard looked relieved when I woke up. He had spoken to another dear friend whose role as carer for her husband had given her an insight into what he was going through. They and my family and friends formed a tight circle around me, preventing emotional overload.
Then serendipity truly intervened. A person who had worked for us for years had to be told what I was going through and that we were trying to find some background on the consultant we had been allocated at Christie’s. Someone in his company had a partner who worked in that department. She obtained some information and without betraying any confidences told us what I desperately wanted to hear. That he was excellent, superb, and if anyone could help it was him.
At that point I was unable to take in any extra information. I just wanted to know that someone, somehow would give me the best shot at staying alive and that he was going to do it now.
One of the questions fired at me by the NHS during my treatment for breast cancer 17 years earlier had been: “What outcome do you hope will be the result of your impending operation?” For me this was the single most insulting question I have ever been asked. Of course, I simply wanted to be ‘cured and quickly’.
My daughter has a lot of medical knowledge and so she came with us to the first consultation, but I couldn’t take anything in apart from being told by the consultant that he would be able to offer treatment which, with this condition, isn’t always the case. He recommended that chemotherapy should start immediately. They took notes and I was assigned a dedicated specialist nurse who was to stay with me for the foreseeable future and all I really remember was that she had a peculiar surname which would be quite hard to pronounce. I had no question that I could form and there seemed to be an eight-foot wall between myself and the other people in the room.
Chapter 4
From diagnosis to Day 1 of chemotherapy took around a fortnight, during which minutes expanded into hours as I struggled to cover every eventuality which my desperate mind threw out. Knowing rationally that I could not hope to anticipate everything did not help. Every pain, movement, fragment of knowledge made things worse.
Memories of the boredom, fear and depression which had accompanied my breast cancer treatment 17 years earlier returned, this time with added magnitude – pancreatic cancer was lethal. People didn’t usually survive for more than three months. That was the thought that kept hitting me.
I stopped doing anything non-essential and began to put my affairs in order, checking my will, making sure that there would be enough people to visit, feed and spoil Mum as I had been doing for the last few years, glad for the first time that she had lost her sight so that she would not notice my rapidly changing head coverings. Grateful too that the carers at the Beenstock Home were so wonderfully attentive and that, day or night, she would never be alone or lacking attention.
I stocked up her toiletries, head coverings and, most of all, her chocolates drawer. Maltesers were her drug of choice, and she was forever complaining that someone was stealing them! I told her I loved her and asked what the best moment in her life had been: “When I picked up a tennis racquet and realised I could play,” she said. I let her go, knowing I could do no more. From then on, her care was up to the girls, my job was looking after me.
I bought my cosmetics and treats, the books I anticipated reading while taking the rest of the treatments and meditated on the words ‘patient’, expecting that it would bring me solace. It did the opposite, carrying up to my conscious mind associations of inertia and invalidity, of acceptance and dependence on others, all states of mind which I loathed.
As a child my ‘favourite’ state had been one of boredom, of tagging along while parents made decisions about clothes, visiting relatives and friends on holiday and of watching my brothers fight over anything from who made the worst smell to whose turn it was to ride the battered three-wheeler bike which the three of us owned jointly.
In those moments I could drift off into the world of characters I had met or encountered in the books I had read avidly at the local library, searching for characters with whom I could identify. There were some who I partially aspired to be, others who I wondered what it was like to be but not one whose background fitted mine. No single Jewish girl whose parents worked hard to bring them up, whose brothers fought or played sport all the time and whose only real treat was a trip to the library, or a new jumper knitted by her gran.
There were no Mallory Towers girls that I knew, no Wendys who met Peter Pan or pirates, nor were there female equivalents of Biggles or Jennings. Ballet was not an option, nor were pony clubs nor saintly Victorian do-gooders. I wasn’t athletic and beautiful like my mum, all I had was books. And the search for my identity. Jewish, bookish, and obedient. I couldn’t find any of these characters in the books I borrowed week after week.
The only glimpse of self was during the walk to and from synagogue with my father, listening to him discuss matters of the day with other congregants and wondering what it would be like when I grew up.
At senior school I was bright enough to go unnoticed and lacking in any talent sufficient to get me into a stage show, into a choir, or art club. I got into trouble only once, when I was caught collecting enough money from my friends to go out to the local deli to introduce them to Haimshe pickled cucumbers for which I was reported to the headmistress, Miss Thompson!
And then in my second year the neatly arranged tool shed of a potential life exploded. Never to be returned to normality, never to progress in a straight line again.
Chapter 5
By that I meant that just as I was feeling my way towards adolescence, going fearfully to the local Jewish Youth Club, saving for records and even going across London with my best friend to museums and exhibitions – in short, just as the world was opening up to me, my personal horizon was slamming shut. My father died swiftly of cancer, aged 46, leaving my mother a widow with three children and little family support.
My personal life changed completely. Along with the whole family I was whisked to Hull, my late father’s family home, and I had to learn swiftly how to make new friends and schoolmates and get used to being part of a declining Jewish community, having left behind one of the most vibrant communities in Western Europe.
I mention this because it has a bearing on the way I reacted to the news of my cancer diagnosis. Aged 13, I had already learned that life can change in an instant and that back then I had at least had a few months to take in the fact that my dad was dying. By 14, I had learned that adults can find new love and that the reasons for that were often more practical than romantic and that only death was a final certainty.
These truths were never more useful to me than during the first stages of chemo. I was undergoing a growing grueling regime which left no space for relaxation. My support was wonderful, but my situation was dire. So I drew, and am still drawing, on the resilience I learned then. Whatever I was offered I took with gratitude, even if it sent me sky high, like the steroids given to stop me being sick, or the painkillers which stopped me going to the loo for days on end and the other tablets whose name I couldn’t remember nor of whose purpose I had any idea.
Sometimes ignorance is bliss. Sometimes, however, after hours without sleep the hotline, which was available throughout the night to anyone receiving treatment for cancer, was so important. I hung on sometimes just praying that someone would answer. When they did and I was able to talk about the pain/problem/fear it seemed to go back into proportion. Sometimes the advice was straightforward, but I was never made to feel a nuisance. It is a truism that things always look their worst at 4am.
By mid-January I had undergone five rounds of Folfirinox and was beginning to feel utterly exhausted, but by then my mum, whom I had barely been able to visit, was so ill that I was told she would probably only last another week. While this was expected at some time, there is never a right time for a person to die. By the beginning of February, she had passed away, with her three children by her side. My brothers and husband had had to take over much of the organisation of the funeral, but I was determined to be there. Our rabbi was exceptionally helpful and, knowing the circumstances, the new rabbi of her shul shared the burden of the Hesper.
All I had to do was allow events to unfold and try not to let it affect my treatment. In retrospect, it was the wisest thing to do but inertia just magnified the surreal experiences I was undergoing. Like all Shivas it came and went without event and on the final evening my son-in-law’s parents and the two Rabbis involved offered Richard and me a wealth of comfort just by sitting and talking as caring people do.
Four friends arranged an online bridge date every Tuesday, and I always looked forward to it, but between the morphine and the steroids my sleep pattern and memory was shot. Keeping up with a routine helped life seem normal but my job was to stay out of pain and sickness, so we just tried to do as best we could. We went out if we could, trying to keep as close to a normal routine as possible and planned a holiday for when the twelfth round of chemo was over to Lake Maggiore.
A further six rounds of the same chemo bought me up to Purim, just before which, due to dehydration and exhaustion, I was readmitted to Christie’s. There was so much I didn’t remember about those five months that it’s possible my mind was just trying to protect me from the memory.
Friends bought me books, I still have them, saved for when I could concentrate or abandoned them halfway through. I tried journaling, for much of my life a compulsion, now an impossibility. I went to a few gatherings when I was able, I became addicted to Emily in Paris – a daytime treat, saved for after our evening meal – and Ted Lasso – a night tight time treat saved for when I couldn’t sleep – along with other less memorable series. Plot lines defeated me, characters’ names eluded me, and on a practical level I mislaid phones, keys, handbags and numerous possessions. The same rules applied as when I was sitting Shiva. Do nothing and that way you can do nothing wrong.
Relying on your loved ones is hard when you see them getting tired and irritable with one another whilst forgiving me but often trying to do more than I could meant I needed regular respite stays in hospital.
Chapter 6
A new possibility came our way at the end of a very depressing second attempt at chemotherapy. SABR, Stereotactic Ablative Radiotherapy, a treatment established in the USA, but less widely available in the UK due to cost and availability, was offered to us by our consultant. Used in the treatment of prostate and many others cancers, as well as pancreatic, the process involves focusing two beams onto the tumour guided by a live MRI map of the patient’s body and only active where they both meet. In my case that meant that it could avoid the many organs which are close to the tumour site and which would be damaged by the very intense doses of radiation used.
We were told that its effect lasts up to a year, but can’t, at present, be repeated on the same site. Still, a year seemed a good amount of time, and the offer of availability, subject to fitness, another minor miracle. We smiled at the consultant and unhesitatingly accepted: “You will have to go to Oxford,” he said hesitantly. “Oxford Road,” we both smiled and said in joint agreement. “No, no. Oxford – the town, the place – Oxford,” he explained to our slowly comprehending selves. We looked at one another, me in hope, him mentally calculating where we could stay, how close to the hospital we would have to be.
“Of course, you will have to find your own accommodation and you will need five sessions, which means attending for an initial mapping MRI and then returning for at least ten days for five treatments.” Not so straight forward then. However, it was a chance – a chance for a further year and so not to be missed. “Of course, we will do it,” my husband said, and I knew he meant it. We would make a holiday of it, seeing a few things we had missed last time we went to Oxford and make it a winter holiday.
In our family I am the one who plans weekend breaks and holidays, so to hear Richard suggesting a winter holiday was another demonstration of his absolute determination to win me as much time as possible. The comment that a girlfriend of mine had made about him: “You’ve got a good one there,” was proved right one again!
After some juggling by the consultant and colleague, we ended up in the only other clinic which offered the same treatment at very short notice, which was situated on Cromwell Road in South Kensington. Again, we accepted unhesitatingly and made plans at very short notice (the best day) to go down for a mapping session. Knowing this was not just any MRI but one on whose results my future wellbeing lay, I was very nervous going down and more so, while waiting for the results.
They were very promising and so we made our way down hastily, poorly packed but received well by the Holiday Inn Kensington who had a favourable room rate with the clinic. Two treatments on the first week, three on the next, loads of rests and treats in between times, and even an impromptu invitation for a Friday night meal, made the treatments bearable. We even managed tea and scones, (a £40 a head afternoon tea, my favourite meal, seemed ridiculously over the top after every treatment.)
The surroundings were impeccable, the treatment so courteous I wondered if they had got me confused with someone else.
The treatment lasted an hour. I had to be mapped, for the day and then lie stock still on the bed holding my breath for thirty second bursts whilst the equipment guided a marker shaped like my tumour to fit inside its outline which was shown on a screen above my head. Repeating this 28 times over 30 minutes at intervals of a minute wasn’t easy, even when I knew my further health depended on it. However it was doable and, I hoped, worth it, though it had its side effects and on one occasion I was sick all over the table of a lovely vegetarian restaurant later one evening where a kindly young waitress looked after me.
Waiting very nervously for my first treatment we met a very relieved, plump man who had finished his final treatment for prostate cancer. He did his best to reassure me that the treatment was proving beneficial but giving me rather too much information!
We managed to see a show before the treatment, and Wicked the film as well as The Design Museum, Kensington Palace (good scones), and a few expat Mancunian friends too, so, when we finally returned to Manchester for a lot more rest, scans and consultations, we actually felt as though we had managed to have a reasonable, if somewhat unusual winter break.
