“She turned to the nurse and said, ‘either he’s a doctor or a very well-informed chap’. I assured her I was neither, just an ageing nerd.”
David Fullard shares both his own, and his daughter's experiences with pancreatic cancer.
2020 was a seminal time of my life, a life in which I had already experienced some momentous highs and some abysmal lows. Little did I know a huge ‘low’ was about to descend on me.
My darling wife of some 52 years and I were at our somewhat grandly described holiday home on the East Yorkshire Coast. It was September, a time when the onset of the colder, damper weather often caused my chronic bronchitis to flare up. That particular weekend I had been coughing quite a bit but was generally feeling fine albeit with the onset of some nasty sputum I had already begun my rescue antibiotics. With no rain forecast I decided one morning to take my bicycle out along the cliff tops, a route I had ridden many times. The ride was uneventful I parked my bike up in the shed and went into the caravan. I guess the sudden warmth of being inside irritated my respiratory system and I had a coughing fit. Halfway through it, blood filled my mouth, and I was soon spitting out tablespoonfuls of it for 5-10 minutes. It was Haemoptysis I guessed, (coughing blood) probably caused by my chest infection.
The Haemoptysis prevailed for several hours, and we decided to head home to seek medical assistance I ended up in A&E that evening. It was packed, Covid was rife, and I was shunted into a corner of a tiny treatment cubicle where several others sat or lay on the two beds. The place resembled a slightly grotty 3rd world hospital. After an hour or so my bloods were taken and after circa a further two hours, I went for an X-ray. I guess about two hours after that a Registrar saw me. Bloods were OK, X-ray NAD (nothing abnormal discovered). I asked the Registrar if my CRPs and white cell counts were within range. His expression told me he wasn’t happy with my question, and he asked me why I wanted to know, my response, that they were MY results and with a now full flow bronchitis attack and green sputum I was guessing an infection would have shown in my bloods, met with a smirk. Truth be told I was seeking assurance that it was indeed Haemoptysis and not something more sinister. Long story short I explained to the Registrar that I found his approach rude, terse and unhelpful and as an erstwhile NHS employee myself I wasn’t about to be treated with disdain. He asked me what my role had been in the NHS. I told him. He then suddenly decided perhaps a referral to an upper respiratory consultant was appropriate having been about to send me home on a wait and watch basis. That Registrar will never know my challenge of his poor bedside manner, his arrogance and the exchange that followed, particularly the referral to the consultant, probably saved my life.
Two days after my A&E visit, I was called at home by an upper respiratory consultant. I knew him both from when I worked in the NHS and from previous consultations re my bronchitis. He was extremely kind, he listened and concluded that while X-rays are very good, they are only circa 95% accurate in showing issues up and he felt a CT was needed if I agreed. I did! six days later I underwent a CT. Four days after that I was called and given a face-to-face appointment with him. Covid had curtailed any face-to-face appointments that could safely be undertaken by phone, so I had an inkling something wasn’t right. In the event my guesses at what it could be were as wildly inaccurate as they possibly could have been.
"In the event my guesses at what it could be were as wildly inaccurate as they possibly could have been."
That day sat in his tiny office is indelibly imprinted on my brain. After exchanging cordial greetings, we got down to business. My lungs were ok, I had a 4.5 mm node on the lower lobe of my right lung. Nothing to worry about he explained, the British Thoracic Society advised no treatment on such things under 8mm and anyway they were quite common in folk of my age. Big sigh of relief, I was about to thank him and leave when he said something else had shown up on the CT. He moved his PC screen so I could see it. There was a CT image of my chest and abdomen. ‘The CT has shown a lesion on your pancreas’ he explained. ‘If you look bottom right on the screen, you can see it’ ‘Lesion…that’s cancer’ I said almost in a whisper as a dreadful sense of foreboding and Deja vu came over me. Surely this cancer couldn’t now be affecting me a short while after our darling daughter’s death from it just four years previously.
The consultant looked at me and said he was aware of Diana’s tragic death from pancreatic cancer and how much of a shock this would be to me. He was as kind and calming as he could be, and he told me he had spoken to an oncology colleague. My cancer, being in the tail of the pancreas, was probably operable. He had arranged for my case to be discussed three days later at a Multi Team Discipline Meeting in the local Teaching Hospitals NHS Trust that Friday. He gave me the telephone numbers of his nurses who would contact me after that meeting; I mumbled my thanks and left. Driving home Veronika (my wife) rang (we have hands free) she berated me for not calling her with the outcome of the CT. I told her I would explain things when I reached home. Sitting in the garden room with her once home and trying to tell her I had the same freaking cancer that killed our darling girl and ripped out the hearts of our entire family wasn’t easy. She had lots of questions, for once I had no answers, some self-pity, some fear, some anger, but no answers.
The next few weeks were a roller coaster ride of good and bad news. I was referred to a consultant surgeon in The Teaching Hospital. My pre-appointment research on him, showed him to be a very experienced pancreatic cancer surgeon who had set up the service in The Teaching Hospital some years previously. I was given a speedy appointment and he told me my tumour was circa 31×28 mm in size and in the tail of the pancreas; it was approximately the size of a golf ball I concluded. He told me fortunately the tumour WAS operable; I would undergo a distal pancreatectomy and splenectomy. The tail of the pancreas would be removed along with my spleen because the tail of the pancreas nestles very close to the spleen. I would be immunosuppressed and need to take daily antibiotics for life afterwards.
Only about 10% of pancreatic cancers are operable and I knew from research when caring for Diana that survival times for non-operable pancreatic cancers were considerably lower than those suitable for surgery the former survival times being mostly gauged in months rather than years. I also knew my diagnosis was in effect a death sentence. That sounds harsh and scary, but death is inevitable for everyone, and the trick is to put off for as long as possible! Dealing with pancreatic cancer is no different. There is no cure for pancreatic cancer. This odious disease is almost always diagnosed too late for surgery, many if not all pancreatic cancers are discovered in A&E, chemotherapy/radiotherapy alone buys a bit of extra time for some but many folk die within 3-6 months. 5-year survival rates are between 4 and 25% with most of those being patients who are operated on. 10-year survival rates are under 4%. There is little data beyond that. There has been no improvement in pancreatic cancer outcomes in the UK for 40 years. The key to fighting this disease is early diagnosis. I cannot stress enough how important that is!
"The tail of the pancreas would be removed along with my spleen because the tail of the pancreas nestles very close to the spleen."
But my cancer was at least operable and was at stage 2 i.e., at a fairly early stage. My daughter Diana’s tumour had been larger, situated in the head of the pancreas close to her duodenum and stage 4 i.e., inoperable.
I was to undergo a PET scan in preparation for my surgery. This scan is taken after a dye is injected and the cancerous area shows up in purple on the screen. By the time my PET scan was completed, a further two weeks had passed and the whole of the local area where I was to receive my surgery was a Covid hotspot. Local news reports were full of reports of wards at the hospital being recommissioned as Covid wards, with less and less elective surgery taking place. My PET scan confirmed the CT results, and now it was a case of waiting for a ‘to come in date’ (TCI) for my surgery. I had my pre-admission Covid test and awaited my surgery date. It arrived a few days later, surgery was scheduled for 10 days hence. Then the bombshell, the hospital was flooded with Covid patients, elective surgery was cancelled. My surgeon rang to tell me the news although it had already been broadcast on both regional TV channels.
I knew pancreatic cancers are usually fast growing. I knew I had no time to waste so I began searching for a private surgeon. With Covid rampaging throughout the country it wasn’t an easy task, but I eventually found an eminent pancreatic specialist surgeon in London. He was prepared to take me on at a cost of £28,000. My research on him showed him to be quite excellent, highly experienced, and well regarded, £28,000 may sound a lot of money but, in the bigger scale of things money is of no use when you are dead! My close friend Brian immediately offered to drive me down and collect me afterwards. Brian is a retired GP and Medical Director; he is a first-class doctor….and friend!
Amidst arranging the London trip, I was sat contemplating at home, and I thought how unfair the whole situation was. Almost 30 years in the military, 16 years in the NHS never a day out of work, 25 plus years as a higher rate taxpayer and here I sat in my moment of need, and I couldn’t access the lifesaving operation I so badly needed. On a whim, I rang the Chief Executive of the Hospital Trust. He wasn’t available, but his secretary promised he would call me when free. He called whilst I was out but told my wife he would ring again. Given what he was already dealing with, I had my doubts he would call again. I was wrong, at 6:30 that evening he rang. He explained he had convened a meeting the day after tomorrow to discuss elective surgery with his senior team and someone would call me afterwards. My surgeon called straight after the meeting; we were back on in one week. Another Covid test and I was ready to go. I cancelled London and my good friend Brian and a week later was in hospital.
"£28,000 may sound a lot of money but, in the bigger scale of things money is of no use when you are dead!"
The ward I had been told to report to had no free beds. I was sent to another ward. That evening my supper consisted of an enema and breakfast next day ditto. Showered and gowned, checked over by the anaesthetist and consent to surgery signatures all given I lay and waited to be collected. My surgery was booked for 9 am. At 9:30 and still not collected; I knew it wasn’t happening. 10 minutes later my flushed and very apologetic surgeon arrived and explained he needed an ICU nurse for me for 48 hours post operation, and the two he had booked had been redeployed to Covid duties. I was just a tad peed off and said so. My surgeon said he was off to sort things, and he would get back to me. My operation was rescheduled for the next day. I forwent food for the whole day to escape the rigours of yet more enemas.
The next day I went to theatre. I was the only patient in theatre that day. I awoke post op in ICU to the sound of a nurse calling my name. I had tubes, catheters, cannulas, drains everywhere. My throat felt on fire, probably from the nasal gastro tube inserted, my tummy wasn’t painful at all despite the very large lateral incision, I had been given an epidural before surgery to help with the initial post op pain and it was certainly doing its job. I felt quite unwell I must confess but hugely relieved it was over. It wasn’t really, it was only the beginning; but I didn’t know that then.
48 hours in ICU with superb care and nursing saw me moved to a surgical ward. Three days later (far too long a wait) my surgeon visited me. The surgery had been a success, he was mightily impressed with my recovery and did I want to go home? All of the clinical info on my operation speaks of a 10-12 day post operative in patient stay. But the offer to go home and leave a hospital packed full of Covid patients was too good to miss. I went home with a tummy full of metal clips holding me together and a large drain in my side collecting blood and other ‘stuff’.
It was about the third week in November 2020 when I arrived home. My recovery was uneventful and a couple of weeks after discharge, I returned to the surgical ward to have the clips removed and my drain also. A week or so after that I was given an outpatient appointment with my surgeon to talk about the histology results of the tumour and lymph nodes sent for analysis. The date for that meeting was 6th January 2021. That was 6 weeks after my surgery, it seemed a long time to wait but the whole NHS was barely coping by this time and the wait for the histology results was the main cause of the delay.
January 6th arrived. My wife and I attended the hospital for my appointment. We were both relaxed, I was feeling great, both physically and mentally. I was expecting my surgeon to tell me how lucky I had been that all was well and to go home and enjoy life knowing I had escaped almost certain death. That didn’t quite happen. When my surgeon entered the room I was sat in, I noticed right away by his facial expression all was not right. My cancer turned out to be stage 3, he wouldn’t have operated had that been clear beforehand. The histology showed microscopic cancer cells 1mm from the edge of the piece of pancreas he cut out, a near miss, it could have been worse and shown cancer cells still in the remaining pancreas, but it still wasn’t good. My surgeon was strangely quiet, not terse but reserved, I guess the histology findings had surprised him. Like I said pancreatic cancers are fast growing. I’m sure the delay in my surgery had allowed the tumour to grow.
"I awoke post op in ICU to the sound of a nurse calling my name. I had tubes, catheters, cannulas, drains everywhere."
His specialist nurse was more upbeat. I needed mop up chemotherapy, and I was referred to the same oncology professor who had cared for my daughter Diana with her pancreatic cancer battle. He is a superb oncologist.
Then followed a series of blood tests, appointments with cancer nurse specialists and finally circa three weeks after seeing my surgeon I sat in the Oncology Centre waiting to see the professor. There were four rooms with different oncologists seeing patients. Two with Registrars and two with consultants. There was a nurse stood in the entrance with a list of which patients would see which of the four doctors. I was pretty savvy about all of this having been through it with Diana. I asked the nurse who I was annotated to see. It was the Registrar. I was NOT happy. She (unknowingly patronisingly) explained the Registrar would have been thoroughly briefed by the professor and my treatment plan agreed with him.
The NHS always sends out appointments to see Mr X or one of his team and I knew it is potluck whether you get the Registrar or the consultant. But my appointment said the professor and it was him I wanted to see! That wasn’t possible the nurse said, the professor was fully booked for that morning’s clinic, the Registrar was a really nice man she told me. I said it was the professor or no-one. I had questions (one in particular) only that professor could answer. I was added to his list and somehow saw him at my allotted appointment time. He remembered me and took a couple of minutes to bring my notes up on his screen before we began. He explained there had been a circumferential leak of microscopic cancer cells into my lymph nodes. 6 of the 27 lymph nodes sent for histology showed cancer cells present. I would need 6 months of chemotherapy, some luck and a very strong and positive approach to it all. He said he understood how difficult it was for me after we lost Diana to this cancer, but positivity was essential. Did I have any questions? I did.
I asked which chemotherapy regimen I was to undergo. There are 4/5 main types of chemotherapy used to treat pancreatic cancer. Folfirinox is the harshest, but for many pancreatic cancers, the most effective chemotherapy. It has many unpleasant and debilitating side effects. Not all patients get all of the side effects but very few escape them all. Diana had Folfirinox but was so badly affected by it the dosage had to be halved…. its curative properties are obviously diminished in doing so. Yes, I was to have Folfirinox. The chemotherapy even on half dose confined Diana to bed for 3 months. 3 months of raging diarrhoea, vomiting, loss of appetite, metallic taste to everything, neuropathy and, worst of all, two bouts of sepsis that required blue light admission to hospital. Diana’s time from diagnosis to death was 9 months. 8 months and 2 weeks of that time was spent having various chemotherapies and/or radiotherapy. None of it helped in the slightest, in fact in the latter stages it was hastening her death.
It was Diana’s decision to continue with the chemo, it gave her hope. In her case it also robbed her of any semblance of quality of life without the benefit of added quantity of life. I asked the professor to tell me honestly, if he were in my shoes, would he have the Folfirinox chemotherapy? He looked me square in the eyes and said he would. I told him, after watching Diana’s experience with chemotherapy I was only prepared to undergo it if there was a real chance of it helping me beat the cancer. He said I was physically and mentally strong and, although my situation was serious, I had a very real chance of at least gaining some extra quality life. I agreed to the treatment plan.
My first chemo session appointment soon came. One hour before hand a specialist nurse inserted a Peripherally Inserted Central Catheter (a PICC Line) into the underside of my upper arm. She made a small cut and guided a long catheter up my arm and across my chest so that it was sitting in a large central vein by my heart. She did so with great dexterity and no pain to me, there were no nerves inside the veins she explained. I watched as she used an ultrasound image of my veins to guide the catheter to its resting place. Incredibly adept and brilliant nursing skills. Next stop the Chemo Day Unit.
The Day Unit is staffed by incredibly kind and caring, highly professional nurses all with amazing senses of humour. My first session was a steep learning curve lasting nearly 6 hours. The nurses explained everything carefully standing beside me as I reposed in a comfortable reclining chair. My ‘bags’ of different chemo that made up the Folfirinox treatment were all marked with my name, NHS number and date of birth. Everything was double checked; a second nurse was called to check again before the bags were hung up and attached to my PICC line and we were ready to begin.
Well not quite, the cut made for my PICC line decided to spurt blood suddenly. The nurse calmly dealt with it, stemmed the blood flow and continued. 6 hours later the chemotherapy session was complete. My PICC line was then used to attach a plastic drink bottle sized ‘home chemo’ solution that would be housed in a ‘bum bag’ attached to my waist for the next 46 hours. After that time a community nurse would visit me at home, remove the chemo bottle, dispose of into a sealed Sharps Container for toxic waste and flush my PICC line through. That was the first of twelve planned cycles of my treatment.
I mentioned the side effects of Folfirinox. They are numerous and of varying intensity. Some folk seem not to be greatly affected by the chemotherapy others suffer terribly, many have the dose reduced, some have to change to a different regimen, some are not fit enough to have any chemo at all. I had made a pledge to myself that, no matter what, I would endure the full dose for the full 6 months. My reasoning was the more chemo I underwent the greater the curative effect. Time would show I wasn’t quite as strong as the clinicians, or I thought I was!
My first two chemo sessions were uneventful. I had some mild discomfort, a touch of tummy upset etc but nothing of any significance. Maybe I was one of the lucky few! I hadn’t reckoned on the cumulative effects of the chemotherapy. By session 5 I had settled into a pattern. The first 4 days of the fortnightly treatment were fine followed by 6-7 days of extreme discomfort. Rampant diarrhoea, terrible tummy pains, fainting sessions, vomiting. neuropathy and a weakness I had never before known in my 72 years. For most of those 6-7 days I took to my bed, curled in the foetal position living off water and pills. The next 3-4 days were much better and just as I was getting back on my feet the next session began. I had an array of pills to take to combat or mitigate the adverse effects of the chemotherapy on my system, these were supplemented by large amounts of anti-diarrhoea tablets, penicillin to protect me against infection as I had no immune system, blood thinners, anti-emetics to prevent sickness and paracetamol to ease the pain. I recall I took 22 tablets daily.
"I wanted, no I NEEDED that full treatment process to run its course."
Before I began my chemo treatment, I underwent another CT to give the oncologist a starting reference point regarding progress achieved via the treatment. A mid-session CT was undertaken after cycle 6, and I had an appointment with the professor to discuss the findings. He told me I was a bit of an enigma. My cancer markers were 20 when I started chemotherapy and were still 20 after 6 cycles. I asked if that was bad the number seemed high. The professor explained the normal range was under 30, he had patients with cancer markers in the very high hundreds! He told me both my pre-treatment CT AND my mid treatment CT showed no cancer present in my organs. I was even more determined to complete this treatment now! I might, just might, if not beat the foul cancer completely at least become one of the the ‘10 Year Survival Club’.
By session 6 I had lost over 3 stone in weight. I was as weak as a kitten but battling on. We then discovered by chance I was diabetic. Strangely enough no-one had mentioned diabetes to me up to that point. The district nurses who visited to remove my home chemo kit etc always checked my blood glucose levels but my chemo treatment included large amounts of glucose being administered via the PICC line, so my levels were understandably higher than normal. But not in the 32 range that a chance check made by myself one day using the glucose meter my granddaughter had for her diabetic cat! Up to this point no mention had been made of the pancreatectomy causing diabetes and although I knew the pancreas produced insulin, I stupidly thought I had enough of it left to see me through. It didn’t.
I was given oral diabetic medication but quickly moved onto insulin injections. Just another thing to deal with. I suffered from infrequent but alarming fainting episodes. I had quite pronounced postural hypotension, which meant if I rose from a sitting position quickly, I ended up doing a face dive to the floor. The faint itself was surreal and in an odd way quite pleasant. The consequences of them were less pleasant. Once I fainted by the bedroom door en route to the loo. When I came to my head was wedged between the door frame and the skirting board and I was stuck. Quite funny with hindsight. Another time I went backwards and smashed my head on the edge of the bed. The pool of blood my wife found me in made a mess of the expensive bedroom carpet. The falls downstairs were more frightening and more hurtful! Most of my falls were avoidable had I not pigheadedly insisted on refusing to call for help!
By session 8 I was sleeping probably 18-20 hours a day in the middle phase of each chemotherapy cycle. On the day session 9 arrived I was really comfortable in bed and decided to save time I would take both my maintenance dose of insulin and my Bolus dose together. I injected both into my tummy. I should not have done so. I suffered a severe hypoglycaemic episode as a result. I awoke with my PJs and bedsheet sodden through. My wife helped me into fresh bed wear and changed the sheet. Suddenly the room began to move, I couldn’t focus or speak, my limbs felt numb, and I felt so tired. Even then I guessed what was happening. I told my (by now very frightened wife) I was having a hypoglycaemic attack, except the words were coming out as unintelligible babble! Her pleas that she couldn’t understand me merely caused me to become irate and shout at her. I slumped back thinking maybe this was the end. The arrival of my granddaughter, alerted by my wife, saved the day.
Charlotte recognised what was happening straight off, an ambulance was summoned, and three paramedics brought me back to earth quickly with an IV glucose solution. I was very close to going into a coma. That would never happen again. By now it was too late to attend my chemo session, the cancer centre was 26 miles away and I was in no fit state to go anyway. I unashamedly rang the oncology day centre and pretended my transport had broken down and we couldn’t make it in time. The ever gracious and kind staff rearranged my session for two days later. The reason I was untruthful was the fact that before every chemo session bloods were analysed and general health checked, if anything pointed to the patient being unwell or not strong enough to take the chemo the treatment would be delayed or cancelled.
I wanted, no I NEEDED that full treatment process to run its course. During the second good phase of cycle 9 we decided to drive the 43 miles to our holiday home for a break. I was feeling fine, and we set off. Midway I felt the tell-tale signs of diarrhoea and I told Veronika I would have to pull into a loo. There was a shopping complex a couple of miles further on where I knew there would be lavatories. We arrived and I quickly parked. My tummy told me there was no time to lose. I raced into the store loo slammed the door shut pulled down my jeans and my bowels exploded.
The details are too graphic to tell but I stood in that lavatory surrounded by my own mess and sobbed like a child. Every single vestige of dignity had gone, I stood there alone, vulnerable, in great pain and crying silently, helpless to know what to do. Me, a man who had faced bullets and bombs, baying mobs and terrorists, standing there weak and alone in my misery. In that moment had I been offered a ticket to heaven; I would have taken it. The aftereffects of my ‘accident’ were such that I simply couldn’t clean up after myself. I washed my hands and left hurriedly before anyone else came in. I dread to think what the cleaning staff thought of the carnage I had left behind. Next to the deaths of our two children, that event was the single worst happening in my life. I could weep even now thinking about it.
I mention this because as I once sat waiting for my chemotherapy to start a man, also waiting, told me a similar story and how his own loss of dignity had so badly been affected. He had told no-one of his event and was clearly upset. I shared my story with him and by the end of it all we were both able to laugh about it. Shared experiences, good and bad, knowing you aren’t alone in your experiences is a great help.
As session 10 approached I was struggling badly, and it was beginning to show in my blood tests. Twice I had to repeat my pre chemo blood tests before the go ahead for treatment was given. Neuropathy was now a real bugbear. My hands looked as if they had been immersed in water for hours, wrinkly and barely any feeling in my fingertips. My feet felt as if I was walking on tin foil and really odd electrical impulses would shoot up and down my legs. And then, after session 11, just as I thought I would defy the odds and complete all 12 planned treatments, everything went awry. Two weeks of non-stop, uncontrollable, diarrhoea hit me leaving me barely able to function. I was told to ring the hospital if diarrhoea persisted after 4 days, I had never done so fearing it might interrupt my chemo. This time it was unavoidable, and I was admitted straight away into one of the oncology wards.
I was seen on admittance by one of the senior surgeons, a very nice lady who asked me to describe how my diarrhoea manifested itself. I explained it began with a cramping in my small bowel that became worse as it travelled up through the cecum along the transverse colon and down the descending colon. She turned to the nurse and said, ‘either he’s a doctor or a very well-informed chap’. I assured her I was neither, just an ageing nerd. I was sent for yet another CT.
The next day I was awoken by my oncology professor. He told me the CT showed no bowel infection or inflammation and the diarrhoea was entirely chemo induced. He said I would not undergo the 12th and final chemotherapy cycle. My protestations were cut short by him. The CT showed yet again there was no sign of disease in my organs, and he considered further chemotherapy at this stage to be irrelevant. I remember his parting words well. ‘You have far exceeded my expectations and you are disease free; you are a model of positivity and strength of character. I am discharging you from cancer services back to your surgeon, get over this diarrhoea and then go home and enjoy life’. It took another 4 days to stop the diarrhoea, but I was eventually allowed home. I went home elated and grateful.
Not everything was 100% though. My neuropathy had worsened, I was now so weak and unsteady from the diarrhoea and the chemo I needed walking sticks to get about. My first attempt at a walk outside saw me become dizzy and crash to the ground. I awoke to four worried neighbours and a passer-by crowded around me helping me up. People’s kindness is amazing, one chap ran to his home and appeared with a chair for me to sit on. Much to my embarrassment I sat there on the pavement, on a chair, being fussed on by total strangers. It took all of my temporarily limited speaking skills to dissuade them from calling an ambulance, but one lady insisted on walking me home.
I have so far failed to mention one other chemotherapy induced ailment that was visited upon me during all of this. Drop foot! My right foot would periodically not clear the ground fully and then trip me up sending me flying. It would also sort of flick out when walking causing me to look like an extra from River Dance. I told my family to start calling me Michael…as in Michael Flatley. Drop foot was yet another manifestation of the peripheral neuropathy that affected me caused either by the chemotherapy, the diabetes or a combination of both. It ceased as suddenly as it started after about 9 months.
Today, 2 years on, I have gained weight and I am physically strong again. I have learned to live with my Type 1 diabetes and my neuropathy and neither ailment define my life nor inhibit me, I don’t allow them to. I have 6 monthly surveillance CTs and the latest shows me still disease free. What will be will be, I know the cancer can return at any time but at present I am simply enjoying life and I am hugely grateful for the tireless care, support and love my dearest wife uncomplainingly gave me throughout the dark and dismal days of my treatment. My gratitude also extends to my next-door neighbour and friend who insisted on driving me to and from each fortnightly Chemo session as well as other hospital visits. I think he clocked up in excess of 1500 miles ferrying me about. A true friend.
So that’s my cancer story thus far. I am in no doubt that I have been incredibly lucky. Lucky for the following reasons.
- Haemoptysis caused me to attend A&E in the first place
- A rude Registrar referred me to a kind and caring upper respiratory consultant.
- The consultant referred me for a CT and a speedy referral on to a top surgeon who specialised in pancreatic cancer after the cancer was discovered
- I had the financial means to fund private surgery when the NHS seemed to be failing me.
- I had such a good friend in Dr Brian.
- I had the knowledge of the NHS and those working in local services to finally get my surgery.
- I had such a good oncologist.
- I had a good understanding of the disease before and after my diagnosis.
- I had the support of a great friend and neighbour who spent hours driving me back and forth to the oncology unit.
- But most of all I had the love and support of my family, mainly my two granddaughters and my wife. My wife was the proverbial angel of mercy who, from November 2020 to August 2021, was almost my full-time nurse and carer. She looked after me, she cooked special meals for me and hid her disappointment when I couldn’t eat them, she sorted my array of meds, took my BP daily set up my insulin injections, she picked me up after my fainting spells, changed my pjs and sheets in the middle of the night after fevers and put up with my anger outbursts. I simply couldn’t have coped without her, Finally, I think I am reasonably safe in saying had I not once worked in the NHS, had I not known who to contact when things were at a stalemate, had I not had the funds to pay privately, had I not been forceful and insistent at times with NHS staff during those fraught and demanding Covid days I would probably now be dead. Sadly, I am sure many other less fortunate folk have paid that terrible price. I feel no remorse in using my knowledge and contacts to save my life, I feel deep remorse that I couldn’t save our precious daughter!
"Do not be fobbed off by your GP if you have these signs demand a CT, not an ultrasound but a CT."
So, what lessons have I learned after my daughter and I both fought this cancer?
Firstly, this cancer is deadly and rarely shows signs until it is too late for surgery. GPs are commonly very poor in diagnosing it until later stages. Most pancreatic cancers are discovered by accident (as mine was) in A&E. No progress has been made in its treatment for 40 years! I repeat, early diagnosis is THE biggest lifesaver with this cancer. The early warning signs are well documented and can be googled. Do not be fobbed off by your GP if you have these signs demand a CT, not an ultrasound but a CT.
Secondly, chemotherapy seems to be prescribed almost as a matter of course to pancreatic cancer patients, there being no alternative treatment available other than radiotherapy. I met many patients suffering the side effects of chemotherapy with no discernible benefits, my daughter sadly being one of them. Inoperable pancreatic cancer often becomes a choice of quality of life versus quantity of life. The right balance is excruciatingly difficult to achieve. Chemotherapy CAN help, it helped save my life, but it doesn’t help everyone and sometimes a frank explanation that 6 months of a reasonable quality of life is better than 12 months of a painful and distressed life is needed.
Many pancreatic cancer patients I met had little to no understanding of the cancer, their prognosis or the choices open to them. Knowledge is power it gives a person at least some control over what happens to them, it elicits frank and factual answers, and it can save your life!
My daughter and I experienced the best and the worst of the NHS. She was let down and she died before she needed to. I was saved…for now at least. Despite my joy at life, I wish it was the other way round, I truly do!