Beating bowel cancer together

Daniel Jeffreys, Chelmsford

Caroline and I found each other at university in October 1996 and have been together ever since. We got married in October 2007. On 31st March 2009 our first child, our beautiful daughter, was born. Our son, who was born on 3rd July 2011, followed not long after. In September 2016 we added a Labradoodle puppy to our ranks. We were the archetypal modern middle-class family. Money was never really an issue as both Caroline and I had well earning jobs in London. Life was good. It had its complications and challenges as everyone’s does, but looking back now they were trivial at best and by no means insurmountable at worst.

The world was still very much ours for the taking. Fast forward to April fool’s day 2019 and Caroline passed away early morning, primarily due to the disintegration of her liver caused by metastatic bowel cancer. She was just 41 years old. Everything had changed.

I’m not sure exactly when Caroline’s back pain really started to become an issue, but around the summer of 2017 it began to become more than just the odd uncomfortable spasm. Caroline saw chiropractors. She saw massage therapists and physiotherapists. She saw natural healers. All pointed to a slipped disk in her lower back as the source of the pain. She has posture assessments at work and used heat / cold patches to manage the pain. Back pain ran in the family, so it was a relatively easy conclusion to make.

She also suffered from constipation. We saw the specialist at the local private hospital and were prescribed laxatives. Again this condition was not unheard of for Caroline, so we brushed it off as one of those things.

At the time neither of us had any clue with regard to the severity of what was actually happening in Caroline’s body and we certainly weren’t on the look out for bowel cancer symptoms. It’s entirely conceivable, given the high rate a survival from bowel cancer if it’s caught early, that if we were on the look out she would still be here today.

Caroline had a cortisone injection into the ‘slipped disk’ in early 2018. When the pain failed to subside, the chiropractor recommended that we look elsewhere for answers as he didn’t feel another injection would work and we were merely masking the pain rather than curing it. It was at that point a colonoscopy was suggested as a logical next step.

I’m not sure exactly when Caroline’s back pain really started to become an issue, but around the summer of 2017 it began to become more than just the odd uncomfortable spasm.

Caroline had the colonoscopy in early April 2018 and we waited until the end of that month to get the results. This was the first time that I actually paid significant attention to the symptoms and I had a cursory glance through Google to find the reasons why someone may have a colonoscopy.

There wasn’t too much concern though as Caroline was otherwise fit and healthy and cancer was far from my mind at this stage. The day of the results I was working from home and just about to head off to pick the kids up from school when Caroline called me. She said she had spoken to the nurse at the hospital and had been advised to not come in to get the results alone. For the first time in this process, a genuine fear entered my consciousness. Caroline was understandably nervous, but it was my job to be strong and encourage her thoughts to be on the positive side. Worst case they would have found some polyps that need to be removed. This was to be a warning rather than a sentence. Wasn’t it lucky we’d caught it early; imagine if we had left it too late…

Waiting to go into the room with the Gastroenterologist was an uneasy experience. This feeling of ‘scanxiety’, which impacts and depresses most, if not all, of all those who suffer at the hands of cancer (both the afflicted and the support network), was to become common place over the next 11 months. We finally entered the room with the Gastroenterologist and a nurse who I now know was in there for support.

I subsequently became very nervous when I saw a nurse in a meeting with the Oncologist as it made me fear the worst. We were told they had found a tumour in Caroline’s colon (bowel). We were told the cancer had spread to the liver. We were told that we needed to have another scan to see if it had spread to the lungs. I questioned, in my absolute naivety, if we had caught this early. The answer was an emphatic ‘no’.

Caroline was in fits of tears and was being comforted by the nurse. I cannot in any way imagine what was going through her mind. I focussed on the practicalities (as became my way through this ordeal) as to what came next. What was in our favour I asked? Caroline was young, fit and strong with no other medical ailments was the response. Is that it? Crap. Caroline had the chest (lung) scan and we left the hospital.

We sat in the car for 10 minutes or so trying to calm down, trying to find some crumb of perspective, trying to comprehend what had just transpired. Caroline cried intensely and made sounds I had never heard from her before. I was to hear them again before this story was over.

We called Caroline’s parents from the car before we set off for home and told them the news. We went to our friends who were looking after our children and told them the news. We were definitely in shock. That evening, after a period of unsettling Googling on bowel cancer with metastasis (a word it took me a good few weeks to say correctly) to the liver and lungs, I sat in our en-suite toilet and cried. I hadn’t cried in a long, long time and I’m not an overly emotional chap, but I felt the need to release something from me. I wasn’t sure what it was – grief, anger, frustration, surprise, etc. Neither of us slept well that night, but the Googling stopped as it certainly wasn’t giving us anything other that apocalyptic scenarios. This was not good news.

I questioned, in my absolute naivety, if we had caught this early. The answer was an emphatic ‘no’.

The news of Caroline’s cancer arrived on a Friday, so we had the weekend to ponder our fate. It leaves you with the strangest hollow feeling. You are numb to the rest of the world. You are petrified for your kids (how will they react, what impact will this have on them, etc). I have rarely, if ever, felt so helpless and at the mercy of others in my adult life. Our life, our future, was anything but certain. A biopsy swiftly followed the following week to determine if this was indeed cancer, but there really wasn’t any doubt. The lung scan came back and it was clear. Good news. There was debate as to whether the primary tumour in Caroline’s bowel should be removed. We saw the surgeon assigned to us and it was at this point I realised the difference between surgeons and the rest of the medical community.

All the surgeons we dealt with were very black and white; there was not a lot of sugar coating in the conversations we had with them. Our surgeon opened with the line “I cannot cure you”. Now that may well have been true, but not exactly the choice of words Caroline and I wanted to hear. His point was that by removing the primary would not cure Caroline due to the cancer in the liver, but he could have delivered that message in a less fatal way. A friend of mine, also a doctor, explained that surgeons work in small rooms focussed in the exacting details – they don’t do soft skills. Now whilst I recognise this isn’t true of all, it is certainly true of my experience.

I then took on the onerous task of spreading the news amongst friends and family. I called my mum, dad, sister and brother and then branched out to friends. I can’t really give any advice here as to the best way to hand out the news that Caroline had a life threatening disease, especially the big ‘C’. I tried to remain as calm and as factual as possible, but that still didn’t stop the more emotional family members and a few of the friends bursting into tears at the news. You need to be prepared that some people will not take the news well – I thought that part went as well as it could.

Neither Caroline nor I are big on social media and we didn’t use that as a communication vessel. Judging by the overwhelming responses I received after I announced Caroline's death via Facebook, that was a good move.

Telling the kids was very difficult, but it was an important step. We told them that Mummy had cancer, but she was not going to die and we were going to fight. It wasn’t anyone’s fault, Daddy didn’t have cancer and that he’d be there to look after them if Mummy’s treatment made her feel unwell. That had nothing to worry about. They took the news as I guess most 9 and 6 year olds would in the fact that they were obviously concerned about Mummy but comforted that we said Mummy wouldn’t die. After all, as we explained, only people much older than Mummy died of cancer. In hindsight we should have left that particular comfort out.

Our surgeon opened with the line “I cannot cure you."

By the middle of May 2018 Caroline’s primary tumour had been removed and she was recovering in hospital. It felt like we had made significant progress and things weren’t as bad as they were at the initial diagnosis. After all, there was no cancer anywhere other than the liver and the ‘tumour debt’ in Caroline’s body had been reduced.

However, as was often the case, we were soon brought crashing back down. Caroline called me from her hospital bed out side of visiting hours and asked if I could come in to see her. I promptly made my way into hospital where I found the curtain around Caroline closed (another sign of impending doom, much like a nurses presence during scan time). She had been visited by one of the bowel cancer nurses and told that her condition was ‘terminal’.

Maybe up until this point neither of us had been paying the requisite amount of attention, or maybe we had simply blocking this finality from our conscious thought, but hearing that this illness WILL kill you and there is no hope for a cure is devastating.

We were on the ‘palliative’ road with no exits in sight. I found the nurse and questioned the reasoning, pushing her for a crumb of light. Eventually she conceded that there was a slight chance of a complete return to health that I took back to Caroline as proof not to give up.

The Oncologist then backed up the Colonic nurse's assessment – if we were to survive this we would need to (and I quote) “win the lottery”. Again Caroline was devastated and was incredibly upset. Looking back we were given the death sentence here and not 10 months down the road, but I just didn’t recognise it at the time. I believed that we were strong; we’d beat the odds. The writing was very much on the wall however; I just didn’t want to see it and I certainly didn’t want Caroline to believe it.

Once Caroline had sufficiently recovered from the operation to remove the primary, the focus switched to the ‘palliative treatment’. Our medical insurance through Caroline’s work had washed their hands of us by this point, so we were within the NHS system for conventional cancer treatments. It’s worth checking your medical insurance (if you have it) as to whether they will cover you throughout your treatment or if they pass you over to the NHS once the initial diagnosis has been made. Caroline’s insurance didn’t cover us for chemotherapy or anything else for that matter related to Caroline’s cancer.

We started chemotherapy at the specialised cancer treatment unit at the local hospital. Caroline had 6 rounds of FOLFIRI (Folinic acid, Fluorouracil and Irinotecan) – the standard initial chemotherapy drugs for bowel cancer in the UK. The experience was pleasant enough and the staff were friendly, but Caroline was clearly one of the youngest people in there which brought home the sense of injustice and the whole process can take a long time.

Caroline had a portacath fitted when the primary tumour was removed that enabled the chemotherapy drugs to be relatively easily administered. It’s not the prettiest of devices and it caused issues with seat belts, etc, but it enabled the nurses to quickly and efficiently tend to Caroline.

The writing was very much on the wall; I just didn’t want to see it and I certainly didn’t want Caroline to believe it.

Caroline found the highs and lows of this chemotherapy were more intense than in subsequent rounds. This may be due to her body getting used to it or a direct result of the specific drugs them selves, I guess we’ll never know. During the highs she felt ‘as normal’ and was able to operate just like any other non-cancer bearing individual. On the downs she felt like she had flu, was unable to move off the sofa or bed and just generally ‘felt dreadful’.
The joy of having the bottle that she came home with removed by nurses at the chemo centre (that administered the chemo drug for approximately two days via the intravenous Portacath at home) was palpable. The week off between treatments was a time to recuperate and wait in dread for the closing of that week and the inevitable return to treatment. Chemotherapy takes no prisoners.

Whilst we started the chemotherapy treatment we were also exploring other avenues. We secured a reliable source for cannabis oil that Caroline would add to capsules and take before bed each evening. It’s highly debateable as to whether the cannabis had any positive impact on the cancer, but it helped Caroline sleep at night and that alone meant it was worth its weight.

We also came across a process for natural, homeopathic healing through strict diet control and ‘Cosmodic’ healing. Cosmodic uses electronic bio-feed back to give back to the brain information that has been lost, damaged or has been compromised. It is used for recovery and rehabilitation of the body and is not primarily concerned with fixing conditions but more with finding causes and impairments and correcting them. The device that’s used is effectively a glorified TENS machine as far as I can tell. It's fair to say that although I was never a true believer with the treatments and philosophies Caroline took on-board as part of this treatment option, I was not a full sceptic either. There are many things in this world that I do not understand and I would never (hopefully) be arrogant enough to dismiss anything simply because they don't fit into the common practice.

The hope this process gave Caroline was powerful and she was inspired to heal by the practitioners. Their positivity kept Caroline believing and this alone was desperately important and it was largely maintained until the very end.

We also looked at a number of different ‘bleeding edge’ treatments such as radiology (including ‘CyberKnife’), chemo baths, immunotherapy, oxygen theraphy, etc. Most of the surgical treatments were not suitable for Caroline due to the severity of her condition, but they are worth investigating if the disease it not yet widespread (i.e. more than one or two tumours in the infected area).

Having never really used the NHS for the first 40 years of my life, I have come into contact with a decent chunk of it over the past year. One reality generally always rings true in my experience; the hospital workers are, for the most part, caring, hard working and resolute. They try their best in difficult and restricted circumstances.

They do however make mistakes. One such mistake took place whilst we had completed the first cycle of chemotherapy and were awaiting the results – the so-called ‘scanxiety’ period. We had been away for the weekend, mentally preparing ourselves for our first set if results post the initial chemotherapy period. We had an appointment booked for the upcoming Tuesday with the Oncologist to discuss the results but when we returned from our break on the Sunday, we found Caroline’s scan results sitting in an envelope waiting for us.
It transpires that 3 months previously I had asked for access to Caroline’s medical records (so that we could pass them on if we felt the need for a second opinion, etc) and it had taken the NHS department in charge of that area that long to get them together. It just so happens that the time period matched up with the release of Caroline scan results, so we got them delivered to us as well.

The hospital workers are, for the most part, caring, hard working and resolute. They try their best in difficult and restricted circumstances.

Fortunately it wasn’t all bad news as the scan report showed that the tumour markers in Caroline’s blood had decreased and some of the tumours had shrunk (albeit by not that much). Sadly it also commented that some of the tumours had grown, so we had had what is called in the game ‘a mixed response’. This was explained to us when we did eventually get to discuss this with our Oncologist a few days later, but it did leave us with a few days of not really understanding what the scan results meant without the Oncologist's interpretation and subsequent explanation.

It, if anything, increased the anxiety as we knew there was negative news on the horizon. I’d always advise you have an Oncologist talk you through the results as they have a way of describing them that helps you understand the impacts. Self-interpretation is a perilous occupation when it comes to life threatening illness.

After this first scan and chemotherapy treatment cycle Caroline decided to take a break from the treatment. Partly because she hated the side-affects of chemotherapy, (the chronic fatigue, the negative impact on her skin, loss of appetite, the general flu like symptoms) but also as she had decided to put her faith in the homeopathic route. It was offering a cure, whereas the chemotherapy was purely palliative. It was also a belief of the homeopathic healers that the chemotherapy was counteracting the benefits of the homeopathic regime, so that was another good reason to postpone any further hospital treatment.

We enjoyed the summer, including a fantastic trip to Tenerife with family and friends. Our spirits were high, we felt like we were winning, or at least capable of winning. The cancer though had other ideas. A month or so into our break Caroline started to notice a painful to press lump behind her belly button. Over the next few weeks this got worse and worse. A scan showed that the cancer had spread to her umbilical area. We were losing again.

The Oncologist advised that we re-start chemotherapy post haste, which we did. This time we had moved to a private hospital that provided an altogether more precise and relaxing experience. We moved to a private hospital as there we could access Avastin, which is not available on the NHS. Oxaliplatin and Fluorouracil supplemented the Avastin. We were lucky enough to be able to afford private treatment due to a critical illness insurance in place that paid out upon Caroline’s diagnosis. I strongly advise that if you can afford it, do it today. It was a Godsend for us, especially after Caroline’s private medical insurance washed their hands of us in the early stages.

The Avastin, Oxaliplatin and Fluorouracil regime took us through to Christmas and over the New Year. It delivered Caroline lows that were less severe than the previous chemotherapy but it took her longer to recover. Whereas last time Caroline felt she had a full week of feeling OK (relatively), this time around the flu like symptoms persisted for most of the two week period in which the chemotherapy was administered. It was a necessary evil though, as the cancer was spreading.

The subsequent scan showed yet another ‘mixed’ response, but this time the news had a more sinister tone to it. Once again we had seen some tumours reduce in size, but a few new dots had appeared meaning that the chemotherapy was not doing its job and the side effects now outweighed its usefulness. We were advised to head back into the NHS system and try the third line Chemotherapy treatment, the tablet form ‘Lonsurf’. Any quick Google search will tell you that Lonsurf is effectively pointless and it was even described by our Oncologist a ‘junk’. Quite how a drug that is only expected to provide an extra couple of months life (best case) is deemed a suitable cost for the NHS is beyond me. We decided against it, but kept it running in the background (the Oncologist requested it, but we were never intending to take it) as Caroline was also experiencing issues with her Kidney’s (small kidney stones – another potential by product of the chemotherapy) and general urological issues; if we had rejected the treatment outright then there was a significant chance that other departments in the NHS would not offer treatment on the other ailments.

We were staring at last chance saloon – not somewhere we believed we would be less than nine months since the original diagnosis. All that was left from a medical science point of view was clinical trials. We engaged a company called Oncologica to conduct a biopsy of Caroline's specific gene mutation to understand which trials would have the most chance of success. This cost us £2k and at the time it felt like the right way to go.

All that was left from a medical science point of view was clinical trials.

After a couple of weeks (whilst we were waiting for the Oncologist referral) they came back with a detailed report of the most appropriate trails for Caroline’s cancer – with most available at the Royal Marsden Hospital from a UK point of view.

Armed with a referral from our oncologist we arranged an appointment with the specialists at the Royal Marsden. In between the end of the chemotherapy and the appointment at the Marsden we took a trip to Dubai with close friends. Caroline at this point needed a wheelchair to get around. She was beginning to struggle physically and jaundice was beginning to be evident in her eyes and skin.

The administrative nightmare that involves getting a cancer patient abroad was heightened by the strict drug enforcement laws in the UAE, so it took several weeks of organising to ensure we could safely pass into the UAE with the Morphine prescription that Caroline was now dependent on. Travel insurance was another headache, as Caroline’s recent trip to the hospital for urological reasons meant the existing travel insurance was invalidated. I had to get a supplementary insurance policy to cover Caroline just in case the worst happened, which cost us the best part of £1k.
We had to wait a couple of weeks after our return from Dubai until we could get in front of the specialists at the Marsden. In that time Caroline’s jaundice was getting worse and she needed the wheelchair for any significant expeditions. Even getting up and down the stairs was difficult. The specialists at the Marsden informed us, after a day of tests and discussions, that the acceptable Bilirubin level (the liver makes Bilirubin water-soluble, but when it is not functioning properly the Bilirubin stays in the liver) was six times over the acceptable limit for clinical trials.

There was the potential that there was blockage further down the line and that might be causing the high Bilirubin levels, but that was quickly dismissed by the Oncologist based on the most recent scan. Our final option through medical science was now past us. Modern medicine could do no more. We were alone.

Caroline was also suffering from Ascites by now (significant fluid build up in the abdomen). We had a drain fitted in the local hospital but another was needed within 10 days. It was at this point we were told by a consultant that Caroline’s liver was essentially imploding and that in all likelihood she had 2-3 days to live, but possibly up to two weeks. The consultant completed a ‘Do Not Resuscitate’ (DNR) form and gave it to me with a few other documents that I paid little to no attention to.

We spoke to the Farleigh Hospice nurse about end of life care but we both just wanted to go home, so that’s what we did. It’s a very strange feeling when all hope is removed, as Caroline was still there, still talking, eating, drinking and living.

However we knew that the end was close, so we told Caroline’s parents and the two kids that Mummy was going to die soon and that it was just a matter of when. Nothing prepares you for how heart-wrenchingly difficult those conversations are, or how you yourself process the information. I hadn’t really cried throughout this process except for when Caroline was first diagnosed, but I cried now. There were short, sharp bouts of crying rather than long, elongated sobbing. It was enough at the time to keep me sane.

Caroline herself was unmoved by the news. The uncontrollable tears post diagnosis and after subsequent scan results were replaced by a calm, rational response. The consultant explained that the liver disease was causing confusion, memory loss and general cognitive meltdown. This, coupled with the liquid Morphine she was taking, meant that Caroline was aware of her situation but mentally relaxed and seemingly accepting of her fate.

She knew she was going to die and she was at peace with it. The previous months of torturous treatment and ill health were at least drawing to a close.

We then entered a short phase of end of life care. Caroline wasn’t against going into a hospice to see out her final moments, but she seemed to be OK so it wasn’t pushed. Over the next week (the week after we had been given the death sentence by the consultant) we managed a trip to the cinema and a trip to the pub for lunch.

Caroline was completely wheelchair bound by this point and very thin, except for the Ascites in her stomach. The jaundice didn’t really get much worse, but she wasn’t Caroline anymore. Her spirit had been broken. I asked the Farleigh nurses when we could expect the end and as is common in these scenario’s no-one could give me a definitive answer. It could be two weeks, it could be more. One thing was clear though was that when it did happen it would happen quickly and be instantly recognisable. We were playing the worst waiting game of all.

She knew she was going to die and she was at peace with it. The previous months of torturous treatment and ill health were at least drawing to a close.

Our daughter's 10th birthday arrived on 31st March 2019. Caroline was still with us in body, but her mind had long gone. She stayed in our master bedroom, in bed for the whole day, but was able to muster the strength to go through the happy birthday rituals and to talk about the day Eva and I had together before bedtime. I like to believe that Caroline, even if subconsciously, was waiting for that day to pass to ensure that the memory of her mother dying wouldn’t be on my daughter’s birthday. By 0600 the next morning, we had come to the end of our rainbow and Caroline passed away, peacefully, in our bed.

I won’t go into too much detail about Caroline’s actual death itself other than to say that it did happen quickly and I did recognise the signs. The paramedic, police (required as Caroline died at home) and the undertakers that took Caroline’s body away were professional, courteous and a general credit to themselves and their respective organisations. On one hand it was a relief, on the other it was terrifyingly soul destroying. Caroline had passed away less than a year after her diagnosis. The cancer had taken her body, but it could never take her pride, her gifts to this world, her soul.

Two months on and the 4 of us (I’m including my puppy!) are managing as well as can be expected. We are learning to live without Caroline and to manage the sadness, but it’s a long road ahead. We are also lucky that we have a strong network of family and friends willing to help us but the practicalities of life still make day-to-day living difficult at times. That said, we are living our lives and we remember Caroline with smiles on our faces, rather than pain in our hearts. That’s what she would have wanted after all.

If anyone reading this wants to talk about dealing with cancer or subsequent grief, I am here and ready to help where I can.

Instagram: daniel_jeffreys 

Twitter: danny_jeff

But we’re improving access to treatment and care for advanced bowel cancer

Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.

We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:

  • Increasing survival rates and improving holistic support for patients and their families
  • Reducing inequalities in access to potential life-saving liver surgery
  • Improving access to cancer drugs based on clinical need and not postcode
  • Providing better communications and support for people with palliative and end of life care needs

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