Bowel cancer,  Colon cancer,  Health

Benj’s story

‘Benjamin Anthony Millard, our son, Abigail and Stephanie’s brother, was a husband, stepdad, grandson, nephew, cousin and friend. We all loved him…we all love him.

Where do you start a loved one’s cancer story, when the story was so short and the outcome was so poor, but that was Benj’s journey with cancer.

So the start, as with every one, is the day Benj discovered he had cancer, and the end came less than eight months later when he lost his life to bowel cancer.

Pre-diagnosis

So rewind a little, pre-diagnosis, and meet Benj. He was 6’ 2”, he ate healthily and well, he went to the gym every day, sometimes twice a day, he did body building and was proud of the physique he built; he was physically very strong. He loved life, he loved travel and holidays and always supported a natural tan, he loved a good festival, he loved music, he loved sport, especially football and was a good player as well as an avid Man United fan, He loved rugby, and as his Grandmother is from New Zealand he was proud of his roots and supported the NZ All Blacks. He loved to party with his friends, and he loved to spend time with his family and loved ones. He loved fashion and was very individual in his style and dress, a trend setter, not a follower he liked to say. He loved food and was a brilliant cook. He was funny, had a wicked sense of humour, a belly roaring laugh, and was a prankster amongst his friends. He was loving, protective of his loved ones and had such a kind heart, but he also didn’t suffer fools gladly. I haven’t mentioned that he was incredibly handsome, not that he was aware of how attractive he was. He was 32 years old.

Symptoms

The symptoms that Benj displayed were not your typical bowel cancer symptoms. From December 2017 we noticed he complained of increased heart burn, often asking for indigestion relief after eating or after a meal. Christmas over indulgence? I’m his mum, I have a hiatus hernia, and have suffered with heart burn for many years, so my hope was that he wasn’t plagued with the same condition and I suggested on several occassions that he see his GP and get it checked out. Towards the end of February 2018 Benj experienced severe upper stomach pain and took himself to A&E, he was examined and it was suggested he had indigestion; Benj said the doctor laughed as he gave his diagnosis, and he felt embarrassed that he’d attended A&E. Benj was questioned about his lifestyle, and from his physique was asked about his diet for his bodybuilding. Benj ate a high protein diet to help his exercise and gym routine and it was suggested he ate less meat to ease his indigestion. He was prescribed omeprazole tablets to ease the discomfort he was experiencing and advised to see his GP. No other tests were carried out. Benj was so alarmed by the pain he experienced and became vegetarian overnight to try to help ease his symptoms.

Benj saw his GP early March and along with the heartburn he was feeling increasingly fatigued and said he felt ‘low’ in himself. It was noticable the change in Benj and we frequently said that his ‘Get up and Go, had Got Up and Gone!’ His GP gave him a prescription for continued Omeprazole and diagnosed him with depression, for which he prescribed antidepressants. Benj felt a stigma of having been diagnosed with depression and he became anxious that this was happening to him, he was feeling his life was becoming out of his control. At the end of April 2018 Benj turned 33.

By June, Benj was feeling more and more fatigued and was really struggling with how ‘low’ he felt. One Friday he flew to Spain with his wife, but by the next day he phoned to be picked up from Bristol airport, he had caught the next plane home as he felt too unwell and couldn’t stay there. We were worried about him and suggested he return to see his GP. Benj didn’t feel the antidepressants were helping him, infact he was feeling worse in himself and he didn’t want to take them anymore, he was also starting to be breathless.

It was July 2018 before Benj went back to see his GP, with by now extreme fatigue and breathlessness. His GP suggested changing his antidepressants and gave Benj a new prescription. As Benj went to leave the room he asked his GP if being depressed would cause him to feel like he was about to collapse if he walked up the stairs, or if he tried to lift a box of shopping out of the car for his wife, and his GP said that with severe depression, yes, he could have very physical symptoms. He agreed however for Benj to have a blood test to see if they could find a cause for his tiredness. That was Thursday 12th July 2018.

Early hours Friday 13th July Benj’s phone kept ringing, with a withheld number, which Benj initially ignored, but when he answered it it was the Royal United Hospital (RUH) in Bath asking him to get to the hospital immediately as he was so severely anaemic that he was at risk of heart failure. It was identified that the cause of his anaemia was blood loss related anaemia. Benj had no blood in his faeces so it was unsure at this point what was causing the bleeding, but the consultant said this had been happening for a long time for him to be as severely anaemic as he was, and that his ‘low’ feeling was that his system was physically supressed which would make him seem depressed. They were amazed he had been able to walk himself into the hospital his blood count was so low. He was given an iron transfusion and referred urgently for further investigative tests. He came home that day after the infusion.

It took several, agonising weeks for the ‘urgent, referal’ appointment to come through, and in that time Benj was rapidly becoming more unwell. His pallor had changed to pale, in all his life he was never pale skinned, he naturally had olive coloured skin. He also had swelling in his testicles that needed to be aspirated, he had blood in his urine, and he was feeling very nauseaus for most of the time. His energy levels were very low and his appetite was reduced. He had more blood tests and his iron levels remained low, so he was booked for a second infusion. One of the blood tests was to test for cancer makers, but those results came back negative and we all breathed a sigh of relief that it wasn’t cancer. It was now five weeks since he was referred for a colonoscopy and we were all anxious to find out what was causing Benj to be so well.

Colonoscopy

Benj and his wife went to the hospital to have the colonoscopy only to find he had read the letter wrong and he had the wrong date! He had taken the preparations to be able to have the colonoscopy and was feeling very unwell, and he broke down in the hospital and pleaded to have the colonoscopy that day, the actual appointment was another two weeks away! The hospital were sympathetic, and while he had to wait hours to be able to have it done, they did do it that day, and August 22nd 2018 was the day we found out that Benj had cancer. Biopsies were taken and he had to wait for results. That was the day his life changed, and all our lives changed.

On a Monday morning, ten days later, Benj, his wife, his dad and I went to see the consultants to hear the results of his colonoscopy. It was a difficult meeting. Difficult because his results were inconclusive; his biopsies were not good samples and they were unable to confirm what type of cancer Benj had, although they believed it was bowel cancer. They suggested repeating the colonoscopy with a more senior person doing the colonoscopy. By now, at this appointment, Benj was very unwell. It was the first time he had been seen by a consultant and nurse specialist. He was pale, sweating profusely, and very nauseous. He was having trouble going to the toilet to pass stools and said he hadn’t been to the toilet for about ten days, although he was still passing wind. His consultant said that ‘wind’ was good. The next colonoscopy was scheduled for ten days time and Benj broke down again, saying he couldn’t wait another ten days to then wait another ten days for results, he needed to know what was going on. They told us that was the earliest they could carry out the procedure. We were all taken to the side room next to the consultation room where the four of us hugged each other and sobbed. Ten minutes later the door opened and his consultant came in and said after seeing Benj he had got on the phone and arranged another colonoscopy in two days, and a PET scan for the same week on the Friday. It was relief all round and we were elated that things were moving at last and he would finally receive the help and treatment he needed.

Diagnosis

A week later we all returned for the results of the colonoscopy. Benj had bowel cancer, no question, the results were clear. The PET scan also showed he had extensive cancer spread in his lymph nodes as far as his neck. However this caused confusion. This wasn’t typical cancer spread for bowel cancer, and while it was rare to happen, they felt that Benj could possibly have two cancers, Bowel cancer and Lymphoma cancer. They also told us that two cancers would be his best option. Two cancers meant they could operate and remove the bowel tumour, and then they could treat the Lymphoma. If it wasn’t Lymphoma, then he was already at a very advanced stage of cancer and his prognosis was poor. Unbelievably we left that meeting hoping he had two cancers! How crazy is that! But faced with the unthinkable we had to hang on to any hope of something positive, so two cancers was our hope at that point. They were already discussing palliative treatment, it was frightening.

 

Right hemicolectomy

A bowel resection was scheduled for 19th September. Benj had a 5cm tumour in his right side in his transverse colon, and needed an extended right hemicolectomy. He was so unwell the morning of his operaton and was green in colour and being sick every few minutes. His consultant was concerned, but agreed to go ahead with it. The operation was a success and the surgeon managed to perform the operation without the need for a stoma bag, which was one of the only real positives in all of Benj’s cancer journey, he really didn’t want a stoma.

 

His time in the recovery room after his operation was long and his wife and I had an agonising nine hour wait to see him after speaking to his surgeon as they tried to get on top of the pain he was experiencing. He was in agony and it transpires that the spinal epidural he had inserted to manage his pain for the first few days was not put in the right place and therefore was ineffective in managing his pain. It took several attempts to try to move it, but it was 36 hours and a change of anaethatist who inserted a new epidural that eased his pain. It felt cruel that he had to endure so much. During his stay in the hosital and once his pain was under control, they carried out a biopsy on Benj’s neck to gather cancer cells and identify his cancer.

Biopsy results

Ten days after his resection we were called to the RUH to get the results. Benj was feeling better than he had felt for several months. He went to Bath and had his hair cut, and dressed smartly ready for his appointment. I met him and his wife in the car park and although only ten days after his resection and a considerable walk to the consultation room for his appointment, he was determined to walk it, he even did the stairs rather than the lift once inside the hospital.

When he walked into the consultation room, Benj embraced his surgeon and thanked him for saving his life, he was grateful and appreciative of all he had done for him. In only a short time they had built a rapport and had a trusting relationship. I felt for his consultant/surgeon that day as he delivered the results of the the tumour biopsies and lymph nodes. Benj had bowel cancer, there was no second cancer, it was bowel cancer that had spread extensively. Benj asked for a time scale, and was told that the oncology team could discuss things more with him. Benj asked if he would get to Japan to see the Rugby World Cup in October 2019, his consultant told him to go and do all the things he wanted to, and to eat and drink whatever he wanted to eat. We cried, and when the consultation ended we were taken to the side room where Benj scooped his wife and his mum into his arms, he hugged us both tight, kissed the tops of our heads, and we cried. It was so hard walking out of the hospital that day, the world continued and people walked all around, cars and buses were moving in and out of spaces and the world moved at it’s usual pace, and yet I felt like the world had stopped. We said goodbye in the car park and drove our separate ways. It felt like we were all part of a nightmare, it felt unreal. Benj fell in to a deep depression after that meeting that lasted for many days. He stayed in bed, didn’t eat, and didn’t want to see or speak to any family or friends.

For his appointment to meet with the oncology team I went along too. They had identified that he had a BRAF mutation, and that because of this it was unlikely his cancer would be very responsive to chemotherapy, yet another blow. They discussed the chemo options with him, and he left to think about his options. Again he asked for a timescale in terms of his survival and was told he probably had until Christmas without treatment and up to a year with treatment. It was now October 2018.

After that consultation Benj initially declined chemo and spent a lot of time researching other options of treatment. He looked at alternative treatments in Mexico and other countries, he contacted a dietitian/nutritionist and had an assessment of his needs, he took supplements, made nutritious smoothies, removed sugar from his diet, bought cannibus oil, bought a massage chair, read articles about his type of cancer and came across research about the drug Avastin that could help to extend his life. He was prepared to try anything that could alter his destiny.

Chemotherapy and radiation

But ten weeks after his previous scan, a repeat scan showed extensive progression in his cancer. It was aggressive. It had spread to his liver, his lungs, his right kidney and his lower spine. He was in agony, especially with his spine, and his medication was increased to help him to deal with the symptoms. At this point he decided to try chemotherapy. He started the chemo in November 2018 and was put on Folfirinox every two weeks. Three powerful drugs, Oxyplatin, Irinotecan and Fluorouracil that they felt, due to his age and size, he could cope with. He was offered 6 cycles, then they would review his case. The treatment was long and harsh and the medicine administered over three days each time, he had very few good days between cycles. He made plans for his life, but frequently, due to his health he had to cancel, which both frustrated and upset him. His life felt out of control and he was desperately trying to take some control back and build memories with his family and friends. Up until the New Year Benj was not well for much of the time, but it was undoubtedly the best he was during his illness. From the beginning of the New Year he became unwell at frequent intervals. He was put on steroids to boost his system, which he hated, the steriods caused his body to swell up and altered his features and physique, which for a body builder and someone who was proud of his efforts to maintain a good physique he really struggled with.

After four cycles his scan mid January showed partial reduction to the tumours in his liver and lungs, but progression of the cancer in his spine. He was put forward for a trial and the initial cycles of chemo extended from 6 to 8. We had set up a Go Fund Me page to raise money to pay for Avastin treatment for when it could be added to his treatment plan if possible after the 8 cycles were completed, and called ourselves The Bowel Movement,’ the whole community around Benj gathered in support of his needs. Our aim was to raise funds for Benj as well as raise awareness of the symptoms of bowel cancer, we didn’t know them before Benj was diagnosed.

Benj had a single course of radiotherapy on his spine to try to shrink the tumours, and he temporarily had relief from this. At the end of February he travelled to Manchester to watch a Man Utd. game, but he was battling with a chest infection and ended up in the hospital in Manchester. His plan was to travel from there up to Lancaster to spend time with his sister, Abby and her husband to celebrate her achievement in completing her PhD but again this had to be cancelled and he felt safer and more at ease to head back to the RUH to the care of his cancer team. At the same time his youngest sister gave birth to his first niece, but he was too unwell to see her. He still received chemo, but his blood count was really low and he needed injections to try to raise his bloods. Cycle 7, but really taking it’s toll on his body.

And then he came home, but it was short lived and he returned to hospital mid March with a high temperature, a viral infection and he was dehydrated. IV drugs and fluids were administered and he started to pick up, but then he developed diarrhoea and vomiting and it was hard for the medical team to understand what was happening and he was put in to isolation. After two weeks and various scans, for fear the cancer has travelled to his brain, we found out he had C-Diff, a really nasty bowel infection, but it meant he could be treated with the right medication, and he returned home. He was weak, had very little appetite but he was thankful to be at home. His spine was very painful and he was issued with a back brace to help to support him when he walked or moved. Sunday 24th March we went to see him and his strength and tenacious approach to life made him want to do a short walk with his wife, me, his dad and the dogs. It was such a special day for us, but the walk took it’s toll on Benj and he was exhausted the next day. He attended a fundraiser brunch on March 30th, but needed his body brace and crutches to be able to walk and he was looking very unwell. He seemed aggitated and was very breathless.

Dorothy House Hospice

Monday 1st April 2019, and Benj’s final chemo session was planned, but he was very unwell when he arrived at the RUH. He was wheezing, he had a raised temperature, raised blood pressure and heart rate, he had swollen wrists and feet, his chest was tight and he had involutary movements. Doctors were concerned and he was put on IV antibiotics and fluids, and had scans. It transpired that his kidneys were failing and for four days the doctors tried everything they could to kick start them back to working. He had a kidney stoma fitted to drain the fluid and pus from around his left kidney that was causing the sepsis he had developed, and that helped to ease the pain he was in, along with the pain relief he was given. Sadly his kidneys didn’t recover and Benj was told there was no more treatment they could offer.

He was transferred to Dorothy House, our local hospice, on 5th April, they were truly wonderful in caring for him, and us as a family, and he died on 15th April 2019 surround by his family and loved ones, just two weeks before his birthday. We held his funeral and celebration of his life on 30th April on what would have been his 34th birthday.

I think what sticks with me most from throughout Benj’s illness is the feeling of helplessness alongside feelings of HOPE, we hoped every single day that things would be better and improve for Benj, we hoped that there would be some sort of miracle cure, we hoped that he would not be in pain; we hoped that his scan results would have positive news, we hoped that he would have some quality to his life and be able to live his life and make memories. I think up until his last breath I still hoped, but the hoped changed and I hoped he had the most comfortable and painfree of deaths, which, thanks to the amazing staff at Dorothy House, he did.

As his parents and family, we continue to hope for other families. We hope that through our campaign The Bowel Movement, that raises awareness through social media outlets, and through the incredible work of Bowel Cancer UK that we can help other people to recognise the symptoms and seek help at an earlier stage. We know that we can’t irradicate bowel cancer, but if GP’s can view patients individually and more holistically then maybe, just maybe we can save another person’s life.’

 

Abby, Steph & Benj

**I would like to extend my gratitude to Abby, Benj’s younger sister for letting me share Benj’s story and his mum, Josephine who wrote his story; it cannot have been an easy feat, as well as his dad, Anthony and Steph his youngest sister. Benj’s story highlights how important it is to be your own health advocate, Benj knew his body, as he was fit and healthy, he recognised that he was not well. Although Benj did not have typical bowel cancer symptoms, it was clear something was not right and he tried so hard to find some answers. The Bowel Movement which as you read, started to help raise funds for Benj’s treatment, has continued to campaign after Benj’s death – the charity’s mission is to raise awareness about bowel cancer symptoms, early screenings, educating others that you are never too young and how important it is to be your own health advocate. Bowel cancer can be treated effectively if it is caught early. Of course there are many factors with everyone’s diagnosis and you can still be successfully treated with later stages, it is however a longer road. The idea is not to compare but to be aware and any kind of awareness, even if it helps one person, is worthwhile.

It is heartbreaking that Benj, a wonderful young man was taken so young. Please support his family and the whole community to keep sharing Benj’s story, to keep talking about bowel cancer and its symptoms, to keep educating others about how, wherever possible, prevention is better than cure.  Love Jojo xoxo

 

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