Patient Story: 5+ survivor

Anthony Roberts- 5 Year Survivor

Anthony was diagnosed with pancreatic cancer in June 2016 after experiencing indigestion and heartburn and shares his story with us.

The first sign I had of anything wrong was in June 2016 when my wife and I were away for a few days. I felt as if I had bad indigestion and heartburn so my wife persuaded me to go to a pharmacy and I came away with a bottle of ‘Bisodol’. Needless to say, it didn’t help. The indigestion continued for a few days until we got home and then I also started itching all over. Every part of my body itched, from the top of my head to the soles of my feet.

After a few days, I made an appointment with my GP and he prescribed antihistamines. He also told me “it can’t be anything serious as you look too well”. I took the antihistamines as prescribed but the itching continued and got worse. Over the next week, I spent a small fortune on various anti-itching creams, to no avail so I made another appointment with my GP. This time I saw a different doctor and he prescribed some different antihistamines and recommended some different creams but again, they were of no use. The only thing I found that gave me some respite was a shower and that only lasted for around 20 minutes after which the itching would be as bad as ever. Unbeknown to me, I had become jaundiced during the week prior to seeing my GP(Dr Farouk) and without me knowing he made an urgent referral to the hospital (The Royal Gwent, Newport).

The next thing I knew I had a message on my answerphone asking me to contact the hospital booking office urgently. This rather startled my wife and me and when I rang the following day which was a Friday, an appointment had already been made for the following Tuesday. We spent the weekend trying not to worry and trying to guess what was wrong with me. I arrived at the hospital and was seen by the Consultant Registrar who thought I had gall stones blocking my bile duct. He also told me it was good news as I had no tumour markers in my blood. I was sent on my way, still itching and now sore from scratching but with no further appointments or a date for any procedure. However, I did have a feeling of relief as I thought it wasn’t anything serious. By now, I was quite yellow and my youngest son started calling me ‘Homer’!

During the following week, I started vomiting violently. The weight started to drop off me and my wife called the out of hours doctor twice over the weekend. Two different doctors came and both wanted to admit me to hospital. My wife tried her best to persuade me to go in but being the stubborn person that I am I wouldn’t listen. I struggled on until the Wednesday and after seeing my eldest son with tears in his eyes when he saw me, I realised how ill I was and agreed to go to A&E.

My wife took me in with a container of vomit only to be told by the triage nurse that I should have gone to my GP. However, I was kept in and I had an operation to place a stent in the bile duct. I was in for a week, I came home for a couple of days but I was still  vomiting and losing weight. I was admitted back into hospital where they discovered that I had an infection around the stent. One of the doctors wanted to replace the stent but the consultant said the stent was working as my bilirubin levels were going up and down. I was put on intravenous antibiotics and after another week the infection cleared up. I was starting to feel better and managing to keep some food down when the doctor that was doing the rounds that day, stopped at the bottom of my bed, picked up my chart, looked at it and said “You have cancer Mr Roberts” and before I could say anything she walked off. This completely floored me and I rang my wife who got to the hospital as quickly as she could to find what was going on. Obviously, we were both very upset and we asked for a doctor to come to see us for some explanation…

Neither of us can recall what we were told in that conversation but I was assigned a specialist cancer nurse. However, it wasn’t until the day I was discharged and my daughter demanding a meeting with the nurse that we were given a full explanation of the type of cancer that I had, which was Pancreatic and what would happen from then on. I was told that the cancer was at the head of the pancreas and was blocking the bile duct. I was also told that there was good news as it would be operable. I left with an appointment to see a consultant at Morriston Hospital Swansea a few days later.

The day of the appointment came and my wife and I travelled to Swansea with our eldest son and our daughter. We met with Mr Kambal who was one of the three surgeons involved in my care. He explained how serious my condition was but also stressed how lucky I was that I had been diagnosed early and because of that, it was operable. The operation I had was called a PPPD (Pylorus Preserving Pancreatoduodectomy) rather than the full Whipple procedure. I was told that as a PPPD isn’t quite as invasive as the Whipple, I should be in hospital for around 10 days.

I had the operation on 24th August 2016, all went well and I spent 2 days in ICU. I was then transferred to the main ward to begin my recovery. My first attempt to eat something was met with surprise from my surgeon Mr Shingler as it was a large Eccles cake! Needless to say, it didn’t go very well and it was soon deposited in a cardboard hat! I continued to vomit frequently for the next week or so and there was a concern as my bowels weren’t working. They decided to intervene with an enema and that did the trick!

I thought I was progressing well but was then set back with a chest infection. I was put on intravenous antibiotics which upset my stomach even more and the 10 days passed but I wasn’t well enough to be discharged. I recovered from the chest infection only to be set back again with a water infection. More antibiotics, another week in hospital, only to be struck down with a serious infection around the site of the operation. I was treated with strong antibiotics but it was a struggle to keep the infection under control and Mr Shingler wanted to drain the infection off. However, Mr Kambal didn’t agree and the decision was finally left up to the Head Radiologist as he was the one who would have done the procedure. He disagreed with Mr Shingler on the basis that the procedure was too risky, so I continued with the antibiotics and the infection finally started to recede. I was beginning to wonder if I would ever recover and by now I had been at Morriston for 4 weeks and I was starting to feel depressed. The doctors decided that I would be better off at home and that it was more likely to aid my recovery. They made arrangements with Community Nursing for them to visit me at home 3 times a day to continue the administration of antibiotics intravenously. They did this at very short notice and I was so very grateful to them.

Before I left Morriston, they decided to insert a PICC line for the antibiotics but true to form, it got infected after a few days and it had to be removed. I continued with the antibiotics through a cannula and after about 10 days the infection had cleared. That was a good day!

Whilst the operation was successful as they managed to remove all of the cancer. They removed a total of 14 lymph nodes but one was infected so I was given chemotherapy to make sure it was all gone. Around 2 weeks later I had my first visit to Velindre hospital. This visit was a group visit for an introduction to chemotherapy. We were given leaflets and a thermometer which became a very prominent item in my life. Over the next 6 months. Strangely I felt a great comfort in visiting Velindre as I knew I was in the best hands. At my second appointment, I met with my oncologist Dr Kein Yim. He was a lovely man, he put me at ease and explained exactly what was going to happen next.

My experience with chemotherapy was very eventful. First of all, I started with 2 different types of tablets daily and intravenous drugs once a week for 3 weeks and a week off. So that was day 1, day 8 and day 15. I attended various locations for this but mostly I went to the Tenovus mobile unit. They were a great bunch and we regularly had a good laugh. Although, things didn’t go to plan and I had to discontinue the tablets as I came out in a rash from my neck to my feet. I only ever managed to complete day 1 and day 15 of the cycle once or twice. The tablets were stopped and chemo was reduced from 100% to 60%. However I still had problems as every time I received day 1 of the chemo- my temperature would go up and I would have to go into hospital as a precaution against infection turning into sepsis. I would usually stay in between 2 and 4 days until my temperature came down.

I never had day 8 of the cycle because of this problem and this continued for the whole 6 months. I always received my chemo on a Friday and it became the same scenario every time. Sunday night around 10 pm, I would be sat watching TV and I would feel my temperature going up. My wife would take my temperature and would then ring Velindre to see if there was a bed available. It became a standing joke with the nurses and they would ask me when my next chemo was and say they would have my bed ready!

After the 6 months, my course of chemo was completed. I then had an appointment to go for a scan and blood tests before seeing Dr Yim. Everything was good and I have since continued with blood tests every 4 months at first then every 6 months and scans once a year.

It will be 5 years on 24th August 2021 since my operation and as long as everything is ok at my next appointment with Dr Yim in November I will be discharged. I can still have a scan once a year if I choose to and I most certainly will as obviously the earlier the diagnosis the better the outcome should anything reappear.

Throughout all of this, I had the love and support of my wonderful family and friends for which I am eternally grateful. Also the care and expertise of my GP Dr Farouk, my oncologist Dr Kein Yim and my surgeon Mr Guy Shingler. Without them, I wouldn’t be here to tell my story and I would never have met my two youngest of seven grandchildren. Also the doctors, nurses and other staff at the Royal Gwent Hospital, Morriston Hospital, Velindre Hospital and YYF Hospital and Mcmillan and Tenovus charities.

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