Pauline Worthington, Belfast
I was diagnosed with bowel cancer in December 2019 at the age of 41.
I had been attending the GP since December 2018 with stomach and bowel issues, which they put down to acid reflux and haemorrhoids, they treated this with Omeprazole. These issues continued and in February 2019 I returned to my GP with the same issues, this time I was passing blood in my stool, not loads just enough to know it was there.
This time they ran some blood tests and stool samples were taken. I was put on a triple course of antibiotics to treat helicobacter pylori which they were querying. I rang to get the results of the blood and stool samples and all were normal no cause for concern. However, by June 2019 I was still passing blood in my stool and experiencing all of the same issues.
As I was growing increasingly concerned I went to my GP for a third time, on this occasion I explained that I had private medical insurance and requested a referral for a bowel surgeon to take a look. I was told that this was a waste of time and that I had irritable bowel syndrome (IBS) and as all my blood and stool samples had come back normal I had no reason to worry.
Then in October 2019, still with the same issues, only this time it was more visible, I made a fourth appointment with my GP, this time demanding that they write me a referral letter. I was advised that this would be ready for collection the following day, although they did not see that this was necessary but if it gave me piece of mind they would process the referral. I rang the Ulster Independent Clinic that night and I had an appointment for the following week with a bowel specialist.
I attended the appointment, along with my husband Brian. The doctor carried out an internal examination and confirmed that I had no haemorrhoids, which the GP explained was causing the blood in my stools. He also confirmed that during the examination he could not see any active bleeding so I would need further tests carried out and immediately booked me for a colonoscopy the following Thursday.
While this was being carried out the specialist found polyps in my bowel, he removed a couple during the procedure but there was a large one which he wasn’t happy with. He advised I would need a CT scan. I remember asking him if this was cancer and he told me he didn’t know and that he would arrange for an urgent CT scan. I had the scan a few days later and on leaving the clinic I met my specialist in passing. He stopped me and asked if I could come to his clinic the following evening and that he would discuss all the results and findings.
The following evening Brian and I were sitting in the consultation room with the specialist, who explained that he had removed a couple of polyps from my bowel but there was a large one and a further two that he couldn’t access but that also needed to be removed. I again asked him if it was cancer and he advised that the biopsy he took from the large polyp came back negative for cancer but that he was only able to get a small sample and was still unhappy and would therefore need to be surgically removed.
As it was already 11 December he asked if I would be happy for the procedure to be arranged around the Christmas period, I asked if I would be home in time for the 25 December which he confirmed, on this basis I was happy to proceed and was booked for surgery in the Belfast City Hospital for Monday 16 December. I attended hospital on Friday 13 December for my pre op bloods and to receive the medication I had to take before the operation.
We had literally just left the hospital and were on our way home only to receive a phone call to say that my operation was cancelled due to the nursing strike which was taking place that week, and therefore put back until 30 December.
On the morning of the surgery I left the house at 6.30am after kissing my children Rachel and Adam who were fast asleep. Brian and I arrived at the hospital at 7am and were taken to the admission ward where all my details and forms were filled in and signed at 8am. I kissed Brian goodbye he walked with me as far as he could and I was wheeled on into theatre where I was met with the surgical team, who made me feel comfortable.
The surgeon arrived and explained everything that he would be doing. I asked him if he would ring Brian when it was all over, he said he would, and I knew I was in good hands. My bowel surgeon was amazing he took my concern seriously, he didn’t treat me as if I was being silly and he told me everything straight, no messing around, and I completely trusted him. I remember waking up and was told that all went well and that my surgeon would be round to see me. I asked if someone had contacted Brian, the nurse rang him and allowed me to speak with him, it was so good to hear his voice.
That evening the surgeon came to see me and told me that he got everything out, he was really pleased with the whole operation and that I was on antibiotics due to a nip in my bowel but overall everything went well. He advised me that he had contacted Brian and told him the same and he would see me the following day. I recovered really well from the operation and was discharged from hospital on Thursday 2 January.
Two weeks later, Wednesday 15 January 2020, Brian and I were back in the clinic meeting with the surgeon to find out the pathology findings of the polyps. We were informed that it was bowel cancer. The surgeon banged his hand on the desk and stated “thank God you came in when you did”, he advised that due to my age, and out of the 42 lymph nodes he removed, cancer was detected in two and that I would need six months of chemotherapy.
He explained that this would commence six weeks after surgery and that he had already processed my referral to an oncologist, who would be in touch with an appointment to discuss treatment etc. That appointment came a few days later and Brian and I were back again in another doctor’s consultation room but this time we were discussing treatment and side effects and if I would lose my hair etc. At this stage it all got a bit too much and I broke down, but the both of us made it through the appointment. An MRI scan had been booked as they wanted to check a spot which had been found on my liver, which was news to both of us!
On 30 January I received a phone call from the surgeon’s secretary to say that he would like to meet with me to discuss the results of my recent MRI and would I be able to meet him that day at 3.30pm. Brian and I were sitting in the room when the rug was pulled from under me. The MRI had shown three spots on my liver, the cancer had spread! I thought I was going to be sick, I couldn’t believe it. Why did I not listen to myself earlier in the year, why did I not demand to be referred earlier? Everything was going through my head.
I asked if this was terminal, he said no we are not there. He said it was treatable and he would refer me on to a liver surgeon and that they would be in touch with me. I joked that I wasn’t coming back to see him, as when I did, he was always giving me bad news, he said he was sorry and that he couldn’t believe it himself. He give me a hug and I left completely numb.
Brian was brilliant never let me get down, always lifting my mood, he has been my rock through all of this. He was with me when I told our 19 year old daughter, Rachel, that they had found spots on my liver. It’s treatable but I will more than likely have another operation later in the year and hopefully shrink them further. One was 1.8mm another was 9mm and the third was 5mm so they were not very big at all.
Treatment started on 13 February 2020 and I have to say the Oxaliplatin, which I got in Bridgewater via IV, was rough, the side effects of which no one can prepare you for. The peripheral neuropathy numbness and tingling in your hands, face, legs and even your bum when you are sitting on the toilet, were awful. They advised that I would experience this for seventy-two hours but this went on for five days after the first cycle, ten days after the second and almost three weeks after my third. I was still experiencing the numbness and tingling by the time I was getting ready for my fourth round.
They decided that they would stop the Oxaliplatin for the fourth cycle, as my tumour markers were well down (we were in single figures now). After the fourth cycle I was due to have a CT scan, we would discuss after that what was next. To be honest I was both relieved and nervous about not having the fourth Oxaliplatin but was advised that the tablets were the back bone of the treatment and it was only for one cycle.
On 27 April 2020 I had my CT scan, which showed no recurrence in my bowel and showed shrinkage in my liver so the liver team decided to carry out the operation. I met with the surgeon who went through the operation in detail, he showed us the MRI scans, the CT scans and answered any questions we had. I had all my pre op bloods done that day and we left knowing that in four weeks I would have a date for surgery and I was one step closer to recovery.
My surgery was booked for 9 June 2020 and due to COVID restrictions I would not be allowed visitors while I was in hospital. Monday 8 June I left the house saying once again bye to Rachel and Adam, knowing this time that it would be at least five days before I would see them again. I was strong in the house, I didn’t cry, but once I got into the car the flood gates opened.
Brian was brilliant, he made me laugh about silly things. He stopped and got me a coffee on the way over to the hospital. It’s the small things that made it ok, the silly things that he thinks of to make it easier on me, but he is going through this as well it’s not just me, but he holds it all together for me and the kids.
We arrived at the hospital and I was a lot calmer. We went to ward, got admitted and met with the surgeons, who again went through everything and advised Brian that they would ring when it was over. Brian had to leave, I walked him out of the ward and kissed him goodbye. I told him I loved him and would speak to him tomorrow to let him know what time the operation was.
That night was long with no visitors to keep your mind active. I would be an over thinker, Brian always says that, but finally I went to sleep. I woke the next morning, spoke to Brian, Rachel and Adam, and watched TV until it was time.
I was taken to surgery at 1pm on 9 June 2020. After a few hold ups while waiting outside the theatre I was wheeled in and met the team. I woke up that night in ICU in a little pain but that was soon sorted and I had a good restful night. I woke up on the morning of 10 June and the nurse brought me my phone and I was able to speak with Brian. He told me that the consultant had phoned him the previous evening and explained that the surgery went very well.
She had removed everything with good margins, had scanned my liver and was pleased that all the cancer was removed. I was so relieved, it was like an enormous weight had been lifted and I could breathe again. It was gone. I could start to work on recovering from this operation and have my four remaining more rounds of treatment. I could finally see the light at the night of the tunnel.
Recovery was a little slower and harder from this operation, but I pushed myself when I could. I walked as much as possible and got up out of bed and did everything I was asked by the nurses. On Sunday 14 June I was discharged from hospital and home to recover. I was so happy to be home again, back with the people who mean the most to me and who would help me to recover.
Two weeks after the operation I received a call from the liver surgeon who advised me that all went really with the pathology findings, which came back with good margins, and that she was really happy with everything. She advised that she would forward everything to my bowel surgeon and my oncologist and they would be in touch with the next steps, but at this stage everything was looking really good and really positive. We, as a family, finally felt like we were through the worst of it.
The oncologist rang on 6 July and advised that due to the pathology results they were wanting to move on to the ‘Watch and Wait’ part of the treatment. I was a little sceptical of this as no scans had been taken since the 27 April, no bloods had been done since my last round of treatment, which was almost three months ago now, and we didn’t know what the tumour markers were.
I explained all this to the oncologist and he advised that he would bring me up to clinic and run bloods and discuss everything. Before the visit to the oncologist I had my sixth month review with my bowel surgeon, who was happy with everything. I had a little pain in my lower stomach but nothing that needed painkillers so he wasn’t overly concerned. He stated that it might be a possible hernia and we would look into it, he ran bloods that night. I voiced my concerns about stopping treatment, he advised that he would speak to the oncologist and let him know my concerns etc. He said he would be in touch if anything was wrong with the bloods and he would see me again in three months.
I left the clinic that night feeling happier knowing that he would fight my corner as he had done before. Two days later the appointment came through for me to see the oncologist that coming Monday 20 July. My sister Edwina took me over to the appointment. I told Brian to go on to work as it was just discussing treatment there was nothing wrong and I would be in and out. Little did I know!!!
It started with a discussion regarding the remaining four cycles of my initial treatment. He stated that in his opinion I didn’t need any further treatment that both surgeries were successful and that we would proceed to ‘Watch and Wait’.
He said that he would run some further bloods, at which point I advised that I had bloods taken the previous Wednesday, when I was with my bowel surgeon. The oncologist turned to his computer to see if the results of the blood work were available. As soon as I saw his face, I started to panic. I asked what was wrong, he looked at me and advised that my markers were up and were higher than they ever were!
He stated that I would need to have another scan, this time it would be a PET/CT scan but that he would also run the blood work again and would contact me with the results in a couple of days. My head was all over the place, the nurse couldn’t answer my questions, the Dr couldn’t either it was all a wait and see.
I was in bits with no one with me due to covid restrictions, my sister was called and asked to come in, she had been waiting in the car park, she couldn’t believe it; we were in total shock. I rang Brian, he was quiet with shock. It was the not knowing where it was, where it had moved to, how bad it was. All these things going through your head, I was a mess, I had come so far why was this happening.
I had my PET/CT scan, it was a waiting game now. You try and keep your mind active, you try and not think about it but it is impossible. You look for signs of where it might be, thinking “well it’s not in my liver as that was cleared”, you don’t feel sick, you feel fine, you hope it’s a mistake. Then the phone call comes on the Monday morning at 8.50am asking you to come over as your results are in, you know this isn’t good, they are fitting me in between appointments.
I ring Brian tell him and he comes home to get me. We drive over and as usual Brian is trying to keep the mood light, reassuring me constantly that we will be ok, we will get through this. We even thought that because there was no nurse in the room, it may just be ok, never thought it was a social distancing thing. Fast forward thirty minutes and the Dr is telling me the scan showed recurrence in my liver, seven weeks after surgery I need treatment again I can’t take it all in. He is trying to get a treatment date sorted and an MRI needs to be done to get sizes and amounts, he explains that the PET scan shows activity but MRI shows them in more detail.
I am numb, shocked and crying. I can’t believe there was something missed during the operation, all the results were good, what’s happening. I look at Brian and think, I have to put you through this all again. We were starting to think and make plans for the following year. Instead, we now need to make the trips to tell everyone the fight, is still being fought.
I’m currently on a new treatment plan. Please let this work, please let me have options.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
Improved clinical guidance and practice on bowel cancer in younger people
Improved identification of people with genetic conditions and access to surveillance screening
Improved information for younger people on bowel cancer symptoms