Caroline Richards, 39 from Bridgend
I was diagnosed with stage four bowel cancer at 34 years old in 2014.
It was Christmas 2013 that I started to feel very tired all the time – I was 34, a new mum to my 15-month-old son. All new mums feel tired so I wasn’t concerned. However in the New Year, I felt a swelling in my tummy and found myself going to the toilet more frequently. I was concerned but thought it could just be IBS. I did think about booking an appointment with my GP, but I had just got a new job, so I pushed it to the back of my mind.
A few months later in March, the swelling was worse and I saw my GP. She was brilliant; she felt my tummy, took a blood test and referred me to a specialist. I mentioned I had private healthcare insurance and she suggested that it would be quicker if I went to see the specialist privately. She wrote a letter for them, which I collected a few days later. I read it and I was very surprised to read that she thought there was a mass surrounding my ovaries.
I had an ultrasound and an MRI on my ovary and they thought at this point it was an extremely large cyst. I was sent to a gynaecologist and they then referred me to a colorectal consultant as they felt my symptoms were more to do with the bowel. This consultant did a quick internal exam and found nothing untoward so referred me back to the gynaecologist. All this was done privately using my insurance so it was quite quick. At this last meeting with the gynaecologist, possible cancer was mentioned for the first time. I was then recommended to go back onto the NHS for treatment as it would be quicker with MDT meetings – although in hindsight this was bad advice.
I went to Swansea for an NHS hospital appointment for scans around my ovaries, they wanted to check the rest of my abdominal organs and did a CT scan of my bowel. This was the first time my bowel had been mentioned as before all we spoke about was my ovaries. They took my blood test and my CEA levels were very high – over a hundred.
At this point I was very ill, I couldn’t eat or drink. I couldn’t keep anything down. The swelling in my tummy was just pushing on everything and getting bigger and bigger.
I ended up being hospitalised. It’s much quicker to have scans when you’re in a ward. For the first time I had a colonoscopy followed by another CT scan. The surgeon who performed the colonoscopy put a hand on my shoulder and asked if anyone in my family had bowel cancer. I said no. I knew by the look on his face I had bowel cancer.
I was booked to have an operation immediately to remove the mass surrounding my ovaries and to remove the tumour in my bowel. I woke up from the surgery in a ward full of elderly people. That was a real low for me. I felt very alone. I was the youngest person in the ward by 40 years.
That was a real low for me. I felt very alone. I was the youngest person in the ward by 40 years.
I found out that the operation was not successful. They did remove one of my ovaries, but the tumour in my bowel was too big so they stitched me back up, not being able to remove anything.
I was referred to an oncologist for possible chemotherapy. They said I perhaps could have surgery in the future but it wasn’t definite. I was sent home. I felt in limbo. I didn’t have any information. I used Google a lot at this point but also found some wonderful friends from Bowel Cancer UK on twitter who helped me through these early days.
In May I was referred to an oncologist in Velindre Cancer Centre. She was brilliant. She explained everything to me. The cancer had spread to organs in my abdomen but she said that she was going to do everything she could to help me stay alive. I felt, for the first time, like someone was on my side and willing to help me, not just leave me to die. We were going to get through it together.
I asked her how long she thought I had to live. I wanted to know. My son was just under two years old at this point and I felt I needed to prepare him and my husband for what was ahead. She told me that statistics showed I probably had 18-24 months left to live. Life was very difficult. I questioned at this point if I should go ahead with the treatment. Would it be better to die now when my son didn't really know me, rather than in a few years’ time when we would have an even greater bond? This question comes back to me often in my darkest days.
We decided to go ahead with the chemo and I started it straight away. I didn’t feel too bad. I had a bit of tingling in my hands and feet, but nothing I couldn’t cope with. It was planned for me to have six sessions, but after about four my tummy was swelling again. I had a scan and got the results just after the sixth cycle. It revealed that there was a new tumour on the other ovary. The chemo wasn’t working and the decision was made to stop it.
This was a huge blow to us. The choice now was to try another chemo regime or to push for an operation. The operation was not going to be possible on the NHS as they were not convinced that it would extend my life any further. My oncologist believed that the operation was my best hope and she recommended a surgeon who would operate privately and we met with him. He was wonderful, and after many meetings he agreed to do the operation. It was a major risk but at this point I had nothing to lose. He removed the tumour in my bowel and I had a colostomy bag. He also took out my remaining ovary and removed all the cancer he could visibly see. It was a success; I was in remission.
It didn’t take me too long to adapt to the colostomy bag, I was very well prepared for that. However, what I didn’t expect to go through is clinical menopause as I had lost both my ovaries. It was fine, I understood I would never have more children but I wasn't prepared for the night sweats and all the other symptoms that menopause brings. This has been more of a mental challenge for me than anything else.
My son is coming up to his sixth birthday. He has only ever really know me as an ill Mummy.
They changed my chemo regime and I had six months of that as a precaution. I was still NED (no evidence of disease) after the six months so they decided to stop them chemo and then just test my bloods every six weeks until the CEA started to rise again.
Life in remission was amazing. We went on holidays as a family, I picked my little boy up from nursery every day. You can’t make plans or do anything when you’re having treatment. We just wanted to live life to the full.
I had six months of remission. At the end of 2015, my CEA marker started to rise and I knew the cancer had returned.
I went straight back on chemo. It kept the cancer stable. My radiologist spoke to me about HIPEC, which was done in Basingstoke – 134 miles away. I got home and Googled it and decided to ask my oncologist about it.
My oncologist wrote to Basingstoke and after meeting the surgeons a few times, they decided that they would be willing to operate on me. My private medical insurance paid for the operation. I knew that this surgery would remove more organs – I already had two ovaries removed, half my stomach and half my bowel.
It was planned that during the surgery my gallbladder, spleen and remaining large bowel would be removed as well as having a total hysterectomy, which they did along with stripping parts of my peritoneum. My colostomy would then be changed into an ileostomy. Then the hot chemo would be circulated around my abdomen in order to kill off any remaining cancer cells. It was a brutal operation. It took two weeks in hospital and then a further six weeks at home before I felt myself again.
The results from the HIPEC and surgery were amazing. I was back in remission. I didn’t need any more chemo and just had blood tests every month. I had a year without treatment. It was an absolute dream. I felt like just a normal wife and Mummy.
After over four years of living with this cancer, in and out of remission we have learned to live life fully when we can.
However, a year later in September 2017, my CEA markers spiked again. I knew the cancer was back. I had a few scans and once the cancer was visible on them I went straight back on chemo. As my cancer was still localised to the abdomen area, we thought HIPEC surgery would be possible again. My oncologist wrote to Basingstoke to see if they would be willing to do it. They didn’t agree straight away, but eventually they did and in June 2018 I had HIPEC for the second time. During the operation they removed a large part of my small bowel where the cancer had returned. I now only have about two metres of bowel left in total and I have to take about 8-10 loperamide tablets a day in order to make sure I don't get dehydrated and I actually manage to get some nutrients from my food.
I’m now back in remission and having regular blood tests.
My son is coming up to his sixth birthday. He has only ever really know me as an ill Mummy. We have always tried to explain to him what was happening as he didn't understand on chemo weekends why I would stay in bed and be sick. We explained that Mummy had naughty bubbles inside her and that the medicine I was having would get rid of them. I have my chemo at home and he sees and asks questions. As he is getting older he is beginning to know more about cancer. We have invested in some great books that have helped explain in a way he understands and not to frighten him. Sometimes an advert will come on the TV about cancer and death. It breaks my heart that I can’t protect him from all of this. We've had the conversations about the bubbles eventually getting too much for mummy's body and then I will then go to Heaven. As a family, we have cried many tears together. But I know my son has a great network around him and his school are excellent at supporting him.
My husband has been my rock. He has had to care for me over the past four years. Sometimes having to feed me, clean me and dress me all whilst also looking after a small child as well and working a full time job. I honestly don't know how he has done it all and continues to do it. I am so lucky to have him.
After over four years of living with this cancer, in and out of remission we have learned to live life fully when we can. When I am not undergoing active treatment we make sure we have some fabulous holidays and make some wonderful memories. We take so many pictures! Before my last operation we travelled to the Turks and Caicos Islands and renewed our wedding vows. It was very special and something we wanted to do before our 10 year wedding anniversary next year.
I am grateful to cancer for one thing and that is the fact that it has made me prioritise what is important in my life: time with my family and my friends.
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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