Laila Hudson, Glasgow
I was diagnosed with stage 4 bowel cancer in June 2020 at the age of 27.
Little did I know but my symptoms started in the summer of 2017 when I was diagnosed with anaemia. Over the next three years I would need multiple courses of iron tablets for recurrent anaemia.
It was never investigated due to my age and I know now a simple FIT test would have shown why I was losing blood and prompted further investigation. I had zero awareness of bowel cancer symptoms at this point in my life so I never questioned why I had such persistent anaemia.
My more glaring symptoms started in April 2020. My stomach was extremely distended and bloated constantly – I felt like I had a bowling ball in my stomach. I was suffering an intense spasm-y type pain that felt almost like trapped wind. I had lost my appetite and felt full very quickly. I felt like I needed to pee constantly and had a stabbing pain in my bladder when I urinated.
I was on the phone to the doctor constantly and was prescribed various antibiotics and irritable bowel syndrome (IBS) medications. Due to COVID, the doctors were reluctant for me to go into the surgery for a physical examination.
Shortly before my symptoms began, my Mum had been diagnosed with an aggressive brain tumour and I had moved in with her and my Dad in March to care for her. The doctors were quick to blame my symptoms on stress. I started meditating every day to see if this would help.
I then began getting a severe and absolutely debilitating new type of pain that left me unable to move even an inch and the doctor finally agreed to see me. As soon as he palpated my stomach he felt what he described as 'several masses'. He said it could be an ovarian cyst or a fibroid and I was put on the urgent two week referral for an ultrasound though he said due to the pandemic it may take a while.
The night after that appointment my pain became even more severe and I was referred to the local hospital as an emergency. I had an ultrasound that evening and a huge mass could be seen on my ovary (20x20x19cm – no wonder I felt like I had a bowling ball in my tummy!). The ultrasound technician wouldn't tell me what she thought it was, just said I needed a CT scan.
I was then informed by a doctor that it was an ovarian cyst and I would need surgery either that night or the following morning as they believed the mass was twisting my ovary which was causing the intense pain. She didn't seem too concerned about the cyst so neither was I.
The following morning a gynaecologist surgeon came to speak to me and said they were concerned that I may actually have ovarian cancer as my tumour markers were very high. I was obviously distraught and in hospital all by myself. I didn't tell my family that the doctors suspected cancer as I didn't want to worry them.
I had a CT scan and was then whisked down for surgery. Because the mass was so large, they had to do open surgery. They took out the mass, my left ovary and fallopian tube, and my appendix which they said looked inflamed. When the surgeon came to speak to me she warned me that the mass looked 'irregular' but they wouldn't know if it was cancer or not until the pathology report came back.
I recovered well and was discharged four days later. I returned to my parents' house though I could no longer carry out my caring duties for my Mum due to the surgery which was really difficult for both of us. Thankfully we were able to get carers to come in and help.
The pathology report came back shortly after my surgery and stated that they had removed a Borderline Ovarian Tumour. The letter stated 'this is not cancer and you need no further treatment'. I was absolutely delighted and felt the most immense relief.
However, the spasm-y pain that had started in April had not gone away and was in fact getting increasingly worse. It seemed to peak in the evenings and sometimes became unbearable, to the point that one evening I had rung NHS24, only to be advised to take some stronger painkillers. I had been recommended for a colonoscopy following the operation due to a small polyp found on my appendix. It was at this point I began to wonder if there was something more going on.
I was on the phone constantly to various doctors explaining that I was still in severe pain and I was concerned there may be something wrong with my bowel. I was dismissed repeatedly, advised my CT scan showed my bowel looked normal and that they would have seen anything untoward during the operation.
I was advised due to my age they weren't concerned about any 'significant bowel pathology'. This reassured me somewhat but didn't solve the problem of the worsening pain. They advised me that the colonoscopy would be a routine procedure and due to covid there was a huge backlog so I would most likely be waiting a very long time.
I was sent home again where I suffered another week of debilitating pain and vomiting, unable to eat more than a couple bites of food at a time, spending most of my time in the fetal position in bed and diligently keeping a food diary as suggested. It was a very distressing time for me and my family. I really didn't know how I was going to carry on with that level of pain.
The following weekend I was admitted to hospital once again due to the severity of the pain and uncontrollable vomiting. This time I was sent to General Surgery who decided to do a CT scan. Initially I was told the scan showed I had fecal impaction and that once the blockage was cleared, I would feel better and could go home. I was delighted that there was such a simple explanation and solution and rung my family to tell them, joking about being 'full of sh*t'.
I stuck a few suppositories up my bum, drunk some laxatives and patiently waited for some sweet relief... to no avail. A few hours later the doctor came back to speak to me and said they'd like to keep me in until Monday to do a colonoscopy. When I asked why, he said they were concerned about the 'mass' looking 'marked' on the CT scan. I didn't read too much into this, I was just grateful they were finally going to get to the bottom of my pain and hopefully get rid of it.
That night the pain somehow managed to reach a whole new level (definitely an 11 on the pain scale) and I remember literally screaming and clinging onto the bed for dear life while they pumped me full of morphine. The doctor came to speak to me deep in the night and advised me that they had sought a second opinion on my scan. I had a tumour blocking my bowel and it was most likely cancerous. I was on so many painkillers that I was unphased by this bombshell.
By this point my bowel was completely obstructed. They could not perform a colonoscopy due to the risk of perforation so decided to go straight to surgery instead. There was no mention of my ovarian tumour and I had forgotten all about it.
The following day I had a bowel resection via open surgery. I had three quarters of my colon removed and woke up in a lot of pain – I had barely recovered from my first surgery and here they were slicing me open again! I spent five days in the high dependency unit and was then moved back to the general ward on Friday.
I found the recovery tough and rather than my pain decreasing, I found it was actually getting worse. My CRP markers had also remained very high and were still at 300 six days after my surgery. On the Sunday the surgeons decided to do another CT scan to investigate. They found that the new join in my bowel was leaking and causing sepsis.
I was rushed back into surgery that night which was terrifying. I only had about an hour's notice and hurriedly informed my family. The surgeon said they would try and patch the leak but I may need a stoma. There wasn't even time for this to sink in as I was whisked down to surgery.
I cried in the anaesthetic room as they prepared to put me to sleep. I couldn't imagine putting my body through yet another major surgery.
I woke up in recovery after midnight in intense agony. I felt like I'd been gutted like a fish without any pain relief. For my first two surgeries I'd had opioids injected into my spine prior to being put to sleep but due to the infection, I couldn't have it done for my third operation. The pain was horrendous and none of the painkillers they were giving me seemed to be doing anything.
The following five days were the worst of my life. I felt so ill and was in so much pain, my body felt like it wanted to die. I had tubes coming out here, there and everywhere, I could barely move, I was unable to eat, felt extremely nauseous and my bowels were in intense spasm as they tried to get working again. I had also woken up with the dreaded stoma and I was devastated. I couldn't look at it and cried every time someone came to empty or change the bag.
On top of all this, I knew my mum was at home, worrying about me and wondering where I was and I was wasting what precious time she had left stuck in hospital. The recovery from my third operation was slow. My poor veins had given up the ghost after so much poking and prodding so I had a PICC line inserted. I had lost a lot of weight and now weighed less than eight stone so I started Total Parenteral Nutrition (TPN). I weighed so little I wasn't even allowed a full adult dose of paracetamol! I was on a lot of different drugs including several IV antibiotics for the infection and fentanyl and oxycodone which barely helped with the pain and generally made me feel like I was on another planet.
I could barely look at my phone for the first five days, refusing to answer texts or calls and generally feeling in the darkest place imaginable.
The nurses in HDU were incredible and they went above and beyond to make me feel cared for and comfortable. They even shaved my legs, plaited my hair and once I had my catheter removed, wheeled me all the way to the ICU toilet so I didn't have to use the commode. It's these small acts that help make you feel a little more human while in your most vulnerable state. With no visitors allowed due to covid, I relied a lot on them for emotional support and I will never forget their kindness and care.
I was informed that the colon tumour was a type of cancer called mucinous adenocarcinoma and they were having a multi-disciplinary team (MDT) meeting to discuss my case. I was still optimistic that they had removed all the cancer and that would be all the treatment I needed.
There had still been no mention of the ovarian tumour. After the MDT meeting, I was informed they had re-examined the ovarian tumour and it was in fact a metastasis from the bowel tumour. My final staging was T4N1M1. I was absolutely floored. I had gone from being told that I definitively didn't have cancer to finding out it was stage 4 in a matter of weeks. I hadn't really batted an eye when I found out I had cancer but to find out it had spread, I was terrified. I asked the doctor 'does this mean I'm going to die?' She just said 'we'll try our best to stop a recurrence'.
She informed me they wanted to treat it aggressively and I would need six months of chemotherapy. I was devastated. I couldn't imagine putting my body through even more trauma, it felt utterly ruined and broken.
My recovery continued in hospital and I was eventually moved back onto the general ward. I'd been in hospital three weeks when I got a call saying my Mum had taken a turn for the worse and probably only had a few hours left to live. My discharge was expedited and I was rushed home to be with her. She died an hour and a half after my arrival.
There are no words to describe the pain that I felt. I had lost my rock and best friend and was about to embark on the most difficult period of my life without her.
After the funeral I returned to Glasgow where I usually reside and had all my care transferred over to the Beatson Cancer Centre. I had lost all faith in medical professionals by this point and my experiences in my previous hospital were nothing short of traumatic. I was looking forward to a fresh start.
My oncologist is fantastic and he reassured me right from the start that they would do everything they could to restore my trust. I finally felt listened to. I started chemotherapy seven weeks after my third surgery.
Chemo was tough and got harder with each round. My wonderful flatmate was an amazing support to me and made it all so much more manageable and bearable. She took such good care of me and I truly couldn't have done it without her.
There were some good days between each cycle and I even managed to walk a sponsored 10k and raised £4000 for The Brain Tumour Charity in memory of my Mum. I was really proud of myself and it gave me something positive to focus on during treatment.
I was supposed to do 12 rounds of chemo but my treatment was fraught with complications. My first PICC line got infected so I had another one inserted which gave me a blood clot. They tried to get a third one in but my veins were too damaged so I had a Hickman line inserted. Unfortunately this went on to give me a rare infection called nocardia which caused an abscess in my brain.
My treatment was stopped and I spent two weeks in hospital just before Christmas getting IV antibiotics. Nocardia infections require 6-12 months of antibiotic treatment so my oncologist decided it would be safest to stop my chemo after eight cycles. I'm hoping this is enough to stop the cancer coming back but I am plagued with fears of recurrence, especially as a stage 4 patient.
All I can do is live in hope that I will remain No Evidence of Disease. I am hoping to have my stoma reversed this year. I have an end ileostomy which unfortunately means I will require another open surgery to reverse it but I'm very grateful that they are giving it a bash.
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.