Embracing life’s journey: My battle with colon cancer
My world shattered
In February 2021 my father passed away. He woke up one morning struggling to breathe and my mother called for an ambulance and rushed him to Lister Hospital, Stevenage. He was diagnosed with Covid-19 and was kept in isolation. A few days passed we heard that he was up sitting on the chair beside his bed and making conversations with the staff and enjoying his dinner. I thought he was on the mend but shortly after his dinner, his health declined and, in the early hours of the next day, we were told to come in and say our goodbyes. After seeing him we were told to leave the premises as a precaution as the hospital was on lockdown and we could not be seen loitering in the corridors. I didn’t sleep that night and as the sun rose from the east breaking through the tick clouds I received a phone call from my baby brother to say he had passed peacefully.
The unexpected diagnosis
I’ve been on a health craze over the last two years. I felt it was time to make a change and live a more healthy lifestyle as an example to my two young children. I was eating clean and exercising regularly and I rekindled my passion for cycling. I was making my own smoothies packed with spinach, kale, pineapple and chia seeds every morning. I made my own salads and gave up sugar for a while. My energy levels were through the roof and my confidence too. It was the only time, that I can remember, being comfortable in my own skin and happy with my body image. That was until I started to feel a sharp stabbing pain in my lower abdomen. I felt constipated, bloated and exhausted all the time. I saw the doctors on three separate occasions and I was told it was stress due to recent events and then it was IBS.
Over time the stabbing pains were replaced with cramps and I could feel a lump growing inside my lower abdomen. And, after taking the medication prescribed to me without success, I went back to my GP and demanded a blood test. The GP continued to dismiss the lump and told me to persevere with the medication. However, I knew something was not right and I did not budge from my seat until I had confirmation of at least one blood test. The doctor reluctantly agreed and I wasted no time in getting the test done. A few days passed and I received a call from the GP to say the blood test came back with an ‘alarming’ amount of inflammation in my body. I was asked to carry out another test to ensure it wasn’t a duff. Three blood tests later, all having the same results, I was referred to a Specialist who would take over to figure out what was wrong with me.
It was early May 2021, when I saw a Consultant who said that, in his opinion, it was more likely Crohn’s, but he wanted to be sure and arranged for a colonoscopy just to make sure. During the colonoscopy I was given I light sedative to ensure I was kept comfortable during the procedure. However, as the colonoscope (a long flexible tube with a camera on the end) pushed closer to where I felt the lump, I felt an intense stabbing sensation and screamed out in pain. The Consultant didn’t flinch and gave me a heavy dose of the sedative which knocked me unconscious. When I woke up the Consultant walked through and sat beside me. He removed his spectacles and faced the floor and said ‘I’m sorry Mohammad, we found a tumour in the same area of which you could feel the stabbing pains and we believe it to be cancerous’. He went on to tell me about the next steps, but my mind had already left on a downward spiral; My thoughts were with my mum who had recently lost her life partner, and my children, who had been introduced to the concept of death at such an early age. How do I tell my loved ones of this awful news?
High as a kite
With all the medication, including chemo and steroids, I can’t even tell you what day it is. I’m having to continue my chemotherapy at home in a small canister which extends the treatment for an additional 2 days. However, after the second round of chemotherapy, I fall ill, very ill. The booster injection that was meant to kick-start my immune system fails and my health rapidly declines. I’ve contracted a life-threatening infection which is tearing my lung wall and causing inflammation of my ribcage and making me delirious. I’m kept isolated on the 11th floor of Lister Hospital due to being a ‘high risk’ patient. After a course of 3 different antibiotics feed through an intravenous line given to me 6 times a day I manage to fight the infection and I was sent home after a few weeks of being in the hospital, but 10 hours later I’m falling ill again. I repeat the IV antibiotics but my health is not improving. The doctors suspect that my bowel has perforated and after a scan of my abdomen, the tumour has grown to the size of a small watermelon. They decide to carry out an emergency surgery to remove the tumour and create a stoma. Several hours later I’m in ICU because my condition is considered to be critical.
A ray of light
I manage to fight through and make a steady recovery. Even though I contracted sepsis and pseudomonas aeruginosa pneumonia, I remained in isolation before being moved to a rehabilitation centre. Before the transfer, I mentioned the shooting pain in my right leg, which my Surgeon said I’ll be able to ‘walk it off’. However, at the rehab centre, the shooting pains worsened and the staff were concerned that the pains would need to be investigated by the Hospital but they were unable to take me back. It took a further 6 months for a diagnosis at the Queen’s Hospital, in London, the centre of neurology, which determined that I had ‘chronic and severe’ nerve damage to my right leg foot, numbness in both feet and medium nerve damage to my left leg and right arm and hand’. Unfortunately, there isn’t a cure and as it was left uninvestigated for a prolonged time, the only way forward would be through pain management (medication) and physio. It was thought I would never walk again.
Never gonna give up
Determined to get back on my feet I dabble in a range of non-medicinal therapies. Some worked and some didn’t but the most remarkable and game-changing therapy was an Osteopath who helped me with my movement and stability in a matter of 4 weeks. The only issue I had now was the blasted stoma bags I was given by the Stoma Nurse. The bags were horrid, with a rigid plastic seal and sharp edges cutting into my skin. The bags would come loose and they wouldn’t hold and they would burst frequently. The adhesive left a flaky residue causing me significant stress and discomfort. Moreover, I developed a rash around my stoma and became miserable in the process. I despised having a stoma as my quality of life suffered significantly. I wouldn’t go out with friends or family as I didn’t have the confidence that the bags would behave whilst I’m outside. And, I was let down by the supplier on a few occasions causing me to rearrange my colonoscopy three times and on one occasion, I was left without any supplies as my email was left ‘unread’ and so I had to trace the internet for a supply of defective bags. All in all, I was miserable.
My hero
After chewing my Stoma Nurse’s ear off of how downhearted I had become and being left without a resolution to my woes, I scoured the internet and social media for a resolution. One day I saw Maryrose @big_c_stomaandme on Instagram and she was promoting a company called Respond Healthcare on her social media account. I’ve never heard of them and I wasn’t aware that you’re able to change suppliers on the NHS, it was never mentioned in all my conversations with my Stoma Nurse. I clicked the link in her bio and filled out a questionnaire on Respond Healthcare’s website and the next day I got a call from a lovely lady from their customer service team. She got to know me and my needs and made some recommendations of products which were kinder to my skin and formed a stronger seal, e.g. aloe rings and a vitamin E adhesive remover spray. She said that she will take care of the transfer and have my products delivered in the next few days. To my delight I not only got all the products I had asked for, including the spray and aloe rings, I also got a load of free samples of other products in their range and a nice wash bag too.
Hope for the future
I’m delighted to say that I am happier than I have ever been with my stoma, since the surgery and I have grown to love my stoma. I have had fewer leakages (far, far fewer) because of the superior hold with the combination of the aloe ring and a good-quality stoma bag, and my rash has all but disappeared. It’s remarkable, to say the least, by having the right products that are much higher in quality and tailored to kinder on the skin makes the world of difference.
I’m telling all my friends and family about it and my appetite is back in full flow. I’m going out more and socialising and I manage to attend my children’s sport day for the very first time without any issues. The stoma bags have given me a new lease of life and my family see a dramatic change in my mood. I come across many individuals from my community who have put off their surgery for a stoma because they feel it will have a negative impact on their life. Many of them suffer from some form of IBD and have been misinformed and so I share my story with them to give them a true account of what it is like to live with a stoma.
A new chapter
After writing to Respond Healthcare about my experience and praising their customer service team I was invited to their Get Together of all their Ambassadors for a private dinner and a photo shoot. I had the most amazing time getting to know others and finding out their journey of how they came to have their stoma and how they became an Ambassador, and getting to know the wonderful people at Respond Healthcare. To have met so many people with a stoma made it that more special for me and I was made to be right at home. I couldn’t stop telling everyone about my experience, from the fine food dining to being included in their photoshoot it will be a memory of a lifetime. A couple of days later, after my feet had touched the ground, I received an email asking if I could become an Ambassador, and when I asked my wife and children, what do I do? They screamed, “YES! YES! Do it, do it now!”. I had already sent my response before asking them, but I wanted to see the look on their faces when I told them.
Thank you Rachel and Nia from Respond Healthcare for making me a part of your family and I hope I can do you and your team proud as an Ambassador.