Hi I’m Suzanne, I’m now 49, 50 in May, which is very exciting. In October 2009 my, at the time, 13 year old son, Sam, was diagnosed with stage 3 Nasopharyngeal carcinoma which is an incredibly rare cancer in the cavity behind your nose and throat. The shock of his diagnosis was indescribable. The fear, the agony of what the future held was incredibly traumatic. He was an inpatient at UCLH in London for a few months. He was managing a few days at home when the side effects of the treatment would allow. So my husband and I took turns staying with him in the hospital. It was during those days and nights on the ward that the bowel issues I’d suffered from since I was 18 really made themselves felt. I have been terribly symptomatic since I was a teenager. I’d been diagnosed with IBS and piles, so without thinking to question it, that's what I thought I had.
The stays in UCLH became really hard, mainly because our son was so dreadfully ill. I thought my symptoms had gotten worse due to the stress. When Sam finished his inpatient stays at the hospital and his treatment of immuno-therapy was able to be administered at home, I decided to go get my piles treated. I had the time, and more importantly the headspace to think about it. I also had private health insurance so I got my GP to refer me to a specialist.
The appointment happened to fall on the day after we’d had some great scan results for Sam. He was on track and responding well, so off we went to the hospital for the appointment. Both our boys were with us as we were heading out to dinner after. After all, I was just getting some advice on some pesky piles. It was at that appointment, that February evening that the surgeon decided to be thorough and did a sigmoidoscopy. I remember all too well feeling like the oxygen had been suddenly sucked from the room as he said:
“Mrs. Dore you have a tumour and it is my belief it it cancer”
The nurse went out to the waiting room to get Chris and we sat there in shock, in utter disbelief that the nightmare of cancer could be hitting us again. I had stage 3 colorectal cancer.
I know I didn’t take the news well. I had been symptomatic of cancer since I was 18, I was at this time 36, which meant the cancer had been there a significant time. To me, this only spelt death. How had it got to this point before being picked up? I had been going to my GP for years about it, at least 2 or 3 times a year in fact. They always said IBS and piles. I took them at their word. I was absolutely devastated that I was doing this to my family, after everything we had gone through in the last 4 months. I was scared, I felt guilt. It was incredibly difficult to go back into the waiting room to tell my boys. Sam was 13 and Ben, our youngest, was 11. What a horrendous experience for them at such a young age. We got the full diagnosis and treatment plan and I got incredibly lucky, because the type of cancer I had was unusual in a young body. It was a slower growing, older person cancer. Which meant that rather than the death sentence I had feared, it was treatable.
I had Chemotherapy, Radiotherapy , an AP resection (permanent colostomy and removal of anus and rectum) and an oophorectomy. I was so scared and traumatised about having to have a stoma. I went into the operation with tears streaming down my face. I was quite poorly in the op (but luckily I was asleep for all the drama. I do feel for the team working on me. I am so grateful to them). I came round from the surgery. I looked down at the newly formed stoma (they put a clear bag on to start with) and I felt a rush of emotion. I felt safe, I felt confident. And I just looked at it and said:
“oh, is that it?”
…and I never looked back.
I love my stoma life. It is bold, it is bright. It is sooooo much better than it was during the long and painful misdiagnosed years. I have been everywhere in the world I have ever wanted to go…and some that I didn’t, but went anyway. Last year I flew 22 times. I live life to the fullest. I never say no to new adventures, sign me up! I want in! I love my stoma. It may sound weird, but it’s given me my life as well as saving my life.I would like to add that my scars have healed, but the damage cancer left on my family is harder to heal.
My youngest was 11 during his brother and my diagnosis’. It has left a lasting legacy of anxiety and depression. It is my greatest regret that I couldn’t save him from it. Sam was heroic throughout his treatment and continues to be through his life dealing with collateral damage from cancer treatment. Ben is fighting a different battle but with equal heroism. I am in awe of both my sons. I am indebted to them and my husband for their love, support and dedication. I am so lucky. And forever grateful.
If you think something isn’t right please please don’t take one doctor's word for it. Push for tests. Better to be safe than sorry. And if you’re struggling emotionally please reach out. Help is available, speak with someone today:
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