When I was pregnant with my second child, I knew that I had bowel cancer. You know your body, you know if something is wrong, and I knew. This feeling combined with textbook symptoms and a basic knowledge of bowel cancer due to a strong family history (my mother, grandmother and great-grandfather all died from bowel cancer) left me convinced it was the only thing it could be. Even so getting a diagnosis was not as easy as it should have been.
I had been getting rectal bleeding on and off, since around 2006. Over the years I had visited various GPs but they always said the same, that I was too young to have bowel cancer and if the bleeding went, there was nothing to worry about. The bleeding stopped so I breathed a massive sigh of relief, swiped the sweat from my brow and went on in the blissful ignorance that not thinking about things like ‘your health’ brings. I now know that the bleeding was polyps in the colon which bleed intermittently and grow into cancerous tumors. With the benefit of hindsight this was the beginning of my body developing cancer cells and could have probably been dealt with in the early stages if my initial concerns and symptoms had been taken seriously at the time.
The rectal bleeding and pain became intolerable during my second pregnancy. After what can only be described as an argument with a GP, I was finally referred for a flexi-sygmoid (camera up the rectum) which is as pleasant as it sounds! I remember thinking that it would be the worst thing in the world and now I know that there are much worse things, like chemotherapy, so everything in perspective, people! Going into the hospital for the test was awful, but they found the cancerous tumor straight away and further tests were immediately arranged. I was far from a shocked when the consultant told me he had found a tumor and he believed it was cancerous. The consultant kept saying, I’m sure this comes as a massive surprise to you, I said, “no, not really”! The consultant was shocked, as was the nurse, they kept repeating that they had never met anyone my age with bowel cancer, it was unheard of, things like that. Well if you are going to have cancer, might as well make yourself a medical marvel at the same time! I ended trying to comfort them, was very strange, but if you have cancer you will probably find that looking after the person you’ve just told, happens a lot.
Further CT, MRI and PET scans showed the cancer was as advanced and severe as it could be without being terminal. My surgeon would later tell me she thought I had cancer for around 4 years (meaning through both my pregnancies) and if I had waited even another 6 months there would have been nothing they could do. It was so far spread that I needed what the doctors kept calling ‘radical treatment’. This included three months of chemotherapy, months of daily radiotherapy combined with chemotherapy. Followed by a 12 hour operation to remove a large part of the colon, all the surrounding muscle and tissue, the pelvic floor muscles, the rectum and the back wall of the vagina including surrounding muscle and tissue, all just to remove the cancer. Next they were removing my core stomach muscles on one side (I know I never had a 6 pack before but it’s kind of nice that I can blame this now!), threading them through my pelvis so a team of plastic-surgeons rebuild certain areas with that muscle. One of the many joys of having surgery to remove cancer is that is can cause cancer (one of life’s quirks) so surgery was followed by another three months of chemotherapy. Overwhelming? Yes. Do-able? Absolutely! I was determined to rid my body of this disease and actually couldn’t wait to get started, knowing every bout of chemo would be killing more of the disease.
The reality of my treatment wasn’t quite that positive. I found it impossibly hard and there were moments when I wanted to give up. I know there is no ‘good’ time to have cancer but I did feel particularly unlucky to have it with a 3 month and 2-year-old. I felt like I missed most of my daughter’s first year. After getting to spend every moment with my son when he was a baby, this was really difficult for me. I missed the first time she rolled over and sat up; the nanny who we were forced to hire enjoyed these moments. I will always remember fondly that when my daughter stood up and lifted her leg as if to take her first step, our nanny quickly pushed her over before she could, and carried her around for the rest of the day so that I wouldn’t miss it – bless! And I was there to see it. When I was finding it hard, my husband used to say; “she doesn’t care if you see her roll over for the first time or not, she cares that you are alive, to be with her and watch her grow up.”
I knew that come the end of treatment if everything went well I would no longer have cancer but I would have… …infertility, early menopause (at 31 years old) and a permanent colostomy bag. Truth be told, I struggled with finding out I needed a colostomy more than finding out I had cancer – cancer I could deal with, this I couldn’t. I thought it was the absolute worst thing that could happen to me and I went into a very strange denial about the ostomy, praying it wouldn’t happen. I actually said if I didn’t have kids I would prefer to die than have a colostomy - this sounds so over-dramatic now but I have heard other people who need colostomy’s say the same thing. I only wish I could go back to my pre-operation person now and tell her that it wasn’t going to be anything near as bad as she is expecting.
I have never hidden the fact I have a colostomy but I didn’t used to be overly vocal about it either. Why? Embarrassment essentially. It still has a terrible stigma and I was beset with fears about the things I wouldn’t be able to do and what people would think when they found out. My worst fear bring that people would think that it/I was minging. A fear that derived completely from my own thoughts and perceptions about it what living with a colostomy meant.
I was also worried about what it would be like for my children. I was worried about the possibility of them getting teased at school when their friends found out, or they would think I was strange. I was upset at the thought of never getting to go swimming with them. The truth is, swimming is no problem at all (as I have spoken about here), and they think it’s normal. My son asked me recently if all mummy’s have them, obviously I said no and explained that I have one to stop me getting very sick again and he was more than happy with that.
The bigger picture of why someone has an ostomy can get forgotten. In my case, it means that I no longer have cancer. In other people’s cases, they no longer have a life-threatening and debilitating illness. One person told me how her surgeon told her ‘either you have a bag or end up in a bag’. Although this wasn’t delicately put, it serves well to remind us that it is what someone is facing going into ostomy surgery. Without this operation, they will die. Yet to some (myself included) having it is still unbearable. As I said before, I thought if I didn’t have kids I wouldn’t go through with the operation (I will always laugh thinking of my sister saying, “what about me, aren’t I worth living for?!”)
The thought of having an ostomy is immeasurably worse than the reality. I never thought I would get used to it, yet only a few months after surgery I was telling someone who needed a colostomy that it was nothing to be afraid of and I was managing okay. I was shocked as the words came out of my mouth, I couldn’t believe I had said it and that was when I realised – it was true! I could do this, I was, doing this. Do I wish I didn’t have it? Yes. But on the whole is it perfectly manageable and there is nothing that I did before that I can’t do now.