I have been writing about my Bowel Cancer journey since December 2017, but not on a proper blog. I have a Facebook page, Twitter, Instagram and a Medium account, and have now finally set up a proper WordPress page. Well, I think it is a proper grown-up WordPress page, but despite considering myself quite good with technology some of this stuff still confuses me.
So, yes, finally doing a proper blog, and I guess I ought to start at the beginning and the beginning was not even December 2017, that was just when I started writing about it all. It all started back in April 2014 when I first went to the doctor with symptoms, what were those symptoms? I had changeable bowels but had become more constipated, rectal bleeding, a feeling of incomplete evacuation on going to the toilet and mucus on wiping. Only paragraph two and I’ve already divulged more personal information than you were expecting from a complete stranger, huh!
You would be forgiven for thinking that at this point I was sent to the hospital for further investigation, unfortunately, I was not and I was fobbed off with a fissure and a bit of IBS. You may think it was quite reasonable for the doctor to feel the bleeding was explained by the fissure and to assume IBS rather than something more sinister in a then 35-year-old woman, and you would be correct if the bleeding had resolved when the fissure did. However, the bleeding continued after the fissure had healed but I was just told to go back if the bleeding got worse. Confused? So am I now looking back, how exactly was it OK for me to still be bleeding from my bum with no explanation? I still do not know the answer to that.
I did not want to believe there was anything seriously wrong, and I accepted my doctor’s explanation and was relieved by her lack of concern. Nothing really changed so I carried on as normal, that is until April 2016 when I ended up in A&E with what I thought was a rectal prolapse. Three months later I had a camera look inside me and they found a polyp in my bowel. I did what we all know we should not do but cannot stop ourselves doing, yes I Googled it! Yes, I also came up with the worst case scenario of Bowel Cancer, then had to talk myself down and tell myself off for using Dr. Google.
More cameras, and a referral to a more specialist hospital for more cameras and removal of the polyp with doctors all along the way telling me I was too young for this, and me having this gut feeling that Dr. Goolge was right. September 2016 and the news I had been dreading finally came, you guessed it, I had Bowel Cancer. I was told I needed an operation and that they needed to do it within 4 weeks. Was I shocked, not really, I think the poor doctor who had to tell me was more shocked as I started asking lots of in-depth questions.
I had the operation in October 2016, they removed the cancer and a lot of my rectum, I did not understand the significance of the loss of my rectum at that point. I dealt with the new fashion accessory I was sporting in the form of an ileostomy bag, yes a bag to collect my poo so that my bowel could heal. I went through six months of chemo, then in October 2017 an operation to get rid of the bag and put my body back to normal, that is when I realised normal was never going to happen again and my rectum had been more useful than I had realised.
A few weeks later when I was due to return to work, disaster struck, my body decided that my anus was not the only exit for faeces, a recto-vaginal fistula had formed and I freaked out. November 2017 a scan to see how bad things were and to check on how effective the chemo had been, the results were not good on both counts. The cancer was back, in my lungs and apparently incurable, to top it off there were no guarantees they could fix the fistula either. After much discussion with very experienced surgeons, I told them to remove what was left of my rectum, sew up the hole in my vagina the fistula that had formed not the fun hole, and give me a permanent colostomy.
This is when I started writing about it all, I was 38 and was dealing with the fact that my life was going to be cut short, I had no idea how short and I still have no idea! Of course, my first reaction was devastation, my thoughts fell to my two children and how would they cope without me and how unfair it was that I would not get to see them grow up. Then I realised that being upset about it was not going to change it, and I had to make the most of what I had and that I wanted to do something positive with whatever life I had left.
What have I done to make the most of things? The key thing has been to spend more time with my husband and children, we have been on quite a few holidays together and I now flexi-school my children which means I have them at home one day a week. What about doing something positive with my life? Well, I do whatever I can to raise awareness of Bowel Cancer, particularly young onset Bowel Cancer. Why do I focus on raising awareness? Early diagnosis saves lives, the earlier someone gets diagnosed the better chance of being cured, and awareness of symptoms and the impact of Bowel Cancer encourages people to get checked out by their doctor. Not only does raising awareness encourage people to get checked out, but it also empowers patients to know when to push for more, I wish I had been more aware when I first went to my GP.
So there you are the background story to why I write about Bowel Cancer and share my journey. It would be too much to fill you in on everything that has happened in the last year, but a few major events need mentioning to bring you up to date. I had more chemotherapy for three months in early 2018, I decided to take a break from chemo as it made me feel so ill, and in September 2018 there was no real change in the tumours in my lungs so the powers that be decided they could and would operate. I had two major lung operations to clear my lungs of tumours and in November 2018 I had a clear scan. We do expect the cancer to come back but hopefully, this will slow it down quite a lot. I am due to start more chemo in January, but we will see………
So now you are up to date with my journey although if you want to know more about me and what I have been up to over the past year, and yes I have been up to quite a lot and not just laying in bed feeling sorry for myself, then do check out my social media accounts by searching for me Bowel Warrior or @bowelwarrior.
You will have realised that there is nothing I will not share, write or talk about, and I hope you will be open to reading more, so until my next post and I promise not to pack in so much boring medical stuff next time, it was just necessary to get this started 😉