Friday was global metastatic Bowel cancer day.
I hoped it might be marked by google having a smiley faced jobby on its search engine.
Or indeed perhaps several jobbies to signify the metastasis. 💩💩💩
But I was disappointed. I guess colorectal cancer is still not really mainstream in public awareness. Despite it being the second most common cancer in women. And the second most common cause of cancer death in the UK. Most people (I am an exception) don’t want to know or talk about their bowels. Which I think is why the majority of Bowel cancer (also called colorectal cancer) presents at a later stage.
For me and many others with advanced Bowel cancer this is a personal tragedy. My doctors have told me I’m not curable. Statistics say I’ve got just 8% chance of living more than 5 years from diagnosis. Yet if only I’d caught this disease before it became metastatic and spread to other parts of my body… it’s 98% curable at the early stage.
So dear friends if you have any of these symptoms please go to your GP and demand a colonoscopy:
- Blood in your poo (regularly)
- Ongoing changed bowel habits (by this I mean going more frequently or diarrhoea)
- Persistent pain in your lower abdomen especially after eating.Other symptoms are weight loss, anaemia and fatigue.
I know I’m sounding like the spokesperson for Bowel cancer UK’s metastatic Bowel cancer awareness campaign. But actually it turns out I AM THIS PERSON!! Amusingly I discovered this on Friday when liam started choking on his morning coffee after finding our wedding photo was the top story in the Scotsman’s website. I hadn’t told him that Bowel Cancer UK had approached me a few weeks ago to be a case study for their publicity campaign. I was delighted to pimp out my story and raise awareness but liam is less enthusiastic at his mug being shown alongside mine. 😀
I never in my wildest imaginings thought I’d become the public face of Bowel cancer.
Life really does the strangest things to you. I am laughing heartily at this but it’s like a crazy nightmare.
While I’m the public face of Bowel cancer let me just take the opportunity to introduce you to some intimate facts about my bowels.
The strangest fact is that I actually don’t have cancer in my bowels! The surgery I had removed the cancer so actually my remaining colon is now perfectly healthy (as far as I know).
Now before you all demand your money back the problem is those bastardy little colon cancer cells have spread or metastasised elsewhere in my body and they have also recurred at the site of a cancerous lymph node that was removed in the surgery.
So now I’ve got over a dozen tumours within my pelvis and at least three in my lungs.
When the cancer migrates to other parts of the body its referred to as stage 4 cancer (4 being the most advanced). It’s also known as metastatic cancer or secondary cancer because it has spread from the primary site. So even though it’s now in my lungs and within my pelvis it’s actually still colon cancer. If the cancer cells were scrutinised under a microscope they would be found to be cells from my colon.
Another funny thing is that I don’t feel like I’ve got cancer! I can’t feel these tumours yet. Occasionally I get twinges and before i started on chemo they were definitely causing me pain. But right now I’m lucky enough to be symptomless and very grateful for every moment of it.
Although the chemotherapy is causing me a bit of grief.
I’m 8 cycles into this batch of chemo now and I have a plethora of minor irritations and maladies worthy of a bevy of old ladies at the bus stop.
I’m constantly immunocompromised and this week I’ve had some kind of upper gastro virus which makes me feel like I am gulping down marbles every time I swallow. I have an open sore inside my mouth. I have to take a pain numbing mouthwash before I eat or drink. My feet are also really sore. In fact I am hobbling so much I’ve done my back in. My nose is constantly drippy and I’m getting nosebleeds all the time. My voice is croaky and I can’t sing. Sometimes it’s hard to pee. It’s always hard to poo and often sore too.
But I still have my hair! No it’s not because I’m getting a ‘soft’ version of chemo, it’s because this particular chemotherapy targets the epithelial linings ie from the inside of my mouth down to my rectum, so my hair won’t fall out but my inside linings get pulverised.
But all these little niggles pale into insignificance alongside the fact that it is working.
The chemotherapy is working in so far as it is stopping the cancer from growing. It’s even shrunk it a little. But it’s not going to get rid of it. And I don’t know how long it’s going to keep it at bay. The average these drugs usually work for is a year but I’m taking an extra targeted therapy (called aflibercept) in the mix so it’s not known for how long this combination will work. My dilemma is whether to keep going till it stops working or to stop what is working and go out to China to do an experimental therapy that may not work. At least I now have some more time to think through my options.
Its been 2 years and 3 months since I was diagnosed with cancer. When I first got told my cancer was stage 4, metastatic, incurable, I was utterly bereft and spent a lot of time grieving for myself and my children. But I’ve got to a place now where I’m happy again every day. Mainly because I don’t believe it’s going to happen to me. There is a lot to be said for the blissful state of denial. I feel really well. Apart from the chronic fatigue and niggles of chemo. I’ve got a lot of hope. I think I’m going to be around to front up many more metastatic bowel cancer days in the future and maybe even be here for the day metastatic bowel cancer is marked by a poo emoji on google’s search engine. Life does funny things to you and I really hope it’s going to pull something unexpected out of the hat for me again.