ovarian cancer

“Everybody Poos…”

but not every body poos in the same way…

This is probably my hardest post to write so far…but it might also be my most important…

I feel I have a responsibility to other warriors to break down barriers by sharing my story…

Ovarian cancer. Surgery. Chemotherapy. Hair loss. Wheelchair. Intensive care. Terminal. Incurable. Remission.

So many words and phrases have entered my world this year. Some have been easier to deal with than others. But one word stands out because I’d never beard it before.


I didn’t even know what a colostomy was… No one in my life had ever mentioned this word before.

After some questioning and research I discovered ‘colostomy’ meant life changing surgery. One end of my colon (large intestine) was going to be diverted through an opening in my tummy. This new opening is called a stoma and would be covered by a removable bag that is disposed of when full…but more on this later.

I was so confused. Why would I need this surgery?

I didn’t have bowel cancer. I had ovarian cancer…

Turns out however that ovarian cancer doesn’t much like to hang around in just the ovaries. It likes to spread to other organs and, in my case, it was now sitting on the surface of my bowel and would need cut away.

In the days that followed my approval for this surgery I had many appointments seeing stoma nurses. I was handed leaflets I couldn’t bring myself to read. I had conversations I didn’t listen to. My abdomen was marked for the ‘exit site’. I was in complete denial. This couldn’t be happening. Hadn’t cancer already done enough?

In the days following surgery I faced an 18 inch scar. Drain sites. Drips. Syringe drivers AND a stoma…another alien addition to my ever changing body.

As the days turned to weeks slowly these additions deminished. The drains were removed. The scars started to heal. The drips were wheeled away. But one thing remained. The colostomy wasn’t going anywhere. It was a permanent feature.

It was hard to come to terms with. It felt like the final shred of dignity I had left had been removed. I no longer had control over my bodily functions. In a ‘normal’ body you are able to control when you poo using the muscles in your anus. Your colon, however, doesn’t have muscles that you can consciously control. So if you have a stoma your body excretes waste whenever it wants. Any time. Any place. No warning. No control. Great!

So I learned that I’d now need to carry spare ‘colostomy bags’ with me wherever I went so that if my bag filled I could change it. I’d also have to carry wipes and bags to dispose the waste in. No more small handbag for me!

I was given a special card stating that I had a medical condition that allowed me to access any toilet anywhere – one small perk.

And also a special ‘radar key’ that allowed me to unlock any public toilet 24 hours a day 7 days a week – OK another small perk.

I was taught that I could no longer wear button up jeans as they cut off the bag and prevent it from working and would instead have to wear high wasted jeans or jeggings. I also couldn’t wear tight fitting dresses. Wait, you mean I have an excuse to buy a whole new wardrobe. No questions asked. Things were starting to look up!

Whilst it was hard to come to terms with at first, I began to realise that this was a result of life enhancing surgery. Would I, if given the chance, turn back time and say ‘no wait actually could you just leave that cancer in my bowel I’d rather not have a stoma’? Hell no!

Of course there are still hard times!

Like when I go to use a disabled toilet and I’m judged by observers because I don’t ‘look’ disabled.

Or when I use a toilet and there is no bin. No one wants a bag of poo left on the toilet floor!

Having an upset tummy is the worst! Usually when you have an upset tummy you give you enough time (hopefully) to get to a toilet. Not with a stoma. With no warning – that waste is making an exit whether you like it or not! If your bag sticks in place great. If not then all hell is breaking loose wherever you are! I’m not going to lie – I’ve had to bin a few outfits as a result of what one of my nurses affectionally refers to as a ‘code 20’. I’ve learned that having a dark sense of humour helps.

What also helps is people sharing their story about their colostomies. Did you know 1 in 500 people in the UK have a colostomy. And not just because of cancer. Sometimes because of Crohn’s disease or even from child birth!

With this in mind I’m pretty sure you know someone else with a colostomy bag! But there is still so much stigma attached to  discussing ‘poo’.

So what can we do?

We can celebrate the differences in our bodies.

We can stop being embarrassed by our bodies and what they do.

We can stop body shaming.

And, most importantly, we can stop taking everything so seriously…after all everybody poos just some of us are lucky enough to be able to do it ‘on the go’. See, I told you a sense of humour helps.

Love and light, Fi xx

ovarian cancer

The Hardest Part is ‘Looking Well’

I’ve come to realise that one of the hardest parts of living with stage four cancer is people not appreciating what that actually means in reality…

…that you are living with stage four cancer, essentially, for the rest of your life.

Unlike some cancers, it is not ‘curable’ and, as such, it does not ‘go away’. You do not ‘get better’. You live your life despite it or, as I like to think, because of it. It can be so frustrating when people don’t understanding this or when they think that because my chemotherapy is finished that I must be ‘all better’. 

They look at a photo of me on an evening out and think to themselves ‘she looks well, she must feel well too’. Unfortunately, that’s simply not always the case…

What people sometimes fail to realise is that a couple of hours out is paid for by a couple of days resting afterwards. They look at a photo and think that it paints the whole picture, whilst failing to realise that after that smile was captured I needed help to climb a flight of stairs, that I slept all the way home or that I was up all night throwing up. They read a post about me watching a comedy show but don’t realise that I only saw 20 minutes of it because I had to leave the show 5 times due to an upset stomach so bad my colostomy bag couldn’t control it, resulting in a scene similar to that time I looked after a baby with a nappy explosion that resembled a scene from “The Exorcist”…yes that’s too much info I’m sure but I promised to let people understand what living with cancer is really like – the good and the bad – and maybe someone reading this has been through similar and could benefit from reading that they are not alone…

You see, sometimes people forget…

  • They forget that 3 months ago I had five organs removed and four others partially removed.
  • They forget that treatment doesn’t end with chemotherapy. I still have a year of monthly infusions of Avastin and goodness knows what treatment after that.
  • They forget that I’ve just had 6 rounds of two different types of chemotherapy and that this will take months to recover from, and that’s without the additional recovery time needed from my surgery.
  • They forget that I am still healing, emotionally and physically, and that this sometimes takes all the strength I have.

I blame social media for this, and also, partly, myself. Lately I have been posting pictures of the nice things I’ve been doing like going to the opera and seeing Bryan Adams perform, but I’ve failed to discuss how this has made me feel physically. Yes both were amazing experiences and I’d never trade them in for anything, but they were also extremely exhausting. Following seeing these two shows within one weekend, I had to clear my diary for some well earned ‘me’ time to recover. I was just exhausted!…not like a tiredness you’ve experienced unless you’ve had chemotherapy, cancer or major surgery…we are talking out of breath from having a shower tired; needing to sit down after doing the food shopping tired; unable to clean your own house tired.

Not only am I physically tired, but I’m mentally tired too. A combination of managing tens of messages a day whilst also worrying about my upcoming ‘end of treatment’ scan has drained me of all mental capacity. I find myself numb and in need of recharging. This came to a head recently and I had a much needed rest from social media and my phone…something I will repeat in future as it was so refreshing to have some down time. As someone who loves nature and being outdoors, I had lost touch with the importance of a slower paced life, especially whilst recovering and healing. This is something I will now be focusing my energy on as I spend more time meditating, practicing yoga and walking in the woods.

 So, what am I getting at?…

Essentially I want people to:

  • realise that recovery isn’t instant, it takes time.
  • appreciate that whilst they may see ‘end of treatment’ and ‘cured’, a person with cancer may see ‘uncertainty’ and ‘fear’.
  • not to take someone’s apperance at face value, instead understanding that some pain is invisible (and that makeup can do wonders to hide an illness in the same way a smile can hide pain!)

Living with cancer has highs and lows. I feel extremely blessed for every day I have and try my hardest to live my life as best I can. Some days that means piling on my makeup and going to a comedy show. Other days it means pulling on my yoga trousers and meditating in the garden. Whatever each day brings I will not let cancer defeat my spirit. I will smile, I will look as unsick as I possibly can and I will laugh each day. That does not mean I am healed, or cured or pain free. It just means I am doing my best to recover from treatment and to live my life happily. There are so many invisible illnesses, both physical and mental. In a similar vein to my post about feeling vulnerable, all I ask is that everyone share joy and kindness and compassion towards others whenever they can. You just never know who needs it most.

Love and light, Fi xxx

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