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

Find me on Facebook.

12 thoughts on “The Hardest Part is ‘Looking Well’”

  1. I am in awe of how you are coping – just wishing you the best and that you continue to fight as you are doing up to now.

  2. Perfect Fi. You’ve nailed this topic which can often be hard for folk to understand. X

  3. I loved how you explained this. For me, I always remember that most people post the best 5% of their life on FB and the other 95% probably runs the spectrum of ordinary to extremely shitty. When I have read your positive posts, I always think to myself that you’re going to be paying for that tomorrow in tiredness and, most likely, sickness, but I have deep admiration for you for digging deep and getting out to enjoy some slices of life…even though for you, those moments can be brief.

    Again, for me, I would never say to you: “But you don’t look sick”. I’d tell you: “By God, Fi. You look fantastic for what you are going through and what you must live with for the rest of your life. You’re an inspiration to many and if you can manage to put some lipstick on and get out for an evening, then so can I”!

    Lastly, I’d tell you not to think about those people who don’t think you are sick because you don’t look it. Take it as a compliment, as you run to that bathroom during intermission!!! xxxxxxxxxxxx

  4. Know exactly how u feel Fi, I live in fear, when I have check up every 3 months. All we can do is hope ,and pray one day, there will be a cure. Love and hugs, Linda xxxxx

  5. Hi Fi, I m OK like u just plodding along, loathe the check up s , if it comes back, have been told its treatable, but know lots of women who have had it year s ago, so who knows. Unless u have been through this journey, no one has a clue what it is like. ! U must start putting all your energy into yourself Fi. well on that note, I’m just having a beer, love to u and Ewan, loads of love Linda xxxx

  6. Hi Fi, well said and so true… Rest and take care of yourself… Loved seeing you on Friday… xxx

  7. You bugger! I was composing a post about this in my head but hadn’t had time or inclination to type it up when your post popped up. But undeterred, I’ve stolen some of your best bits and published and be damned (though I do give you some credit!). https://sloranceblog.wordpress.com/2016/08/15/the-perils-of-looking-good/
    Saw your Facebook update about the magnesium drip etc. I’m exceptionally tired just now and all my leg muscles ache like hell, so I’m wondering if I’ve some sort of deficiency. I’ll get a blood test when I see my consultant on Thu so I’ll get it checked out then. x

  8. The tiredness and achy muscles does sound like a deficiency. Hope they get to bottom of it! I know when my magnesium levels drop I feel super crap!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.