Day 25 – ‘Faith,drugs and rock & roll’

I want to talk to you about chemotherapy. I can put a positive spin on most things (if you have been religiously following my blog you will have picked that up) but chemo, I’m struggling.

Let’s be clear, I am not saying to would-be recipients ‘Don’t do it’, that decision of ‘benefits vs risk’ will already be evaluated by your oncologist, it is not my place to sway anybody on their decision. Neither am i questioning the clinical efficacy of the treatment, we are all individuals, and everybody’s clinical outcome will be particular to them.

I simply want to talk about my experience and how it has moulded my feelings and concerns for further treatment.

The difficulty with chemo (unlike surgery) is that the further in you get the worse you feel. in simple terms ‘You have surgery, you recover, you have chemo, you become ill due to the chemo’.

I cannot speak for all cancers and all chemotherapy treatments, but my experience for bowel cancer was that this was certainly the case.

My particular chemotherapy for my particular bowel cancer was :

Oxaliplatin infusion with Capacitabin tablets. This administered on a 3 week cycle (2 week on and one week off)

Whilst the clinical teams fully appraise you of the side effects of the chemotherapy both physical and mental, nothing can you prepare you for the full impact of the treatment.


• Didn’t lose my hair (whoop whoop)

• Minimal vomiting

• Minimal nausea (controlled via medication)

• Did not experience Palmer planter syndrome (inflammation and redness of feet and hands)


• Extreme fatigue (I mean after cycle 6 could hardly walk up the stairs without needing a sleep)

• Permanent metallic taste in mouth

• Mouth ulcers

• Loss of taste

• All food tasting like cardboard

• Loss of interest in food *Il come back to that one…

• Cravings for some foods (Fish fingers , steak and grits for breakfast)

• Peripheral neuropathy (Damage to nerve endings in fingers and feet resulting in no feeling in either. This still persists to this day in my feet)

• Inability to drink or touch cold or metallic things (water, taps, cutlery, tiles and handles) without getting ‘electric shocks’

• Chemo brain – degradation of cognitive ability, affecting concentration, judgment etc.

• Mood swings

• Night sweats

• Inability to control body temperature

• Diarrhoea

2016 – ‘Cycle 6, the cats instinctively new when I wasn’t well’

I cant polish this one up, in fact writing this blog has been the toughest yet. Just writing up the side effects has caused me to cry uncontrollably. I have left this, composed myself and come back to it an hour later.

For me this is still very raw, and compounded by the grief of losing my sister to bowel cancer, the sense of guilt for still being alive and not being able to save her. The sorrow for the other people that I had chemo with who sadly did not make it. And the pure fear of knowing that I will have to go through all this again.

I said after last time “I can’t do this again, I would rather just die”, but I will be doing it all again.

Please God give me the strength and faith to get through this, I just want to run and hide and pretend it isn’t happening but I can’t.

Sorry guys this is dark., but this is how it is today. This is how cancer plays with you.

You can have today you little shit but I am taking back tomorrow, and the next day…


Day 24 – ‘A grand day out’


Day 27 – ‘From peaky to Peak Tor’


  1. Steve Boot

    wow, a dark day and difficult to know what to say other than we (and so many others) are sending the most positive vibes to support you. You are truly inspirational; get out there and kick the little shit’s butt!!!

  2. Rosemary and Francis Polglase

    Following your daily blog Simon…you are being very brave and honest…and speaking from experience it’s just how it feels. I’ve been one of the fortunate ones..I’ve looked thru the dark tunnel and come out the other side…may your strength and determination along with the wonderful support from Ali and your family help you in the weeks ahead. You will do this I know ..lots of love xx

  3. Cindy

    Simon, I can’t begin to imagine I truly understand how this is for you and also for Ali. I like to think my experiences in healthcare give me a good idea but know this cannot possibly be the case. What I will say is, that I know it is normal to have a Black day. But tomorrow, get you arse back up and out there and do something you enjoy. I’m a good nag if you need one. C x

  4. Pauline williams

    Oh simon, my heart cries for you and your journey, a weaker person would have given up long ago but your grit, determination and sheer bloodymindedness will see you through. That and having Mrs, c beside you. Xxxx

  5. Karen Johnson

    Mate, I totally get where you’re coming from as I had 75% of the same symptoms as you had and like you still suffer the effects with pains, fatigue,moood swings and chemo brain. Knowing what you are going to be embarking upon again is naturally going to affect you, so do not apologise for how you feel.
    Those who have tread the same path would feel the same.
    You’re one in a million x

  6. Gill Hubbert

    I get where you are coming from Simon, but for those of us for whom surgery is not an option, chemo can keep us going. I would have been dead within 3 months without it. I am now having fortnightly chemo (like you I have bowel cancer) and am approaching 20 months and 34 doses!

    I’m having FOLFIRI which is irinotecan and 55fu. Side effects I get are hair loss, fatigue, dry skin causing cuts to open up on fingers, taste changes or no taste and by far the worst is the Mucousitis (far more than just a sore mouth) and ulcers on the tongue and mouth.

    However, the alternative is worse!

    Loving your posts and honesty and hoping for a better day tomorrow for you .

    Gill x

  7. Alison John

    Hi Simon. You are one tough cookie but all tough cookies have their really bad days. I think your blog is an amazing insight into how you have dealt with the disease, the op and the impact it has on you mentally. For all your friends and family, I’m sure this has helped them feel closer to you when you, and they need it. I’m so pleased the surgeons didn’t remove your sense of humour – make sure you hang on to that. Remember, you are feeling at your worst now and it will get better. Hugs Alison (Yellow)

  8. Tracey HoneyC

    I cried reading this part of your blog today and there’s not much I can say as I’d love to take all this away for you Simon as you are such a lovely guy – onwards and upwards darling – you can do this and we are all sending you positive vibes giving you the strength and determination to kick this cancer once and for all xxx everyone is behind you and you can do this xxxxx 😘😘😘

  9. You are, quite simply, inspirational, Mr Cowls…

    There is immeasurable love and strength surrounding you through every step of this journey.

    Bite down on a jelly baby and keep fighting 🙂 xx

  10. Mark Bullard

    Simon, I cannot possibly imagine what you are going. As you know I am praying for you and Alison. There will be days when God feels far away, we cannot expect him to be with us all the time, but he is always watching us. We have to have tough days to enjoy the good ones of which there are many more. Be strong and keep praying yourself. He and we love you.

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