I said I’d come back and let you know how my head is faring. Sorry to keep you waiting. I’ve been busy trying to keep on, keeping on!

As you know, I had a fairly easy post-operative phase before the internal splinting was taken out of my head last week. I mistakenly thought that  I was over the worst. How wrong I was. My head felt very raw and painful once the splints came out and especially the side of the nasal septum where the tissue was taken for the graft.  I was also struggling with the return of the chest infection I’d had in the week leading up to surgery. As each day passed, my head got progressively sorer and a horrible facial neuralgia developed. I knew something wasn’t right as I was reaching for pain relief on an increasing (instead of a decreasing) basis so I requested an appointment with the referring surgeon.

I was seen in the hospital two days ago and the surgeon had a good look around the inside of my head. He spotted the problem within seconds. Since having the splints removed a week earlier, my head had been seeping blood internally and despite daily wash-outs, this crud had congealed causing pressure on surrounding structures. He spent about 30 minutes working on my head with surgical instruments before hoovering up all the debris. A final inspection brought the very good news that the graft is healing well with no sign of rejection. I left the hospital with a definite bounce in my step and I’ve not looked back since. Next stop is Nottingham in a month’s time for what I hope will be, a final review.

You may be wondering what the title of this blog post is about. Some time ago, I received a comment on my blog from a new visitor who was delighted to find my personal story. You see Alex has been on an uncannily similar journey to my own with years of fighting infection in her forehead, multiple surgeries, hospital-acquired infections, osteomyelitis and long-term IV antibiotic treatment. She too lives with a hidden disability except for the large dent in her forehead. Alex recently started her own blog called Bugs Drugs and Rock n Roll, to document her journey. It was Alex who taught me about KOKO. When you live with a chronic condition, you soon learn how to keep on, keeping on.

17 Responses to KOKO

  1. Grannymar says:

    I am pleased you found Alex since your journeys seem so very similar, and you have a special understanding of each others road.

  2. magnumlady says:

    You poor thing. I hope you are on the mend really soon. Hi to Alex, what a great outlook on life.

  3. Annb says:

    Crud free and fighting back – that’s the Steph Spirit in a nutshell!

  4. Alexleej says:

    Thank you for such lovely words. I was all choked up, I was. It is wonderful to have someone else who really understands as even those who are closest to us still don’t understand fully. It is truely wonderful.

  5. Geri Atric says:

    Wow – you had the inside of your head hoovered…?!! *Gulp* – But how wonderful that the graft has taken and is healing well! Congratulations Steph!!

    And now just that chest infection to sort out and hopefully this will be the start of a wonderful sweet smelling (and tasting) summer for you!

    (Suffering from (lifelong)chronic bronchectasis and sinus problems as I do, I can appreciate your comment about learning to learn to cope(!) It can be hard – and even scary (since a violent allergic reaction last Sept. to yet another and apparantly the last penicillen type that can help me) but still, its blogs like your own that help lift the spirits and renew courage, when most needed).

    Keep bouncing Steph!

  6. Bendy Girl says:

    Really glad to hear things are finally on the up, long may it last! I’m off to check out Alex’s blog now, thanks for the recommendation. BG Xx

  7. Nancy says:


    Glad to hear that you are feeling much better now that the Doctor has “Spring Cleaned” the inside of your head.

    Now how many of us can make that statement?

    It is so nice to have you back in good spirits again.

    Take care…Nancy

  8. Lily says:

    Glad to hear things are improving. I like the phrase ‘keep on keeping on’ and know someone who needs its encouragement.

    Do you watch the TV programme House? Tommy tells me that a recent episode involved House treating a blogger. Must watch it.

  9. Steph says:

    Grannymar – Too true. Even though I wouldn’t wish my journey on another person, it’s a huge joy to find someone else who’s been down a similar path.

    magnumlady – I’m doing good, thanks. The trick is to keep doing, doing good 😉

    Annb – I like it! I’ll have you know, the words ‘crud’ and ‘hoovering’ both belong in my surgeon’s vocabulary. I’m blaming him!

    Alex – You were the clever one to find me! I agree with what you say about those closest to us. My family have had to learn to tune into the Biopsy Report when they want some info on my head 😆

    Geri Atric – My chest thankfully, has sorted itself out without recourse to further antibiotics. I was always warned that the chronic sinus infections would eventually affect my chest and they did. I’m now asthmatic but well-controlled by steroid inhalers.

    Don’t worry too much about antibiotic sensitivity. I’ve had many microbiologists scratch their heads over how to treat my infections and even when I was methicillin resistant, they always (thankfully) managed to find a combination of antibiotics that worked. Bugs constantly mutate to try to overcome drugs but your resistance also constantly changes so that what didn’t work for one infection, sometimes will work for another. These days, I leave the worrying to the microbiologists.

    Bendy Girl – Thank you. I’m enjoying it while it lasts!

    I hope you do visit ‘Bugs Drugs and Rock n’ Roll’ as you’re very well-placed to advise Alex on how best to become a Benefit Scrounging Scum 😉

    Nancy – I like that term ‘Spring cleaning’. I shall enjoy using it next time I visit the hospital (see reply above to Annb) 😀

    I’ve been instructed to come back for further ‘Spring cleaning’ if the ‘crud’ builds up again before my next trip to Notts.

    I once had a surgeon who referred to his operating day as ‘chopping’…eww!

    Lily – I like KOKO too. It really sums up life with a chronic condition.

    I don’t watch House although I’ve often seen medical students discussing it on their blogs. Wouldn’t it be great if we all had the time to watch these Soaps? 😉

  10. Baino says:

    Oh steph I’m so late catching up. Seriously, this has to be the end of all this for you? I can’t imagine being fully conscious and having someone poking up my nose and vacuuming my skull it sounds absolutely awful and a lesser person would have thrown in the towel by now. Big hugs and all fingers crossed that this is the last of it.

  11. Steph says:

    Baino – Cheers! I regard these sessions in the ‘treatment room’ as no worse than a trip to the dentist. My regular surgeon could navigate his way around the inside of my skull with his eyes closed, as he’s been there so often. We usually enjoy good banter while the work is in progress but I make sure to keep quiet at crucial moments!

    It would lovely to think that I’ve finally reached the end of this journey but only time will tell on that one. I’ve learnt not to raise my hopes too high in case of another fall.

  12. achelois says:

    I wondered if you were having a rough time because of the silence! I would love to think that finally this journey will soon be over as you say too. I am in the land of deafness and infection – they tell me its not my ears – so my brain must have exploded then! I just don’t know how you have endured all this steph – must be lack of choice I guess. Thinking of you.

    @ geri atric above. My father has just been diagnosed with this condition you mention – bronchectasis. An answer finally to his ill health.

  13. Steph says:

    achelois – So sorry to hear you’re in the wars. I hope you get a diagnosis from the neurologist because as the saying goes “better the devil you know than the devil you don’t”!

    You’re right about me going quiet when I’m not well. I think I have a love/hate relationship with this blog. When things are going according to plan, I’m happy to share but when a set-back occurs outside my control, I sometimes prefer to remain quiet until I can see a way forward again.

  14. Jenny says:

    delighted to hear that things are on the up and that nottingham is your next port of call!
    i think that KOKO was nearly penned in your likeness, i don’t think i have ever encountered a person as positive and driven as you Steph, you take KOKO to a new level,
    here is hoping that having so amny fans and ardent supporters help you contiune keeping on and seeing your way forward.

  15. Steph says:

    Jenny – Thank you 🙂

    I just do what seems normal to me and it’s a real bonus to have the support received on this blog.

  16. Lily says:

    A suitable Easter egg for Steph 🙂


  17. Steph says:

    Lily – Good one! 😀

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