White Flag

There are certain times battling cystic fibrosis (CF) when I need to wave the white flag and strategically surrender for a while to re-group and come back fighting.

There are different layers of suffering and corresponding medication with CF. Outside of the daily medication slog of 40 pills, nebulisers, injections, physiotherapy etc, when my lungs are ravished enough I need to take my treatment to an extra dimension… and that means having two plus weeks of high dose intravenous (IV) antibiotics – what I call having my ‘MOT’. I had to wave my white flag five days ago and begin an IV…

In the past, when I socially lived for the moment with the appetite of a person who’s only been eating salad for a week, I did get very run down and my lungs were often in a horrible state of infection prior to the need for IV treatments. My mucous production and subsequent cough would get so bad that I became part human part cement mixer.

When I wave the white flag to initiate a course of treatment, I always feel like the duracell bunny, but minus a battery or two – I can get by my usual day but everything is at a reduced pace in mind as well as body. Tiredness eats at you and my body feels like it’s in freefall – imagine the way you feel when leading up to a break from work but times it by a 1000.

On the day my IV commences, when I’m driving to the hospital I would think of the film ‘Papillon’ featuring Steve McQueen and the iconic scene when Papillon is put in solitary confinement for trying to escape. When at a low ebb in his cell not helped by a less than balanced diet (cockroaches were his culinary delight), he would look to the Heavens via a small window in his cell and shout “I’m, still here!”

I FELT LIKE THAT, though I’d be shouting those words out of a car window instead of one with bars. I was enduring to survive CF and exceeding my life expectancy through my 20’s, into my 30’s and now at the milestone age of 40.

In my experience, IV antibiotics make such a difference because they help to clear my chest infection as the liquid medicine goes directly into my blood through an IV catheter. IV drugs churn up my mucous so that it can be coughed up more easily.

An IV may require a hospital stay, but can also be done at home, which is the route I prefer – splitting the time up between home in London and my folks’ house in Southampton.

I have calculated that this is my 60th IV session – that’s a lot of holes (and scars) on the inside of my arms! If you did a dot-to-dot with my scars, I reckon you could spell out ‘Intravenous’

I’ve had so many of these that my veins have almost had enough and it takes a lot of effort, blood and swearing to get the lines in these days – that’s even before I start any medication.

I do count myself lucky as my veins have been kinder than most and I have staved off needing a portacath (small medical appliance that is installed beneath the skin).

Always there to remind me

Although there are more horrid medications for CF sufferers, I always explain to the non-CF community that these IV’s are my version of chemotherapy. They stretch me both physically and mentally – it’s extremely gruelling and feels like trench warfare.

Physically the power of the drugs wear me down. I feel lethargic and sapped of energy and spirit. An IV drug treatment can last over two hours (often three times a day) and are done on top of my usual medication regime; which makes for a long day where I go from one treatment to the next in a vicious circle.

There’s always a drama during each and every IV session – going back to blocked and leaking catheters in my teens to carrying my treatments to social engagements while at University. Last year it took the doctors most of the day to get the catheter successfully into the right part of my body. This time the drugs were delivered to the wrong house and my skin has reacted badly to the adhesive plaster covering the point of injection – causing an irritable rash which drove me to distraction.

As with the majority of my antibiotics, IV drugs have caused some horrific side-effects over the years. A snapshot includes fevers, hallucinations, stomach upsets and severe rashes. I once fainted and had to be fetched out of the bathtub by my Aunty Mary who was looking after me at the time.

Mentally, it’s a rollercoaster trying to remain as positive as possible even when things don’t seem to be going well or when my body sends me mixed messages on the effectiveness of the medication.

Psychologically, IV’s are a harsh reminder that CF is very much still calling the shots and affecting my health and fragility. It takes away any spontaneity and makes me feel like the ‘sick boy’ all over again. I find IV’s reign me back in, exclaiming: “Don’t get too comfortable, feel normal or get too ahead of yourself and feel like all those healthy people!”

Generally, patience is a huge virtue when handling CF and my recently diagnosed diabetes but it’s required in bucket loads during an IV session. I need to hold my nerve and stay the course of the medication so that my lungs can reap the full benefit from the drugs. Also, there’s often a lot of waiting around in hospitals for doctor appointments plus patience is needed during the frustrating down time of the treatments themselves. I try to get myself into a ‘Zen’ like state of calm to manage this whole process.

Historically, I’m not always a nice person to be around during IV’s – I’m prone to being grumpy, incoherent and forgetful of the simplest words. Katie and I joke that I once couldn’t remember the term ‘seat belt’ referring to it as a ‘driving strap’. If I forget your name or something I should know when I’m on IV’s, please don’t take it personally but blame it on the drugs!

If you know someone with CF who’s on a course of IV’s, try to be understanding if they are down or complain more than usual – it’s pretty damn awful!

If anyone can manufacture a pill that has the same effect as IV drugs, they would be bought dinner for the rest of their lives by appreciative CF sufferers!

Not alone

I would certainly have struggled dealing with these IV sessions if it were not for the amazing and consistent support from my parents, brothers, Katie and friends who share the burden with me. My mum has particularly gone the extra mile and been involved with all 60 IV’s through thick and thin, blood and gore, tantrums and agony, but also through humour and laughter which is our overriding medicine.

On a positive spin, these sessions have given me time with my family that my normal busy life in London wouldn’t offer me. Once you leave home, these ‘quality’ times are few and far between. Despite the fact that I’m often higher than a kite, I will remember these times with some fondness.

I can’t deny that it’s an almighty faff taking time out from work, sport, family-life and not being able to be there for Katie and Felix. It’s not normal, is always inconvenient and conflicts with work and social commitments. Luckily, I have the support of an understanding employer in The Fifth Business, who grant me this time off with open compassion.

To the end

As well as making a step change in how I view my longevity in this world, I have also matured in my approach to handling these IV courses. When my social life was all important, the IV’s would hold me back and I used to get straight back onto the hockey field and bar as soon as they had finished – usually in the same day! I would often then go hell for leather and burn myself out far too quickly…

But with most things in life, I have found a way that works for me – a more measured and realistic approach where I listen to how my body feels before, during and after the IV course and act accordingly.

Once an IV course is completed, it feels quite euphoric despite being extra tired for a couple of weeks as a result of the debilitating drugs. Only those people who have had to suffer such medication and time away from their normal lives will fully appreciate how it feels to get your life back on track – it’s probably one of the purest highs I ever feel!

By commencing my 60th IV session, I kick-started this whole mental and physical shake-up, but I always try so very hard to keep my eye on the end goal and project myself post treatment – working hard, playing hockey, going for jogs, enjoying a night out with my chums, taking Katie for dinner and playing rough-and-tumble with Felix.

By realising when the time is right to change my treatment, I temporarily wave the white flag so that I can live to fight another day – I may have lost the battle but I’ve not lost the war…

This blog post is dedicated to my mum and dad who have been through so much keeping me well over 40 years AND to my wife, Katie, who looks after our son Felix on her own when I’m away having IV’s.

I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.

Yours cup half full

Tim

Tim Wotton

* Cystic Fibrosis is one of theUK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.

For more information and to find out more view the CF Trust Website

http://www.cftrust.org.uk/

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About Tim Wotton

I live with my lovely wife (Katie) and spirited ten-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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25 Responses to White Flag

  1. Olivia says:

    Ah, bless you Tim. You’re so brave, and I hope you continue to enjoy a full and loving family life with Katie and Felix. My Jeff is still doing fantastic, on 3 rotating nebulized antibiotics instead of just two (Tobramycin, Cayston, and now Ceftazidime) but thankfully the last time he had an IV was a few years back with pneumonia.

    We started the IVF process about a month ago now. I’ve been wondering for some time if Katie could do a guest post because I’d love to hear what it was like for her. We had egg retrieval on Saturday (don’t want to do that again!), got 7 eggs, 6 viable, 2 fertilized by Sunday but we were up to 5 as of yesterday, good odds. So able to advance to blastocyst stage, we go in for transfer tomorrow.

  2. dannyokane says:

    Tim, top man sir, your blogs fill me and my wife, with courage, hope and a sense of I’m not sure how to put this without it sounding like BS, but an inner something, like there is a higher being, (I’m an atheist – thank God!) that gives my daughter Charlotte (CF, Diabetes, and a few more), and my family the strength and belief we all need.

    Take care….keep blogging and laughing

  3. Stewart Jones says:

    Half full and overflowing…. With the love of your family and friends! Keep strong and well!

  4. Debs Knowles says:

    Timmy

    Its Debs here, previously Chrispin!!
    Just read your latest blog. You’re a brilliant writer by the way!
    I’m going to be praying for you during this latest IV session, that when your remarkable courage and humour runs low you will be able to lean on everlasting arms of love.
    Much love

  5. lesley porter says:

    Thankyou Tim,

    You continue to inspire us and help us to understand
    what the future may hold for our daughter.
    You are in our prayers too.

    Lesley

  6. Kylie Merchant says:

    Thank you again for sharing your amazing journey with us…I’m lost for words at what you have to endure, your strength of character and your generous spirit. I watched my bestfriend cope with visits to the hospital where she too had the IV drip and I particularly remember with fondness, sitting with her during one of these many hospital visits in silence, we just sat and watched TV while I brushed her hair for her, she didn’t have the strength to do it for herself or the outing for the day when I took her in a wheel chair with her oxygen and she asked me if I was embarassed…I couldn’t believe my ears, embarassed ??? Far from it, I was proud of her strength, grit and courage and of our friendship…always worrying about others and not herself…I miss my dear friend everyday. I wish you all the happiness in life x

    • Tim Wotton says:

      Dear Kylie,
      Thanks for sharing your story – it sounds like you were a true friend and gave tremendous love and support to your dear chum – trust me when I say that she would have appreciated your warmth more than she could ever convey – gone but never forgotten…
      All the best
      Tim

  7. Donna Sim says:

    Why don’t you get a port? So much easier….I felt like i didn’t want one, took a few years to convince me as at first i saw it as defeat. I was initially offered one of the chest ones around 1994, but being vain I decided i would not like a big scar on my chest. I said i would wait until they invented something else, later in 1997 I got the one in the arm. It’s the only one I’ve had and is still doing strong.

  8. Simon Goff says:

    Fun-loving, competitive fighter with a big heart. That was the Tim I knew at 16 (I have now just passed the 40 mark!). Wow, nothing changes with the flow of time.

  9. Mark and Kath Lawson says:

    Tim,

    Keep on keeping on.

    Best wishes

    Mark and Kath

    • Tim Wotton says:

      Dear Mark and Kath,
      You know more than most what I go through, especially during one of my IV’s. Your kindness at British Gas will never be forgotten.

      All the best
      Tim

  10. Lucie Durey says:

    Hi Tim – Just clicked through a link posted by Kate Langley on FB and read your latest Blog on the ‘White Flag’ which i thought was poetically written and so simple and beautifully honest. I had no idea you suffered from CF and for someone who knows very little about it, your story really opened my eyes and also served to remind me to appreciate the people and things (like health and love) that we know are so special but forget to reflect and wonder upon regularly enough- thank you! I remember when Felix was born (can’t believe that was 4 years ago already!) Look forward to reading more of your postings…

    Love to you and your family, another ex 5th businesser, Lucie. x

    • Tim Wotton says:

      Dear Lucie,
      Bless you for your kind words wrt my story as well as my writing style, and I’m glad you know a bit more about CF now as it’s not that well known or understood by the average person on the highstreet. I hope to change that as I share my story both via this blog and my forthcoming book.
      Felix is awsome and full of life – I wish I could borrow some of his energy! 🙂
      Hope life back in OZ is treating you well…
      Best
      Tim

  11. Sharyn Boswell says:

    Hi Tim,

    I wish I had an ounce of your grit and determination…

    Love, sharyn

  12. dannyokane says:

    Just a quickie Tim, our daughter Charlotte had her port fitted about 6 years ago when she was about 17, she is doing really well with it, and now in her final year of med school. Worth thinking about maybe?

    Anyways you take care……..

  13. Mike says:

    Well I am a double lung transplant recipient and usually have about 3 iv doses a year.
    iVs are a way of life and you feel that you need them sometimes. I had my transplant about 16 years ago and am still going well apart from the odd infection.
    I just wish a lot more people could see your comments, I sometimes wish that the people I work with and am around could see the struggle that we all have to put up with, Its not just about taking lots of tablets there is a lot more to it.
    Keep up the good work,
    Mike.

    • Tim Wotton says:

      Hi Mike,
      I so appreciate your comments and I’m glad my IV post resonated with you so much. Feel free to pass it onto others that need some education with what we have to endure (outside of the pills and nebi’s that they might associate CF with). I’m also glad to hear that you are going strong 16 years after a transplant – my utmost admiration goes to you.
      All the very best
      Tim

  14. Philippa says:

    “Psychologically, IV’s are a harsh reminder that CF is very much still calling the shots and affecting my health and fragility. It takes away any spontaneity and makes me feel like the ‘sick boy’ all over again. I find IV’s reign me back in, exclaiming: “Don’t get too comfortable, feel normal or get too ahead of yourself and feel like all those healthy people!”

    …What can I say. I read the above paragraph and I had to stop for a moment. I very recently described my IV line to someone as a sort of physical manifestation of my CF, for me and for others around me, and that it changed me so much – from my normal extrovert, bubbly self to a quiet, subdued and thought possessed ‘sick’ version of me. I was taken aback, yet comforted also, to see someone else describe it in such an indentical manner.

    Tomorrow I head off to start IV treatment and another 2 weeks of absolute drowsiness and lethargy for the 2nd time this year, but I’m intent on not letting it ruin my charcter this time.

    I am only 26, so you hitting 40 is a true inspiration to me. Glad to hear you’re fit and well and enjoying having life with your beautiful family 🙂

    All the best,

    Philippa

    • Philippa says:

      enjoying life**…!

    • Tim Wotton says:

      Dear Philippa,
      Thanks so much for replying and I’m glad that my IV post resonated with you so much. IV’s are a tough time for us the patients and all our close friends and family. Good luck with your current course and keeping calm when your body is screaming at you with negative thoughts about how the drugs are making you feel.
      All the best
      Tim

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