(written 12th April 2016).
Yesterday, 11th April 2016, I had a new voicing valve fitted in my throat fistula. Emma, my speech therapist, did it. When we first started doing this, nearly 10 years ago, it was quite a battle. Emma, or one of the other team members, would kneel in between my legs and look up into my throat stoma. The in-place valve would be removed and a dilator inserted to keep the hole from closing over. It would be inserted a little more than the valve to make the hole large enough for the valve flanges to go in through the skin. When the hole seemed large enough the dilator was removed and the pristine new valve inserted for the instantly contracting hole to firmly grab. The grip has to be good enough to stop food and drink from passing through into the trachea and the lungs, with considerable coughing on the way.
“A battle” was the correct description, “a situation in which someone is
trying very hard to deal with something difficult”.[1] Perhaps the speech therapists were dealing with at least three “difficult” things?
1. The closing fistula
2. The poor visibility and awkward working area inside me
3. Me, the patient, liable to cough when anything touched a ‘wrong’ place
Those battles lasted up to an hour, although some were quicker.
Yesterday, the whole procedure took 3 minutes! The placed valve was whipped out and the new one slotted in before anyone could say anything. (Of course, I could not say anything anyway with no voicing valve, but Emma and my wife Brenda could have!). A powered-raising couch, an adjustable spotlight on a stand, plus no need for any dilator, appear to make the difference. My experience as the patient possibly helps a bit too. In the early months valves were changed quite frequently, varying between 1 and 3 months. But now I have settled into Royal Cornwall Hospital’s offered programme of a valve change every 6 months. My next change is already in my diary for 11th October. I usually email in the week before and am given a slot at the Monday drop-in clinic for this purpose. I feel God blesses me with the thoroughly professional team who have looked after me since my laryngectomy (17th November 2006) and a second neck cancer (6th April 2009).
Nebulising
Nine years and five months on I cough a lot less than I did, but when I do cough it seems to be more violently. I am really shaken up by coughing and immediately have to sit quietly for half an hour. I believe that nebulising helps me to keep healthy as the salty mist finds its way around the reconfigured passages.
Perhaps I must define ‘to nebulise’ before going further. On my computer ‘dictionary.com’ gives two meanings and I want to make sure you get the correct one:
1. “to reduce to a fine spray, atomize”
2. “to become vague, indistinct, or nebulous”
I sit in my lounge with my feet up. I read my Bible or a good commentary on the verses. And for 20-30 minutes I breathe in a light saline mist through my stoma and into my trachea. For me, it helps facilitate part of the Christian ‘Quiet time’ discipline. It simply is a Godsend to me. I try to cleanse my spirit as well as my lungs.
It is not often I can manage two things at once, but this is such a time.
It all takes time
Brenda and I know now that it takes me two hours from getting up to be ready for going out. If I have a 9 ‘o’clock appointment with my diabetic nurses, as I do tomorrow at the local surgery, then I need to be up at 6.30am. My time is then invested showering, breakfasting, feeding the wild birds, nebulising, stoma and valve cleaning, before repeating the massage and exercise regime I have been assigned by physiotherapists:
· for moving oedema from under my chin to drain properly down the side of the neck, across the collar area and into the armpit, for deliberate occluding of the hands free speaking device and hopefully avoiding the oedema and baggy skin blocking it unintentionally
· for keeping the neck and throat supple and pain free , tilting and rotating the head slowly and carefully
To perform everything properly is time consuming! BUT I have found the days go better when I start them off properly with all of these things. When I am tempted to skip some or all I end up paying for it as the day progresses, especially when I near the end of the day.
Accepting my limits
What I have just written leads well into this section. I have found that the effort of speaking takes a lot out of me physically. With Brenda I lead a fortnightly Home Group from our church. We host it, with Brenda doing most of the practical side. She leads a prayer time too. Then I lead about an hour of Bible discussion as we seek to apply God’s word to our lives today. Usually I have to sleep for a couple of hours Thursday afternoons!
The same is true just talking one on one with people. I love it and do not want it to stop, but I have to recognise that I will be weak afterwards – weak physically, not wanting to speak much (poor Brenda), and even weak mentally preferring to zonk out to watching sport or a detective programme on TV rather than doing anything intelligent.
This all means I must prioritise very carefully what I do.
Still writing part-time for Sudan and South Sudan
Living as a laryngectomee has its challenges to be sure. In His grace, God has nevertheless enabled me in the last 15 months to edit, write, fund-raise and publish another book to help Christian believers in Sudan and South Sudan. “My Life Alongside God’s Word” volume three was printed in Juba, South Sudan in September 2015. The 5,000 copies are being used and distributed from there by the Fellowship of Christian University Students (FOCUS). A whole variety of churches and colleges have copies including the Episcopal Church, Sudanese Church of Christ, Bishop Gwynne College, Gideon Theological College and Evangelical Church College SS. Ten writers have chapters published in the book as well as Brenda and me. It is an honour for me to work with these colleagues in offering biblical teaching and application to our brothers and sisters in those two troubled countries. If you want to read a copy it is published elsewhere on this website, accessible from one of the two Homepages.
A new opportunity may be opening to me as my home church, St. Illogan Church of England, have asked me to join the preaching team for occasional ministry. I gave a ten-minute sermon on “the cross” at Redruth Baptist on Good Friday just past and my voice stood up well, with people being blessed through it. God does have strange ways of working! We can never out guess God. Whatever He does is always the best way forward in the end. We will see it clearly one day, even if it is a puzzle for now.
Thanks again for letting me share my life with you. May God also bless you in your daily walk. Keep open communication channels all the time.
[1] Macmillan School Dictionary (Macmillan Education: Oxford) 2004.