(written 14th May 2014).
June 2014 will be seven and a half years on from my laryngectomy – the surgical removal of my voice box owing to the laryngeal cancer, carcinoma sarcoma. It will also be five years on from a second cancer in my neck with all the radiotherapy that entailed. I cringe at the thought of all that process even now, but I am still here in Redruth, Cornwall, and I am both physically and spiritually alive.
Here I am with dear Brenda at Redruth Baptist Church on our 43rd wedding anniversary, November 2013. Notice the Atos Provox oval optiderm base for sensitive skin and their Micron cassette that I wear in crowded places like church, hospital, or on the bus.
“The heavens declare the glory of God; the skies proclaim the work of his hands. Day after day they pour forth speech; night after night they display knowledge. There is no speech or language where their voice is not heard. Their voice goes out to the ends of the world”. Psalm 19:1-4.
My voice is not the one God gave me at my birth, but it is the one He has given me for now. I hope I will “voice” every day for God’s glory and purpose.
We are well used to the routine valve, stoma and skin cleaning at the start of every day. I also nebulise with a saline solution. I find that allowing for shower, shave and a small breakfast, plus all of the above, it will take me a whole 2 hours from getting out of bed to be ready to leave home when I need to be out somewhere. The cleaning cannot be rushed. It is also detrimental to skip it and I will pay for it later in the day with more coughing than necessary if I do. Patiently planning the time first thing pays dividends in the long run.
I redeem some of that time by reading during the 20-30 minute nebulise. It is actually a good discipline for me. With careful thought I find this reading helps me with my devotion to God, writing preparation for Sudan and South Sudan, plus the church group Bible study we lead fortnightly in our home for 13-18 people.
At home (and at my daughter’s home, God bless her) I use an angle poise light with a spotlight bulb, one or two mirrors – one a magnifier, two jars of cleansing liquid – one with boiled water, the other the same plus a little Milton sterilising solution. I don’t travel much but when I do we have devised our own “travel kit” to take with us.
Tissues, the valve brush, the tweezers, the pipette, sachets of adhesive remover, all go without saying, along with a “green zip bag” full of spare parts – HME cassettes, adhesive base plates, wipes, saliva spray, nebuliser, saline capsules, shower guard etc.
The “extras” we have for travelling and staying in a Travelodge (or equivalent), where we don’t know what the light situation is going to be, are an old camera tripod and a battery operated quartz halogen torch that can be turned into a pinpoint spotlight. Spare batteries are useful too, of course.
Sometimes the tripod can stand on the dressing table, or else on the floor, wherever I can sit behind it facing as much light as possible to see the reflected image of my stoma. The torchlight enhances my view and enables me to clean well.
It has taken me six to seven years to settle on which plates and cassettes are best for me. I have not experimented with every new item in the catalogue, opting to observe the maxim: “If it isn’t broken, why fix it?” I generally use Atos Provox Optiderm base plates, Extra-moist HME cassettes for being at home, Extra-flow HME cassettes if I am walking to and from the shops, and the Micron in crowded places as mentioned above. My Speech Language Therapists gave me good advice on these. Our Royal Cornwall Hospital’s policy is to change the voicing valve every six months whether it needs it or not. This suits me fine and I feel it gives me a medical check-up at the same time. The professionals have a wider experience than I do and may see things I don’t.
The ongoing toughest thing for me has been balancing the demands of my life and the constraints of living as a laryngectomee (in my case along with epilepsy, narcolepsy, diabetes and prostatic hyperplasia – together with the passing of years!). Every day is a question of learning to balance, or to hold in tension, what I want to do, what I need to do and what I can physically do. Because I firmly believe in the sovereignty of God I try to accept the limits He has put into my life. The ancient character Job learned during his tragic lifetime to “accept good and trouble from the Lord”, Job 2:10. I want to do the same but it is not easy. “My soul will boast in the Lord; let the afflicted hear and rejoice”, Psalm 34:2.
I take opiate painkillers all the time with some extras to top up with on bad breakthrough pain days. These all make me sleepy and result in hours, even days, in bed asleep. Afterwards I am frustrated as some things I need to do and want to do have not been done. “I have (not yet) learned the secret of being content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I (am learning) the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength”, (brackets mine), Philippians 4:11-13.
I suffer constant dull pain the left side of my face, my ear, my throat (and “you are often a pain in the neck”, do I hear someone say?) It makes sleeping difficult. I also get severe neck cramps on eating, drinking hot or cold drinks, some pillow depths and various angles of my head. I cough a lot and as well as being messy my head spins and I occasionally collapse on to the floor. I have learned that a little tickle in my throat means it is time to change the cassette I am wearing.
“I have no peace, no quietness; I have no rest, but only turmoil”. Job 3:26.
“Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Saviour and my God”. Psalm 42:11.
Thank you for letting me share something of my heart with you today. I pray God will encourage you to seek His answers to questions in your life.