Klaske van Sluis

Life after total laryngectomy 137 Many were relieved to meet someone who had undergone the surgery, and could still speak, eat and function well. This provided a positive, hopeful image of life after total laryngectomy. Three respondents stated that this meeting convinced them to undergo the procedure. However, some respondents indicated that, in hindsight, the laryngectomized patient visitor had provided an overly positive image of the surgery’s outcome and that they neglected to discuss ongoing dif- ficulties. Most emphasized the importance of meeting an individual who had already undergone the surgery to obtain an understanding of the procedure’s outcomes (e.g. voice, functioning). During their stay in the hospital and the first period at home, respondents experienced challenges in adjusting to their altered body. After the surgery, when recovering on the hospital’s ward, they were not able to speak. To com- pensate, respondents used mouthing, gestures, and writing to communicate. They indicated that being unable to speak can be severely distressing because it interferes with the capacity to communicate one’s concerns clearly and in real time. Before and during standard medical procedures (e.g. suctioning mu- cus out of a tracheostoma), participants experienced little opportunity to ask questions, and their voiceless expressions of discomfort were brushed aside. Learning to speak again was often a physical and emotional challenge. All re- spondents disliked the sound of their new voice; they described their voices as “unfeminine”, “unpleasant,” “gruff”, “scratchy” or “grumpy”. Functional is- sues respondents mention included reduced physical fitness, the need for use of medical aids, swallowing difficulties, and managing mucus discharge from the tracheostoma. 8.4.2 Returning to everyday activities The second theme captures respondents’ experiences as they tried to return to everyday activities after recovering sufficiently. Their re-integration into ev- eryday life took place in three main domains: social life, hobbies, and (care) work. Social life Respondents described the impact of total laryngectomy on the relationship with their partner. Married respondents mostly experienced their husband as helpful and understanding, although they described becoming more dependent on their spouse, as the total laryngectomy reduced their ability to fulfil care activities such as cooking and looking after (grand)children. This led to shifts in the relationship’s give-and-take balance, alterations in familiar role patterns, and changes in expectations between laryngectomee and partner: I came home quite disabled, (. . . ) I couldn’t speak well [and experi- enced] much coughing. [So, my husband] really thought: ‘my God, I‘m stuck with an old woman’. (. . . ) At one point I thought: I am