QUALITY OF LIFE AFTER TOTAL GLOSSO-LARYNGECTOMY

The ar/iete explores fhe quality aflife a/two partidpams who had undergone 10101 glosso-foIJ'f1geclomy as rrearmellf!or advanced longue base cancer. Semi~st"lIcfllred interviews were condl/cted and qUill/iollS relating to fhe effects of treatment 011 physical, jill/eriona/, social and psychological well-being were asked. Thematic analysis of the illlerviews was done 10 determine recurring themes in the answers a/the participants. Thejindings showed thaI totaf glossa-laryngectomy has a significant impact on quality of life. A good quality oflife can be maillfaincd in a pOlient who has an extensive support strllClllre and can achieve illtelligible oral communication. Pre-operative counselling by a mulli-disciplinary team is important for a permn to make an illformed decision regarding surgelY for head and neck cancer. Shared decision making need5 10 be addressed in tI,e South African service delivery COII/exl.


INTRODUCTION
In 1947 the World Health Organisation's definition of health changed from "absence of disease and infinnity" to "a state of physical, mcntal and social well-being" (World Health Organisation, 1997).This definition emphasises the value of preserving physical, social and mental health.Quality of life for head and neck cancer patients has become a much debated topic and a crucial area of research in the last two decades (Major,  Bumpous, Flynn & Schill, 2001; Petruson, Silander &  Hammerlid, 2003).The reason for this interest in quality of life of a person who has head and neck cancer is that treatment of this type of cancer may be curative, but may also have a dramatic effect on many aspects of life for such a person.The person who receives the diagnosis of head and neck cancer has to make an infonned decision regarding treatment.The specchlanguage pathologist will in many instances be an important resource for infonnation regarding the consequences of treatment and therefore needs to be infonned of the possible effect of surgery for head and neck cancer on quality of life.
Surgical treatment for advanced head and neck cancer often entails total glossectomy and total glosso-laryngectomy (Harrison, Ferlito, Shaka, Bradley, Genden & Rinaldo, 2003).Tl tumours (2cm or less in greatest dimension) and T2 tumours (more than 2cm but not more than 4cm in greatest dimension) can be treated with a single modality, for example.surgery 0'radiotherapy.T3 tumours (more than 4cm in greatest dimension) and T4 tumours (extensive tumour infiltrating adjacent structures), however, may require combined treatment such as surgery followed by radiotherapy or chemoradiation (Shah, 1996;Harrison et al., 2003).When surgery is the treatment modality of choice, total glossectomy may be perfonned.A laryngectomy may also be perfomlcd concomitant with total glossectomy to prevent aspiration of liquids and food that may follow after total glosseetomy (Davidson, Brown & Gullane,  1993).In cxtensive tumours where the valleculae and/or larynx arc infiltrated, total laryngectomy has to be perfonned together with the glossectomy to obtain clear surgical margins.This operation is known as a IOtal glosso-Iaryngectomy.
Although surgery for base of the tongue cancer is often life saving, this type of surgery may lead to various problcms post-operatively, thereby affecting the patient's quality of lifc.Despite advanced reconstruction techniques and methods of rehabilitation, total glossectomy patients are still faced with deficits in eating, speaking, breathing, shoulder movement and also defonned physical appearance (Ruhl, Gleich & Gluckman,  1997; Vickery, Latchford, 1•lewison, Bellew & Feber, 2003).If a total laryngectomy is pcrfom1ed too, the person will nm only lose the tongue, but also the ability to produce voice.Total glossectomy and total glosso-Iaryngectomy may impact on physical well-being, social well-being, psychological wcllbeing and functional status (Chen, Frankowski, Bishop-Leone, Hebcrt, Leyk, Lewin & Goepfert, 2001; Morton, 2003).
The tenn heallh rela/ed qualily of life (HRQoL) is frequently used to focus on the clinical effects of a disease and its treatmelll.This concept highlights those aspects of life that are affected by healthcare interventions (fayers & Machin.2000;  Ferlito, Rogers, Shaha, Bradley & Rinaldo, 2003).The exact meaning of the tenn HRQoL has not been adequately defined and according to Fayers and Machin (2000) the aspects that the teml encompasses may vary from study to study.The teml qualily of life refers to a broader scope of aspects than pure clinical effects as encompassed in I-IRQoL.Quality of life has been described as a broad concept thai applies to a person•s general well-being and life-satisfaction (Walter & Shannon,  1990).According to Morton (2003) quality of life relates to a range of physical and psychological parameters that describe an individual's ability to function and derive satisfaction from life.To make sense of the many aspects of quality of life, some main components of quality of life has been suggested.
According to Morton (2003) the components of quality of life can be divided into four domains, namely physical functioning, social interaction, psychological state and somatic sensation.Fayers and Machin (2000) state that general health, physical functioning, physical symplOms.emotional functioning, cognitive functioning, role functioning.social well-being and functioning, sexual functioning and existential issues are components of quality of life.Five broad domains of HRQoL are identified by Gift and Atchison (1995) and these arc: op-portunilylresilienee, health perception.functional status.impairments/disease and duration of life.Fang. Tsai. Chien, Chiu. Wang, Chen and Iisiung (2005) explain that qllality of life has two fundamental premises.First, it is a Illulti(timensional survcy incorporating physical.funclionaL social.emotional and psychological domains.Second, it is subjectivc and must be sdfreportcd according to the patient's own experience.These conccptualisations of quality of life (or HRQoL) encomp<lss the three dimensions specilied by the lC1DH-2 classification ofthc consequences of hcalth conditions.These dimensions arc: The Body dimension whieh "comprises two classifications, one for functions of body systems.and one for the body structure": The Activities dimension which includes ..the complete range of activities performl.'dby the individual": And the Participation dimension which "classilil.'s areas of lik in which an individual is involved.has access to.a11d/or for which there an..' societal opportunities or barriers" (WHO, 2007 p. I).
Many self-completion questionnaires for assessing quality of life ofhea<t and nl.'ck cancer palients arc available lFeriito et aI., 20t)J).ESlablishl.'d and wcll-knowll instrumcnts for quality of life asseSSIll..:nt in head and neck cancer pHticnts include the tollowing: I:/IIK/iollill The G('//crolll<.!olill QueslilJl/lwil"(, (G/lQj (Fcrlito et al.. 2003).The majority or qtwlity of life questionnaires inclu(k a global quality of lifc measuremcnt as well as fonts nn disease-and treatment specilic outcomes and psyehosllci31 issues.Areas of quality of life 1h;il arc usually assessed by quality of life instruments for paticnts with h\..'ad and neck cancer.indudc physical-.function<ll-, soci<'ll-, and cmotional-or psychological well being (Pretorius. 2004).Thesc dimcnsions arc also us..:d in the current study.Thus a modI..'! Ih:lI \..'lI('ompasses all levels of functioning and disability (WilD.2007) as determinants of quality of life is adopted in this stU(ty. Patients with head and neck cancer face 1Jl<'lny consequences of til is disease and its treatment.First of all there is till: fear of dcath and (kaling with the knowledge of having a lifethreatening discase (Vickery et a1.. 2003).Ilead and n..:ck cancer palients have many of the same risk fnctors tor suicide as patients with othcr forms of cnncer.It has b('en well documented that patients with a diagnosis of cancer ar..: at IIlcreased risk of cOlllmitting suicid\..' (Henderson & Robert.)l)97).Surgery Illny rcsult in visibk and extensive facial and neck disfigurement.Facial (tisligurement is {)Ill' of the most potentially distressing aspccts of head and l]l'ek cancer because of the vital importance of thc lilcial region to self-concept.interpersonal rc1:llionships and con1l11llllication (K:ltz.Irish, Devins.Rodin & Gullane, 2003).Katz et al. (2003) found thm head and neck cancer patients with grcater l(lei,,1 distigurement werc more depressed Ihan patients with kss f<lci:ll disliguremcnt.Similarly.Gamba, Romano.Grosso.Tamburini, Cantu, Molinari and V~'ntafrida (1992) found a signdicantly higher tmp<lct in hcad and ncck cancer patients with extensive disfigurcment versus head and neck cancer patients with minor distigur~'ll1ent with regard to changed self-image.a worsened relationship with a partner.reduced sexuality, and increased social isolatioll, Functionally.swallowing.speech and the ability to work Ill:ly be .. nrctcd.One of the m:lin factors that influence the percel)tion of quality of life of head and neck cancer patients, is their ability 10 eat and swallow normally (Kendall & Leonard, 1999: Ilut1tln & Williams, 2001).In almost all cultures eating is a social activity and patients who arc 110t able to eat Ilornmlly 1Jlay withdraw from these 'letivities, Morton (2003) also statcd that life satisfaction scores for head and neck eanct'r pati\..'l1ts \\'~'re related to pain.dysphagia and speech ditliculty, Prolonged disability and the cost of tremment threaten the socio-economic stnbility of patients and their rami lies and patients fi::ar that they may become a social and linancial burden (Vickcry et aI., 2003).The efli::cts or surgcry.radiotherapy and chemothernpy can lead to limitation of social activitics, a dclayed r..:turn to work and feelings of isolation (Vickery et a1.. 2003).Quality of life in head and neck CatKer patients will thus encompass many parameters such as survival.pain, aesthetics.functional changes.job changes and social and exisll'nti:tl issues.
Quality of lili: has becll cxplorcd ill scvl..'ral head and neck cancer populations overseas.but ouly a few studies have been done regarding the quality of life or patients who havc undergone total glossectomy (Dnvidsoll ~•t:ll.. 1993: Ruhl ct aI., 1997).With regard to totn] glosso-laryngectomy no such studies have been undertaken.In South Arrica paticn1s arc onen diagnosed with advanced he<ld and m.'ck cancer and cxt<:nsive surgery may be the oilly treatment optiOll.Th~' issue llrdcbatc is whethcr the quality of life after operations slich as IOtal glossectorny and total glosso-Iaryngeetomy justify this drastic surgery.The answer 10 this qll..:stion is oflhe utmost imponnnce as it has implications for the patient who is going 10 havc a total glossn'tomy or glosso-Iaryngectomy.In order 10 survi\e.patients nrc ollen willing to tolcrate any form ofsllTgl•ry.If a good quality or lifi:: can bc achieved, it makes the usc of thcse radical proccdurcs more acceptahle to the patient and Ihe surgeon.Morton (2003) emph;lsiscd that patients m;!y kam to cupe well with dysfunction and disabilily by adjusting their lircstylc so that overall quality of lif... .' was not rclated to th\..' trcatmcnt received.Functional status and quality of lili: ar\..' thus nllt cquivalent.and function itsdfc.l1lnotpredict quality of Ii Ii: (Rulli et al.. 1997).
There!orc, observed dysfullction.disahility and distiguremem do not necess;lrily rdlcctthe patients' fating oftlu,.'irown quality of life.Also in total glossectomy and total glossolaryngectomy patients.one shoul(t be car~•rlll not to equal post, operative fUllctioning with quality of liti:.It is possible that a paticnt could be content with his/her quality of life postoperutively, A patient may feel that functional restrictions ar..: bearable in the light of survival and may adapt well to fllnction'll changes.II is therefore necessary to nbtain information regarding quality or Iiti:: as experienced by pat ients themselves.
Inlormation with regard to factors that affect postoperative H<taptation i~thus of th\..' utmost importance as it has implications lor pr~'-opcrati\e eounsclling as well as postoperative support.If the multidisciplinary rdlabilitation leam, including the spcech-Ianguag~' path.. )]ogisl. is awarc of Ihe ra('tors that may intluence quality of lili:, till' team \\ill be better equipped for ;lppropriate pre-operative counselling and postoperative psychosocial support.A well-prcparcd patient l11'ly also adapt better post-operatively than all unprepared pMiell1.Feedback from the patient in terms or quality of life mny thus infiuencc surgeons' choices and speech-Ianguagc pathologists' rch'lhilitation practiccs.

Aim
The <lim of this study was to detcrmine the quality of life of two panicipants who had undergone tota] glosso-Iaryngcctomy,

Research Design
A qualitativc research design \\as followed in the fonn of two case studies (parallcl case studies) of patients who had undergone IOtal glosso-Iaryngectomy.Case studies reler to qualitati\e studies of one or a few illustrated cases.It is a method invoh ing systematically gathering enough infonnation about a panicular person.social setting.e\ent or group to pennit the researcher 10 effectively understand ho\\ the subjl,.'Ctoperates or functions (Ilcrg. 2007).Infoonation regarding quality of life was obtained from the t\\ 0 panicipants through sel1li-structuredlsemi-standard face-ta-face interviews and open-cnded questions were asked (Terre Blanche & Durrheim. 1999: Berg. 2007 ,).Berg (2007) explains that the semi-standard intt:rview is mort: or less structured.thaI questiolls may be recorded during the interview, tllat lhe wording of quesliolls fife flexible.that the level or language may be adjusteu.lhal the interviewer may answer questions and make c1aritications and that the interviewer may add or delete probes during the interview.According to Pallon (1990) semi-structured interviewing begins with the assumptiollthat the perspective of others is meaningful.The obji.."Ct of such inleT\ iews is to get the I>o:rson being inteT\'iewed to talk about tlll,:ir expericnces.feelings, opinions and knowledge (Patton.1990).Open-ended questions arc utilised in order 10 ellcouragl.' lhe panicipams to idenlify arcas of imponance to them.using their 0\\11 \ocabulary (Pauon.19(0).

Materials :md ,\Ielhods
The researcher dc\ eloped an inteT\'ie\~schedule (Appendix A) containing a set of questions regarding different domains of quality of life (Neumann. 200(1).A topk guide ensured that the same inlonnation was obtaincd from both participants (Pallon.1990).The interview-questions were designed according to information oblained from the literature regarding quality of life in head and neck cancer patienls.The interview schedule included queslions abollt physical-.fUllctional-.social-and emotional/psychological well-being.
The intcrview schedule W:IS used 10 direct the interviews with the panicipants.but the wording and order ofthe questions were not lixed (Pallon.1(90).Questions were asked in the participants• first language.Multiple and leading questions were avoided to limit any suggestions of a desired answer from thl.' subject (Terre Blanche & Durrheil1l.1999).The interviews were conducti..-tl in the office of the researcher (first author) by the researcher.The intervil'ws were recorded on a high quality Panasonic RQ-L10 tape recorder.Audio recording of the interview Sl-"'Ssions allowed both the T\."Searcher and the panic-irant to cross check Ihe data gathered.thus enabling a means of validating the data.Panicipant I, \\ ho was non-verbal.communicated by means or writing.During this intervIew, the speech of the researcher \\ as tape-recorded to ensure complete transcription of the interview.The researcher transcribed the recordings and listened 10 the taJX-"S several times to ensure that all data were transcribed correctly.

('arlicillanl Seleclion Criteria
The following selection criteria were set: The participant should have undergone total glosso-laryngectomy: should I1Ilt have suf.. fered rrom any other medical condition than the glosso-laryngeclOmy: should not have had any other communication disorder: and should have been Afrikaans or English speaking as these were the languages in which the interviewer could conduct an interview.

Participants
Both participants were p.1tients at an academic hospital in Gautcng at the time of the study.This was an example of a purposive or judgmental sampling.\~here anyone in a hard-tofind target population \\3S selected (Nl'umann. 2000).At the timc of the study there \\ere only two sUT\iving total glos5Olaryngectomy palients Ihat could be tr.lcked in the Gauteng region.Participant I had surgery six weeks prior to the time of the inteT\'iew and Panicip3nt 2. seven years prior to till' interview.
Participant I was a 51-year-old Afrikaans speaking white male who had a T4N3MO squamous-cell l.':lrcinoma of the longue-base and 13ryn.\.lIe UlllJcT\Vent a Iutal glossolaryngectomy and bilateral radical neck dissections on lhc 4'h of February 2004.The oral c:Lvity was reconstructed with a Pectoralis Major lllusculo..cut'lIleous llap.The interview was conducted on the 23'd of March 2004.The patit:nt's COUTSe of radiotherapy began on the 29'h of J\'larch 1004.The puticl1I made usc of facial expressions and gestures to augmenL wrillen communication.At the lime o1"the intcrvil.'wthe panicipant \V:IS divorced.had lost his job as :1 security inspector and had poor social suppon.lie was from a low socio-economie income group.
Panicipant 2 \~as a 6J-)ear..old Arrikaans speaking white male who had a T-IN3MO squamous-cell c;lrcinoma of the tongue-base and larynx.Ill.' undement a total glossolaryngectomy and bilateral radical nl'l:k dissections on the ;t><lof December 1996.A Provox Prosthesis that makes tracheoesophageal voice production possible was insened at the time of the operation.The panicipam receiwd 3 six-week course of mdiotherapy post-operntively.The inteT\'iew was conducted 011 the 9'h or March 2004.The panieipant was a very lively communicator.His speech was li:lirly intelligibk, He made usc of a slow speech Tate.intonation.eye contact, gestures and facial expressions 10 augment his speech.At the time of the interview the p:lrticipant was married.resumed his work and had <In e:(cellent suppon struclLlre.lie was from an average socioeconomic income group.A summ:l1Y of tile participants' characteristics is shown in T:lole I. Tllbll' 1: Description of the t\\ 0 par1il;ip:lIl1s Thematic analysis of the content of the interviews was conducted at five levels.according to the guidelines of Patton (1990) and Terre Blanche and Durrheirn (1999).Terre BI,1l1che and Durrhcirn (1999) describe the process of data analysis as reading through your data repeatedly.and engaging in activities of breaking the data down (thematising and categorising) and building it up in novel ways (elahorating and imerpreting).During this process the researcher stcered clear of imposing prior theoretically derived concepts on the data.Instead, careful inspection of the narrative facilitated the generation and devclopment of new concepts from the research data via an inductive analysis.The following steps were followed: Familiarisation (I//(I immersion.The researcher read through Ihe data repeatedly and intensely.Relevant information was selected, irrelevant inforrnation was eliminatcd.kcy words were identitied and notes were made during the reading of the data.A summary was made of each of the components of the interview schedule (general information.physical wcll-being.functional well-being, social wellbeing and cmotional/psychological wcll-being).Inducilll!, ,{,ellles (ill relation to fhe research ({lIeS/ioll): The researcher idcntified the organising principles that "naturally" cmerged from thc data.This was done by inductivc analysis.meaning that themes cmerge from the data as opposed to themes being imposed on the data prior to data analysis.Coding: Coding means breaking data up in analytically relevant ways.The copy-and-pasle function of a word processor program was llsed to move bits of text around to fit the identified themes.£IahfJrOliOIl.Elaboration means the discovery of new dimensions of the subject that are being studied or looking at data in a fresh way.Comparisons were made of sections of text that appeared to belong together and comparisons werc made between themes identitied from the two interviews.III/CI7JrClofiol/ and checking: Themes were discussed in relation to available literature.

Ethical considenllions
Before initiating the research, the researcher received ethical clearance for the rescarch projcct from the Research and Ethics Committee of the I-luman Seicnces Faculty of the University of Prctoria_ Wrinen informcd consent was obtained from both participants and ethical issues regarding tape recording of interviews.anonymity.contidentiality and withdrawal from the research project were discussed.Both pllrticipants gave consent that results of the study may be published.Both participants were patients of a speech therapy department at an academic hospital and support-and follow-up services wcre available.

Trustwurthiness
Ivleasures to ensure trustworthiness that wcre implemented in this qualitative study included.truth-value.applicability.consistency and neutrality (Dc Vos. 2002).
Trufh-Wl/lle establishes how confident the rcsearcher is with the truth of thc tindings, based on the rescarch dcsign.informants, and contcxt (Dc Vos. 2002).On the research design level.truth-value was established by designing the interview schedule according to information obtained from the literature regarding quality of life in head and neck cancer patients.Semistructured interviews, which are an acknowledged 1001 in quali-tative research, were conducted in the participants' first Ian• guage (Afrikaans) to allow for frec expression.Interviews were recorded to permit transcription of every utterancc.Participant I wrote down his answers.1\11 the answcrs of Participant 2 were transcribed and unintelligible utterances were later verificd with him.In the results direct quotes (translatcd into English for thc purpose of publication of the data) from the transcribed data arc presented.
AppliClihilily refers to the ability to generalise from the findings to the greatcr population (De Vos, 2002).One perspective on applicability in qualitative research suggests that the ability 10 generalise is not relevant in many qualitative rescarch projects.Results of case studies can to some extent be generalised.but it was not the intent 10 gencralise the findings of this study to the greater population of total glosso-laryngeclOmy patients.Each person's situation is uniquc and thcrc are differcnt variables that may influence quality of life alier total glossolaryngectomy.Since IOta I glosso•laryngcetorny is such a radieal surgical procedure with vcry specific effects on function.it is possible that some or the cxperiences muy be similar in persons who have undergone total glosso-laryngectomy.Berg (1997) is of the opinion that case studies could 110t only represent the specific individual.group or event studied, but could also provide underslanding about similar individuals.groups or events.
COlIsi.\•fCII{:1' indicates whether the tinding would be consistent if the enquiry were replicated with the same subject or in a similar context (Dc Vos. 2002).This study can be viewed as consistent.as an Interview schedule with a specific topic guide was uscd to ohtain the intonnation.Th..:: thcmes that emergcd from the diflcrent questions were check..::d with the participants to assure that the mcssage that the participant was conveying to the interviewer was understood correctly.
Nelltrality fI.-fcrs to thc degree to which the findings are a function solely of thc infonnants and conditions of the rcsearch and not of Olher bi,lSCS, motivations and perspectives (De Vos. 2002).Questions werc asked in such a way that it should not have influenced the llnswcrs of the participants.Thc researcher mcrely determined and reported the views, perspectives and feelings of the participants.To establish whether the categories.explanations and interpretations of the d:lt:l were reliable, the data were also analyscd by a clinical psychologist with a doctoral degree and who has experience in qualitative research studies and contcnt analysis.The themes that were identified by the researcher and the conclusions were discussed with the psychologist.and a few discrepancies were resolved.

RESULTS AND DISCUSSION
The most prominent themes that emerged from the thematic analysis are described and discussed 1Il this section.The themes arc summarised in Table 2.For the purpose of gaining a comprehensive view of the cxpl:riences and tCelings of the two participants.the original categories or the IIlterview schedule namely physical-.functional~.social-and emotIOnal/psychological wellbeing will be slightly adapted.Experienccs ill these different domains interact and it may be artificial ((l categorise them according to the theoretical guidelines that were followed in the interview schedule.Themes that do nOI tit any of the original categories emerged and these will also be describcd.

Speech amI COftl1l1ll1liuuiotl
At the timc of the interview, which was six weeks postsurgery.Participant I was still not able to communicate verbally Quality of Life after Total Glossa-Laryngectomy and this circumstance had far reaching consequences_ The inability to speak resulted in him losing his job and led to high levels of frustration.Being a security-inspector, he relied on verbal communication.The inability to speak also prevented him from fully expressing his thoughts, feelings and desires.Communication needs could only be fulfilled in a limited way by writing.He said: 'I will never be able to speak again.It is incredibly difficult 10 be suddenly mute -after 51 years of talking.Ii is a strange world.To/ally strange.Because I can't speak I have losl my job and I am stntggling financially.Withom speech I am useless 10 Ihe company, because I have 10 speak wi/ll a radio cOlllral as well as to cliems.' Participant 2 experienced the same problem initially, but his life changed since he learned to speak.He could express his feelings, resume his work with greater ease and frustration was reduced.He expressed his experience of the loss of speech as follows: 'In the beginning il was difficull 10 commullicale because nobody underSlOod me.Everywhere I weill as well as 01 work I had to write if I wall/ed 10 communicate wilh al/yone.And that was !ms/raling,After I started willi speech Iherapy and I could speak 10 people, this has improved.' Communication is a major function of the face and neck.Tilting the head, facial expressions such as smiling and frowning, and above all, speech, laughter and other emotional expressions are all part of human interaction (Boone & McFarlane, 1994).The sound of one's vocalisation often mirrors one's imemal emotional state (Boone & McFarlane, 1994), It seems as though patients who are able to communicate verbally do better emotionally and psychologically than those who have to rely on writing.A loss of communication may also signify a loss of closeness and love, We create closeness through communication (Ventegodt, Andersen, Kromann & Mcrrick, 2003).Thc importance of verbal communication to quality of life confinns the role of the speech-language pathologist in providing intervention that will enable the patient to achieve intelligible speech.

Work/finances
The ability to work had a major impact on the partici~p ants' quality of life.Because he has not been able to work, Participant 1 experienced feelings of worthlessness and not being able to make a contribution to life.He said: 'People see me as a SOri ofparasite thai wallis to live on other people.People also see me as someone that has nothing 10 contribute, Withollt speech I am useless to the company, because I have to speak with a radio control as well as 10 clients, ' In contrast, Participant 2 experienced pride and found satisfaction in his ability to continue his career and provide for his family.This impacted positively on his self-image.He was able to go back to work two months aller the operation.This fact contributed to his feeling of pride, The ability to communicate verbally allowed Participant 2 to resume his work and that enhanced his process of integration into the community.This was not possible for Participant I who was non-verbal.

Perception ofotlrer peoples' reactiolls lowards tlrem
Both participants were very perceptive with regard to the reactions of people towards their "disability".At the time of the interview Participant I was more intensely sensitive than Participant 2. The fact that Participant I was interviewed only six weeks after his total glossa-laryngectomy, may explain why his sensitivity towards lhe reactions of people was more intense than those of Participant 2, Participanl I preferred to be alone and actively avoided people, allnough he longed to make contact with people as he did before.His inability to communicale verbally and the abnomtal way in which he cats caused reaclions from people in his environment.Participant I said: Participant 2 was also isolated initially.but over the years has gradually returned to the community, Only after seven years did he have the courage.for example, 10 attend a church camp.The tact that Participant 2 could communicate verbally facilitated the process of reintegration into the community.He could resume his work and comlllunicate with family and friends.Participant 2 said: '/" the begillfling / didll 'I lake pari ill allY actil'ilies.Bill Ihal has I/OII' challged.One 1/I11M nevel' isolale one f>'elf.I have tried Ihal, hll/ il didll'l 1I'0rk.Becal/se I cou/d,,'1 speak, I ul'Oided goil/g 10 church /01' a II'hole year.

Al'Ceptal1ce (md ,mpport
Participalll I struggled to cope due to a very limited support structure.He expressed his wish for his mother's acceptance and support more than oncc during the intcrview.Although his sister.ex-fiancee and ex~wife supported him, he expressed the longing for support from his mother.He also did not receive support from his children, previous colleagues or friends, Participant 1 said: Participant 2 reponed that his wife, family and friends accept him as he is.He had persistent support from his wife since Ihe lime of diagnosis.She supported him every step of the way ill all practical and emotional aspects.Two of his three children, people from his church and neighbourhood.his general practitioner and colleagues provide a great deal of support.His employer accommodated hilll and supported him in the process of resuming his work at1er the operation, Participant 2 has possibly coped with all the changes because of his excellent support structure.He said: 'I weill 01/ a church ca/llp iI/ Februw:I' for Ihe firsl lillie.where Ihe people treO/ed me as (I I/ormal hllman being. They treated me like a norll/al hUlllan hcing.II is wrong ifpeople do I/Of treal yOIl as a I/orllla/h/llllan heing./Jill ill general people accept me fol' I\'ho I a//l.Nobo(O' rejecls //Ie, A'~I' filll/i/y has suppOl'led 11/1' physica/~1" (Iud ell/o/ionally.No ol/e /'()('c(ed II/('.We go Oil holiday 10gelher I\'hen we can.One 111/151 h(lI'e sl/pport -it is \'el)" illlporianl.. Social support can be defined as lhe resources provided to people through their interactions with other people.Morton (1995) stated that lack of adequale family support has a negative impact on quality of life.Head and neck patients should be provided with the necessary support services early in the process.as well as with follow-up later in the process (Casper & Colton. 1993), Support should include medical as well as psychological help (Harrison, 1983).As psychological distress is common in palients with head and neck cancer.psychosocial support has a role in reducing this distrcss (I halon & Williams.2001).In addition, social support.from cilher fal11ily members or groups, can help restore some of thl' loss of conlrol that canccr p:llienlS may experience (Sheridan & Radmachcr, 1992).Thus, thcy necd to bc provided with as many opporlunities as possible to increase their sense of control.Vickery et 'II. (2003) funher stated that the physical and psychological stresses from head and neck cancer could also be substantial for patients' panners.Partners may in fact report greater distress than pmients may on some quality of life scales (Vickery el al.. 2003).Partners or significant others may also go lhrough a process of grief while accepting the changes in the person close to them.Support services should always be available 10 the patient and his or her significant others.Structured education and support-group based services playa major role in meeling information and supportive needs (Todd, Roberts & Black. 2002).

Chullged self-imttge
Self-image refers to our overall perception of ourselves.and the way we feel about how others sec us (Appleton & Machin.1995).130th participants expcrienced feelings of being "dIfTerent" from other people.Participant I expressed the changes in his way of eating and communicming as being the causes of this perceplion of being "different".Change in physical appearance is another reason lhe participants experienced themselves as "different".Partieipanl I stated: '/ gel afi-ighl e(Jch lime I look ill Ihe II/irror•. Participant 2 insisled thm people should treat hi111 as "a normal human being".These words may sugge~t that he still has no! completely accepted himself a~"nom1al" or that hc conslantly needs aflirmation thai he is not "abnomlal", Even though Participant 2 acquired the ability to COlllmunicate verbally, lhe glosseclOmy speech and tracheoesophageal voi(~c does nol sound normal, This fact may contribute to his feeling of being differenL Facial appearance is part of our overall self image and an importanl enlity in eSlablishing interpersonal relationships.The face is the most visible bodily area where all the major senses arc located, as well as being the area of a person's selfidentity.Disligurement in this area has far-reaching implications for a patient's psychosocial interaction with the world and adversely alTects the patient's self-esteem (Appleton & Machin. 1995).Gamba et al. (1992) suggested that a head and neck cancer patient's self-concept should be studied as a possible diagnostic parameter to identify individuals at high risk for psycho+ social maladjustmcnL The fact that palients "no longer recog-nise themselves~was the most frequently expressed reason why patients felt that treatment for head and neck cancer was not worth the effort (Gamba et al., 1992).
The issue of identity needs to be carefully considered in total glossa-laryngectomy patients.They may experience themselves as "changed" or "different" not only because of the facial disfigurement but also due to the loss of voice.The voice of a person is as characteristic of the person as the face is.Facial disfigurement, loss of voice and the inability to communicate are all closely bound to a sense of loss of identity.Speech-language pathologists should be aware of how the patient's self image has altered following total glosser-laryngectomy.They should also be aware of the patient's resources for coping and of any grief reactions that are evident.The patient should be referred for appropriate counselling if needed (Casper & Cohon. 1993).

Adjustment
Adapting to a major change in one's life such as a total glosscctomy or total glosso-Iaryngectomy is a process that may take many years and even a lifetime.Participant I was still in the beginning phase of the process of adapting to a new life, and did not yet posses the skills to help him cope with all the changes in his life.He was not even prepared for the changes that were imposed on him by the surgery.He said: ./ feel like a baby ill an IIl/knoWII world.I Jw~'e to learn to crawl before I call wolk again.. Participant 2, who had the surgery seven years prior to the inter• view, reported that his depression decreased over the seven years as he adapted to his situation.He had come to tenns with many of the changes in his life.including an altered way of eating and communicating.He described this coming to tenns as a process that took place over the years.He went through different phases of growth towards acceptance.The gradual acceptance by family and friends could also promote patient adaptation as is evident for Panicipant 2. I-Ie said: Head and neck cancer and its treatment place significant adaptive demands on patients and their families (Katz et aI., 2003).During the first year of treatment.almost a thitd of head and neck cancer patients reponed having mood disorders (PelJUson, et al., 2003).Casper and Colton (1993) explained that some individuals with head and neck cancer could initially withdraw from social contact, especially if people show evidence of discomfon with their condition.This withdrawal is a normal stage in the process of accepting changes in their self-image or functional abilities.Hutton and Williams (2001) reported that depression tends to decrease with time after the onset of head and neck cancer, and also decrease with increasing age.Monon (1995) reponed life-satisfaction scores in head and neck cancer patients to increase over time.

Quality of life
The participants were asked questions about their perception of changes in their quality of life.Panicipant I felt that his quality of life has drastically decreased since the surgery.He was still mourning the loss of communication and the ability to eat nor• mally.He said: 'Before the operation I could do so many things that are no longer possible.. Panicipant 2 on the other hand felt that his quality of life after the surgery was beller than his quality of life shortly prior to surgery.Since the operation he has :ldapted his life to accommodate his changed abilities.He has again found meaning in life and was continuing to improve his quality of life by expanding social contact.
Quality of life as globally assessed by patients does not directly correlate with measures of physical function, but appears to depend on psychological, spiritual, and existential fac• tors and also suppon systems (Simmons.Bremer.Robbins, Walsh & Fischer.2(00), Kim and Alvi (1999) found that 94% of patients who had been diagnosed with cancer.feared death, metastasis, recurrence.and the loss of the ability to swallow, speak or breathe in the usual manner.Uncertainty over the future and the reality of the loss they experienced impact on the subjective perception of quality of life.Hopefulness and having a life purpose help to balance the worse outcomes (Dow, Ferrell, Leigh, Ly & Gulasekaram, 1996).

Pre-operQti~'ecounselling
Both panicipants received very lillie pre-operative information or counselling.According to both panicipants the absence of pre-opcrative counselling impacted negatively on their post-operative recovery and quality of life.Adjustment to the major changes in self image and functional ability was compromised because they were not empowered to prepare themselves for post-operative changes.
Participant I expressed his shock at the way his body was changed when he woke up after the operation.He was also not aware oflhe fact that he was going to lose his voice.Participant I said: 'I was upset.bm whal does it help?When I woke lip I saw there wos a hole in my throal.The hole in my cheSI wos jusl a big shock: nobody lold me that Ihere is going 10 be a hole in my chesl.. Participant 2 received some infonnation regarding swallowing and speech fTOm his surgeon, but also did not receive any counselling from other members of the multidisciplinary team such as the speech-language pathologist.He said: 'He told me il was going 10 be a big operation.He ex• plained to me what to expect.also wilh regard to speech and swallowing.He told me that I won 'I be able to speak normally ogain.. Shared decision making (SDM) is currently recommended as a standard of care, especially when there are alternative treat• ments available or when there is uncertainty about the outcomes of treatment (Mandelblau, Kreiling. Figeuriedo & Feng,2006).According to Fayers and Machin (2000) many patients and patient suppon groups demand to be given full information about the consequences of the disease, its treatment and the impact on aspects of quality of life.Patients should also be able to express their opinions (Fayers & Machin, 2000).Street (1997) found that patients with breast cancer who had more actively panicipated in their consultations with their doctors, panicularly in tenTIs of offering opinions, assumed more responsibility for treatment decisions, Davidson et al. (1993) staled that candidates for total glossectomy should be carefully considered and that pre-opel'alive psychiatric evaluation could assist the surgeon in making apt decisions regarding treatment.Newell. Ziegler, Stafford and Lewin (2004) found that head and neck cancer patients need individualised pre-treatment infonnation in an appropriate environment and that there should be more than one opportunity for patients to discuss their options.Thereby the patient would be able to make an informed decisiolllO undergo surgery.
If the experiences of the two participants in this study are a true reflection of the nature of tile local service delivery model.the relevant professionals need to take a serious look at the issue of pre -opcmtivc counselling, shared decision making and infomled consent before glosscctomy and glosso-Iaryngectomy in South Africa.Pre-operative assessment and counselling by a multidisciplinary team including the surgeon.psychologist.social worker.physiothempist and speech-language pathOlogist would be the ideal.The team should prepare the patient and family for what the operation entails and how it will an'eet post-operative functioning.

Role oftI,e .\peeclJ-lulIglluge putllOlogi,~t
Both participants highly valued the contribution of the speech language pathologist to their rehabilitation and quality of life.The speech-language pathologist has knowledge of the effects of total glosso-Iaryngectomy on swallowing and speech and also insight into the emotional and social effeets of altered ways of swallowing and communic:ttion and is therefore equipped 10 support patients.By providing pre-and post-operative counselling as part of a multi-disciplinary learn and speech and swallowing intervention, the speech-language pathologist can make a major contribution to improve quality of life for patients with a glossectomy or glosso-laryngectomy.

CONCL.USION
Total glosso-laryngectomy represents the extreme of extensive head and neck cancer surgery.Both participants expressed their appreciation of being alive.but stated that their quality of life was greatly affected by the surgery.The results of Ihis study showed that they tend to feel isolated and difTerent from other people.They arc very sensitive 10 the reaction of others towards their physical appearance and their changed way of eating and speaking.Functional speech, as well as acceptance and support from significant others appear to be the most important protecting factors of quality of life.Time appears to be a contributing factor to adapting to physical and functional changes.
An important outcome of this study is the raised awareness that shared decision 11l3king and pre-operative counselling of the patient and significant others in our local service delivery context needs to be addressed.A multidisciplinary team which includes the surgeon.speech-language pathologist.physiotherapist.psychologist and social worker should prepare the patient and significant others for the consequences of surgery for head and ncck cancer.To make an infonned decision regarding surgery.it is crucial that the patient is aware of all the effects of total glossa-laryngectomy on physical appearance.swallowing, and communication.
The choice to undergo surgery remains with the person with head and neck cancer.In the case of Participant 2 the choice to undergo a glosso-laryngectomy 10 cure him from cancer was a worthwhile decision.After seven years he was still alive and was leading a fulfilled life in spite of the changt.'S in functional ability.In the case of Participant I there is no easy answer.Particip.1nt 1 passed away 6 months after the interview due to massive local recurrence and metastases.

Table 2 :
Summary of quality oflife as perceived by the two participants Very aware and sensitive, perceived reaction as rejection Prefer to be alone, avoid people, but alsowantlo make 'I am shy.Yesterday Ihe wife oflhe guy lying in the room opposile me came to visit him.The way in which I em is fUl/ny because I fllllSt place Ihe food al Ihe back of my mouth, and it upsets me if people walch me while I'm ealing.There is a lady in rhe ward Illal calls me {/ "rude bastard" because I'm nOI lalking to anyone -unlil I wrote her a message to explain why I'm nOI la/king to anyone.All strange (might be (/ betler Iran.s/ation: unfamiliar) people think I'm mde.They accept my condition but are clearly uncomfortable.' Seven years after his total glosso-Iaryngectomy, Participant 2 has possibly come to tcrms with these reactions, although he contmdictcd himself about this issue during the interview, He was still very self.-consciouswhile eating, Initially, his altered way of speech also drew attCl1\ion.Participant 2 said: '/ am I'el)' self-conscious find / think people are luokillg af me -fhat i~' my problem.Or whell / f>peak.people look at me ill a/I/IIIIY way.When / speak.people stare at me. especially chi/drel/./f did bodlN me.bll/ 1101 any more.Unfamiliar people do IIOf bother me (/11.1'fIIore when / ill/eracl wi/h them, They go all (/S if nOlhing is IUlI'e (/ problem 10 wrife \1'1/(/1 / 11"(111/ fa say.If people OIl~V \lwl/ed 10 read.! /1 is Ihe on~\' lI'ay to tell people Ihal allhough I do 1101 hare a IOllgue or a voice, I sliII am a persoll wilh/eelillgs./lyillg 10 share Ihose/eel-iI/g,\".
y members {lmlfricnds acccpl me as I alii.BII! there are others Ihal do 1/01 lI'allf 10 IIl/derSI(JIul.Like II~\' lIIother.for eXlimp/e.She is I'ely impalielJ/ with IIIc, If / II'ri/e hcr a message, I call sec fhal she docs /lot really 11'0111 10 read it.~r I s/lap Illy fil/gers fO (IIIraCI her al/elllioll.she says Ihal she is IIOf a dog !lwi 1 call slJap my jingcl's at.' If it wasn 't for my wife.the speech Iherapisl alld the Grace of God, I wOllldn 'I ha~'e been here today.Never pity YOllrself.II doesn't work.Life is tOllgh.it does nOI help to sil in the ashes.One should 'Iever gh'e lip hope!One should live into Ihe .future.not in the past.Never isolate yourself.I did that and it didn't work..