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DAGARNA GÅR

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26:e maj, dag 88 EB. Dagarna rullar på och tiden går ännu fortare nu när jag börjat arbeta igen. Jag har snart gjort en hel månad och det har gått jättebra. Läkaren har sagt att det tar minst 6 månader att återhämta sig fullt ut och det är 180 dagar, vilket innebär att jag har 92 dagar kvar innan jag kan utvärdera om biverkningarna kommer att gå tillbaka eller inte. Nu är det främst tre saker som stör mig. Fötterna som sover hela tiden och ju mer jag går på dem ju hårdare sover de, jag har gått 18 hål och det fungerar, vänjer mig vid att fötterna är som de är. Saliv produktionen är väldigt låg, vilket är jobbigt när man äter. För att det inte ska bli för torrt måste jag dricka mycket. Smaken är nästan tillbaka det är bara en del saker som jag har svårt för.

Maten är viktig och jag äter ganska normalt nu, vilket hjälper mig att orka mer och att stoppa viktminskningen. Jag fryser inte heller längre och jag tror att det hänger ihop med att jag äter ordentligt. Det går åt en hel del energi för att hålla värmen också, även där har maten hjälpt mig.

Känner att det är lätt att komma in i ekorrhjulet igen, äta, sova, jobba och gnälla på i-lands problem. Ska försöka hålla mig ifrån att hamna där igen. Nu vet jag hur fort livet förändras och att det är viktigt att ta till vara på den tid man har, den kan vara slut imorgon. Njuta av livet och minska på alla egenpåhittade måsten som många gånger kan kännas som tvång och därmed tar det bort det roliga.

I nästa vecka är det dags för tandläkaren igen, de följer upp mig tätt eftersom risken för karies är stor efter strålningen framförallt för att salivproduktionen är låg. Jag sköljer munnen med fluor morgon och kväll, nu är det upp till bevis om det hjälper eller inte. Nästa milstolpe blir röntgen den 5:e juni, jag försöker koppla bort det men tanken kommer tillbaka då och då. Tänk om de hittar något mera, det går inte att oroa sig för det hela tiden då kan man ju inte leva. Som sagt det är svårt att helt nonchalera de tankarna.

Kommentarer

  • Yngveson`s i stan säger:

    -Skönt att läsa dina tankar igen och att du bättrar på dej
    hela tiden. Vi är imponerade över din kraft och energi!
    Jobba inte för mycket, utan njut av livet och denna härliga sommartid!
    Kramar till Er från oss!

    2013-05-26 | 22:31:59
  • Carin (Elias mamma) säger:

    Hej igen,
    Känner tyvärr så väl igen allt du skriver om de första månaderna EB. Min son, Elia, gick igenom detta våren 2011, då 16 år gammal. Han upplevde det som att han var den enda i hela världen med både denna cancer och också dess biverkningar. Jobbigt att vara mitt i tonåren och få cancer....

    Hans salivproduktion kom så småningom tillbaka, fast han han dricker fortfarande en hel del vatten. Den första tiden efter avslutad behandling gick han hos sjukhustandläkaren varje månad, men nu går han till vanliga tandläkaren varje kvartal. Han häller gel med hög flourhalt två gånger i veckan i plastskenor gjorda efter sina tänder. Förutom det använder han floursköljning varje dag.

    Han fryser inte lika mycket som han gjorde innan pga att han kan äta mer och då får mer energi. Smaken har kommit tillbaka , fast han kan fortfarande inte äta för salt eller kryddstark mat.

    Vikten är det fortfarande problem med pga att sköldkörteln åkte på stryk under strålningen och ämnesomsättningen inte är balanserad. Därför tar han nu Levaxin för sköldkörteln, men vi har inte hittar rätt dos ännu. Han gick ner 5 kg (10% av sin kroppsvikt) under första cellgiftsbehandlingen och det tog många månader innan han gick upp dessa kilon igen. Det senaste året har han bara ökat 4-5 kg i vikt och han väger nu bara 54 kg och är 173 cm lång.
    Han har i vinter fått näringsdryck igen av dietisten på sjukhuset och vi försöker proppa i honom fullt med protein, fett och kalorier.

    Han går på Magnetröntgen, lungröntgen och till ÖNH för fysisk kontroll varje kvartal. Hittills har allt sett bra ut, peppar, peppar. Audiologen varje halvår och ögonläkaren varje år. Blodprov varje månad för att kontrollera sköldkörteln och vikten. Tandläkare/tandhygienist varje kvartal.

    Det gäller att ha stenkoll på att kallelserna kommer när de ska, för visa avdelningar på sjukhuset är inte vana vid att skicka ut kallelser så ofta. Glöm inte att stå på dig och ring sjukhuset om du inte får kallelserna i tid!

    Hoppas att allt fortsätter att gå bra för dig. Det är så viktigt att hålla humöret uppe och vara positiv, för jag tror att detta gör att kroppen fortsätter vara stark och kunna motstå återfall.

    TACK för att du bloggar om ditt liv. Det är så viktigt både för mig som förälder och för Elia att läsa om en annan person som går igenom exakt samma!

    (Jag har hittat en annan blog om en kvinna som också har haft nasofarynx cancer. Hennes blog heter Min kamp mot cancern. Hoppas ni kan utbyta erfarenheter.)

    2013-05-29 | 12:44:06
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