fredag 25. april 2014

Having cancer is not a fight or a battle

Det er en stund siden jeg har skrevet noe, mest fordi det ikke lenger skjer  noe nytt. Det er den samme rutinen hver dag; stå opp, spise et par brødskiver og et batteri med piller, kjøre til sykehuset, bli bestrålt i ca tre minutter, på med buksa og kjøre hjem igjen. Om jeg merker noe resultat av all denne cellegiften og bestrålingen? Foreløpig ingen ting, kun bivirkningene. Så jeg får vel bare fortsette å vente i spenning. I mellomtiden kan jo de som har lyst, lese nedenstående artikkel, skrevet av 

Why is military language used to describe cancer? These words are meant to help patients but can have the opposite effect
battle scene
'In my world, having cancer is not a fight at all … Some days cancer has the upper hand, other days I do.' Photograph: Sportsphoto Ltd/Allstar

"She lost her brave fight." If anyone mutters those words after my death, wherever I am, I will curse them. I would like to be remembered for the positive impact I have made on the world, for fun times and for my relationships with others, not as a loser. When I do die, I will have defied the prognosis for my type of cancer and achieved a great deal with my life. I do not want to feel a failure about something beyond my control. I refuse to believe my death will be because I didn't battle hard enough.

And that's the problem; in my view the language used around cancer seems to revolve around wartime rhetoric: battle, fight, warrior, beat. While I recognise that these violent words may help others on their journey with cancer, as someone who is never going to "win her battle" with this disease, I find them uncomfortable and frustrating to hear.

However, I do understand why this military language has penetrated the media, charities and everyday life. It is meant to evoke positivity at an unimaginably difficult time in someone's life. But I think it can have the opposite effect and we need to challenge it and to break away from how we have been conditioned to think and speak about a disease that will affect one third of us at some point.

Even for those who survive or "conquer" the disease, it will remain with them for the rest of their lives; they may be left disfigured by treatment and have to live with the constant anxiety that their cancer may return. They may not wish to have the label of "survivor", which must interfere with the return to normality.

I cannot see anything "brave" about how I live my life. Bravery implies a choice. Someone who lays down their life to save another human being is brave. I didn't choose to be affected by cancer and I don't believe being placed on the courage pedestal helps me to continue living. Just because I have cancer, it doesn't mean I cannot make mistakes or be selfish, but it almost becomes an expectation that because you are a cancer patient that you somehow become the perfect person. These expectations can be tough to live with on a daily basis.

In my world, having cancer is not a fight at all. It is almost a symbiosis where I am forced to live with my disease day in, day out. Some days cancer has the upper hand, other days I do. I live with it and I let its physical and emotional effects wash over me. But I don't fight it. After all, cancer has arisen from within my own body, from my own cells. To fight it would be "waging a war" on myself. I have used chemotherapy on two occasions to bring the cancer back under control and alter the natural history of the disease. I submitted myself to this treatment gently, and somewhat reluctantly, taking whatever each day had to throw at me. I certainly didn't enter the process "with all guns blazing".

Cancer Research UK uses the slogan "One day we will beat cancer". This may sound defeatist but I don't think we ever will. Cells need to divide in all of us to remain alive, to grow and repair our bodies; sometimes this process goes wrong and the result is cancer. We will become better at understanding these processes and how we can target them therapeutically, but I cannot imagine a human society free from cancer, no matter how much money we invest.

As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.

tirsdag 8. april 2014

Jeg er ikke billig!

Blir litt utmattet av den pågående behandlingen, og da synker motivasjonen for å skrive blogg. Men jeg har for moro skyld prøvd å regne litt på hva jeg koster den norske stat for tiden.

I forbindelse med oppstart av strålebehandlingen, har jeg også begynt på en ny type cellegift, denne gang i tablettform.Tablettene skal forbedre effekten av strålebehandlingen. Og selv om jeg får dem gratis - på blå resept og med frikort, så er de selvfølgelig ikke det. Cellegifttablettene koster 125,- kr. pr. dag. I tillegg tar jeg de samme tabletter som jeg tok før, pluss smertestillende og tabletter for å kure bort en urinveisinfeksjon. Totalt tar jeg nå 23 tabletter hver dag. Det er nesten et lite måltid i seg selv. Ifølge Felleskatalogen koster disse til sammen ca 200,- kr. pr. dag. I tillegg har kreften tvunget på meg forskjellig medisinsk utstyr som koster rundt 100,- kr. dagen. Noe av dette må jeg bruke livet ut, noe håper jeg å slippe etter hvert.

Altså 300 kr. dagen i tillegg til stråling fra en kostbar maskin, cellegift i infusjonsform og noen dagers innleggelse på sykehus - som visstnok koster 5.000 kr. døgnet. En større operasjon venter. Den er sannelig ikke gratis den heller. Det er nesten umulig å regne ut nøyaktig hva en kreftpasient koster, men billig er han ikke. Min behandling har sikkert kostet 200.000 før sommeren er over. Det er når man tenker over dette, man igjen blir takknemlig over å bo og leve i et land som Norge. I tillegg til at staten dekker det meste av dette, vil en yrkesaktiv person beholde lønn i ett år mens han er syk, mens vi pensjonister faktisk kan leve av den pensjonen vi får. De som må reise en viss avstand, får dessuten dekket reiseutgifter til behandlingen. Jeg får ikke det, fordi jeg bor innenfor vanlig bussavstand, og det er helt OK. Det blir som å reise frem og tilbake til jobb.