It was never this bad last year.

It really wasn’t. Sure I was nauseated for a longer period, but at least I had some relief during the day, or when my gums swelled up and I looked like a chipmunk, it only lasted for a couple of days. But these past 10 days have only given me short periods of pain and fever relief. Otherwise it has been going on non-stop.

I’ve continued to gain weight because of fluid retention. +12 kg. My legs are like logs and my ankles are so swollen. I do not recognize myself. Since ice cold water or other types of liquids is the only thing that helps me as an instant pain reliever when my mouth has been hurting, I have been drinking a lot myself and have now been restricted to a maximum of 1,5 liters of fluids per day, which is very hard for me as water is the only thing I am really craving. The doctors say that since I keep running a fever and my blood pressure may drop, it is better to have extra fluids though than too little.

The pain in my mouth has increased. I cry from pain every day I wake up. This is a tiny bit better since yesterday though, but I must keep eating quite high doses of morphine and this has really affected me. I have been hallucinating, seeing animated things in the room, especially animals. I’ve also seen people in the room. I have always known it hasn’t been for real, but it is still unpleasant. The most scary thing has been that I have been talking nonsense at times and also that I forget things and that I cannot focus. Sometimes I have had to rewrite a text message five times before it makes sense. I fall asleep easily, or I sort of phaseout and I instantly start dreaming or thinking about something. I can never remember what it’s about, just that it makes me feel uneasy. Tried to stop with the morphine on Friday and started scaling it down. It worked for about 24hours and then it was unbearable. Yesterday, I wasn’t able to speak for a couple of hours as it hurt so bad.

The insights I have had about death and what I want to do with the time that I have left has not changed. I still feel calm when I think about it and I have started planning my funeral, something that actually does not feel that strange at all. But if these are my last couple of weeks, couple of months, I really don’t want to feel this way and it makes me scared knowing that the next treatment is a scaled up version of the first one and if this is the way my body reacts to the first “milder”  treatment,then how is it going to cope with the aftermaths of the second one…? I do not believe that treatment is always better than no treatment. First, you need to be presented with the facts and the alternatives. Something I am not so sure that the doctors can give me at this point.

At the moment, I do not know if I will even come home before the next treatment starts. As my white blood cells aren’t back and since I can’t get rid of this fever (the doctors do not know why that is) they can only speculate and hope that I will be better at the end of this coming week, be home for Christmas and then being readmitted. I do not care any longer whether it is specifically during the Christmas days that I will be at home. I just want to have a couple of days without a fever, without morphine and without feeling like crap.

37 Replies to “It was never this bad last year.”

  1. Tack för att du skriver, trots att det måste vara en oerhörd ansträngning. Hoppas att det är till någon tröst att vi är många som tänker på dig . Håll ut Hanna!

  2. Hanna ❤️
    Önskar så att det ska gå lättare att lindra dina symtom snart, är ju outhärdligt så som du har det nu. Och om det är så att tiden är kort, så är det ju såklart det allra allra viktigaste. Så du kan och orkar ägna din tid åt det du vill och behöver.
    Kram S.

  3. Hanna, din smärta framstår som ofattbar. Det är så starkt av dig att skriva om den, att du orkar.
    Måtte smärtan ge med sig, det önskar jag av allt mitt hjärta. ❤️

  4. Det är verkligen smärtsamt att läsa det du skriver, så innerligt gripande, och naket. Ärligt. Tacksam för att du vill dela med dig. Tänker på dig! Stor kram ❤️

  5. Åh Hanna, så fruktansvärt tungt. Hoppas det blir bättre snart! Vi tänker på dig och önskar av hela vårt hjärta att du får komma hem snart och må bra! kramar från hela familjen!

  6. Åh Hanna. Jag önskar att jag kunde trolla bort din smärta. Tänker mycket på dig. Tänk om allas våra tankar kunde ge dig lindring. ❤️

  7. ❤️❤️❤️
    Ofattbart och så jäkla orättvist, håller med din läkare om att vi borde skicka detta till någon orange snubbe med taskig frisyr på andra sidan Atlanten…
    Jag hoppas att du har massor av tid kvar såklart, något annat gör för ont att tänka på, även om ämnet oundvikligen kommer upp. Hoppas att du blir av med alla smärtor så snart det bara går, går ju inte att föreställa sig den plågan
    ❤️❤️❤️

  8. Älskade Hanna…! Så ont det gör att läsa om hur gräsligt förfärligt jobbigt du har det nu … Jag blir så arg och ledsen, om det ändå fanns något vi kunde göra. Så många vi är som bara kan hoppas och hoppas och hoppas att du snart snart får komma hem och må bra och vara med oss här igen❤️❤️❤️

  9. Hanna–I just received word from Elin about your 2nd diagnosis and wanted to reach out to you with words of hope and healing from Minnesota. I pray you will get stronger and be able to enjoy some peaceful, pain free moments. I am so happy we were able to visit when we did and have such a wonderful time with you and your family. You will be in my prayers every day. Love, Erin & Steve Berens

  10. Hanna! Mina tankar går till dig….och Cajsa denna julemorgon.. Hoppas att er jul blir så god som det bara går och att du får lindring i eländet.
    Alla varma kramar!!/ Ninni

  11. Kära Tomten, jag önskar
    Att Hanna blir frisk snart
    Att hon inte skall ha så ont
    Att hon inte har feber
    Att hon får en god jul!
    Och en tröja (men strunta i den, den är inte viktig).

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