Vervolg!

Vervolg!
Heel veel dank voor alle steun na mijn vorige blog. Wat is het fijn om te horen en te lezen hoeveel dit blog wordt gelezen en hoeveel mensen met ons meeleven! De problemen kwamen als donderslag bij heldere hemel, niet alleen voor jullie, maar ook voor ons.

Gelukkig gaat het mentaal weer wat beter. Geen idee waardoor de dip is ontstaan, maar hij was er wel. Voor de 1e maal in 4,5 jaar. Best nagedacht over de oorzaak, en die is toch het ontbreken van een toekomstperspectief. Het gaat langzaamaan minder en ineens was het klaar. Dat besluit was ook snel genomen. Op zondagmorgen heb ik, zoals gebruikelijk, de medicijndoosjes voor de hele week gevuld, en op zondagmiddag (een uur of 4 later) besluit ik om geen medicatie meer te nemen. Lekker over nagedacht dus #not. 

Inmiddels een krappe maand verder en hebben we de acties uitgezet. Ik neem toch weer regelmatig oxycodon. Zonder is het onmogelijk om nog iets te ondernemen, gewoonweg omdat ik het dan niet volhoud. Veel pijn en totaal geen energie. Met de oxycodon kan ik nog iets. Zien jullie me buiten of op een verjaardag dan weet je dat ik aan de pillen zit 🙂

De afgelopen 3 weken heb ik 3 maal adergelaten. Vorige week een keertje zonder Marjolein, maar met een vriend die ook een afspraak had in het UMCU. Gewoon gezellig dagje uit met elkaar. Het ijzer moet omlaag. Vandaag bij de controle was het ferritine weer gezakt van 5.152 naar 3.941. Mijn Hb is, ondanks een liter bloed aftappen in 2 weken met 9 nog steeds hoog, en we besluiten om de komende 3 weken weer 3 maal een halve liter bloed af te laten tappen. Dat is veel. Nu dus in 6 weken, 6 maal een halve liter. Normaal doe je daar bij de bloedbank 1,5 jaar over en ik dus 6 weken.
Ondertussen kijkt de hematoloog of de  bloedbank in het UMCU kan komen om de ferese te doen. Daar gaan we over 3 weken mee verder.


Maatschappelijk werk.
Vorige keer al geschreven dat we een afspraak hebben gemaakt om de mentale problemen te bespreken met maatschappelijk werk. Vandaag was het zover. Ik begin met uitleggen wat er allemaal gebeurd is de afgelopen jaren (was ik inderdaad wel even mee bezig). Dan leg ik de situatie van december uit en geef daarna gelijk aan dat hij me niet hoeft te leren hoe ik met mijn situatie en de vermoeidheid om moet leren gaan. Ik weiger namelijk om me er bij neer te leggen dat dit de eindsituatie is waarmee ik moet leren leven. Daarin voel ik me gesteund door mijn hematoloog die ook niet gelooft dat dit het eindpunt is.
Ach, was dus niet zo gemakkelijk voor de man, maar hij werkt op de afdeling hematologie/oncologie en zegt “vrijwel iedereen die hier onder behandeling is, komt bij mij wel een keer langs”. We nemen de dagindeling door (met structuur), bespreken de elektrische fietsen (waarvan hij de aanschaf ziet als een stuk acceptatie) en nog wat zaken. 

Omdat het met mij al iets beter gaat en we de te hoge ijzerwaarde (ferritine) intensief proberen te verminderen, besluiten we het even aan te zien. We hopen dat deze behandelingen de vermoeidheid verminderen. We spreken af om eventueel een afspraak te maken, als er geen enkele verbetering meer is in mijn vermoeidheid.




169 gedachten over “Vervolg!

  1. Hoi Dolf, weer gelukt om je blog te lezen dank je.
    Heb 3 jaar geleden mijn elektrische fiets aangeschaft wat ben ik daar enorm blij mee.
    Heerlijke fietsen zonder veel kracht te zetten.

  2. Hallo dolf ik ben een vrouw uit Zuid Limburg heb pas te horen gekregen dat ik mf he daar voor heb ik aldrie jaar mds met nu elke twee bloedtransfusie heb de transplantatie niet gedaan had ma 20% kans op overleven vond het fijn om in blog te lezen hoop voor je dat goed blijft gaan groetjes uit Zuid limburg

  3. Goedenmiddag,
    Dank je wel voor je reactie. Sorry dat ik nu pas een antwoord geef, ik had het gewoon niet gezien.
    Ja, een transplantatie is een heftig besluit, maar ik had geen enkele keus. In ieder geval heb ik nu weer wat verlengtijd gekregen.
    Mocht je interesse hebben, ik heb een facebookgroep opgericht voor Nederlandstalige MPN patienten. Zitten inmiddels meer dan 100 mensen op en die delen elkaars ervaringen. Hoeft niet hoor, maar het kan helpen bij het maken van keuzen.
    Groeten,
    Dolf van den Berg

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  23. Amazing that the Hurley’s would suck up to Hill and RU. What did RU ever do for them? RU fired Danny as an assistant and during his playing days at the Hall the RU players were either instructed or decided on their own to try to take him out and injure him during games. Yeah, suck up to RU but ignore your alma mater that stuck by you in tough times.

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  53. אז מה היה לנו פה: פרסמת פוסט חשוב ומעניין שגרם להרבה גברים להטיל ספק בדרך שבה גידלו אותם ובאופן שבו הם תופשים את עצמם ומערכות יחסים. בתוך הבלבול וחשבון הנפש, הכתובת המיידית לחלק מההתלבטויות היתה את, שכתבת את הפוסט. תגובתך על רגל אחת היתה ״תעופו מפה, אתם מקלקלים לי את היום סוציופטים״. נו מילא, העיקר שיצא פוסט שנון וחד.

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  61. Henry 11:00 “Jon, you imply your feeling of superiorty. Good luck with that.”So, what is your explanation as to why the message of religion takes with some people and with some it does not? Certainly, the contemporary standards of historical evidence do not support it. It seems to me it is people’s feelings, their emotions, that make it work for some. People with such emotions are not inferior, they just are able to think and reason in a different way than people who see nothing in it.

  62. Very interesting. Writers going to schools and talking to children often feel great pressure to be funny, to be rewarded with great gales of laughter, but I can't help thinking that the best events are often much quieter, focusing on the more difficult and introverted pleasures of books. If children want to giggle, they can just turn on the telly, but how often do they hear from someone about the realities of writing a book, telling a story, following a character through page after page, wondering where he or she is going to lead you?

  63. “Consensus and tradition. There is liberty for evolution hence the rise of rabbinical Judaism and different denominations.”Ah! 2000 years of persecution, being kicked all around the globe without any central authority, but we have “consensus and tradition”!Aren’t Jews amazing? No doubt, coming to consensus on tradition was something to do during a pogrom, or to wile away the hours at camp til the showers opened.Ah, the infinite fungibility of Jewish identity!Actually, what is at the basis of Micheals contentions is what used to be called “seperate creation”.

  64. Fernando “Nunão” De Martini disse:“Os entusiastas de aviação e defesa e os pagadores de impostos têm o direito e o dever de levantar algumas questões.”Sem dúvida! E este espaço existe exatamente para debater questões.Como a Ágata 6 inclui a Base Aérea de Porto Velho, creio que os Mi-35 estejam entre os 10 helicópteros citados como participantes da mesma, ao menos operando a partir da BAPV. Fica a questão em aberto, realmente, sobre a necessidade de ter um par deles desdobrados na BACG ao menos para esta operação, e se isso foi possível. Não sei responder se estão, mas podemos perguntar.

  65. Obama aka Robin Hood. Robs from the rich, gives to the poor, steals from the poor…prancing about Sherwood Forest aka D.C.Here we go again. Obama is causing me to view him in terms of movies, cartoons, novels lol.

  66. Heej!håller med dig om danskar.. har tyvärr aldrig varit där, men skulle gärna vilja! det verkar så mysigt o avslappnat på nåt vis utirån bilder o reportage mm. lycka till med mattvalet:)tycker denna är finare än den förra:)kram camilla

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