sreda, 17. junij 2020

Kaj mi nihče ni povedal o obdobju po zdravljenju

Mineva 5 mesecev po koncu mojega zdravljenja. Spet imam lase, obrvi in trepalnice. Moji nohti se ne cepijo več. Prestala sem tudi prvi kontrolni pregled, kjer je bilo vse tako, kot sem si želela. Kljub temu pa se je v tem času nabralo nekaj misli in občutkov, ki jih nisem pričakovala. To je moje razmišljanje, v tem trenutku. Čez nekaj časa se bo spremenilo, tega sem se v zadnjem letu naučila. Prav tako to niso občutki vseh ljudi, ki so kdaj zaključili z zdravljenjem. Čeprav si predstavljam, da vseeno nisem tak special little snowflake in se najbrž lahko še kdo drug najde v mojih občutkih.

Med zdravljenjem nisem kaj dosti razmišljala o tem, kaj se bo zgodilo, ko bo terapij konec. Ko sem razmišljala o obdobju po zdravljenju, je bilo vse bolj ali manj samo en velik blur, za katerega nisem imela prav zares energije. Po koncu zdravljenja bo pa vse drugače. Ja no, not really.

Prva sprememba, za katero sem sicer vedela in jo pričakovala, je bila, da ni bilo več zdravnikov. Onkologinjo sem zadnjič videla januarja in "baj, se vidimo maja". Po mesecih rednih obiskov in tega, da ti nekdo vsak teden ali dva pojasni kaj se dogaja in če so tvoji stranski učinki normalen del zdravljenja, si prepuščen samemu sebi in svoji (ne)sposobnosti razlaganja izvidov in stranskih učinkov, ki se pojavijo po koncu zdravljenja. Manjka mi prisotnost nekoga, ki ve kaj se dogaja z mano iz medicinskega pogleda. Mislim da imam toliko pomislekov in vprašanj, da bi lahko šla z mojo onkologinjo vsak teden na kavo.

Moji stranski učinki so sicer zelo blagi, če jim sploh lahko tako rečemo. I am very lucky. Fizično vsak dan zmorem več, na kar sem res ponosna. Vendar pa se po zdravljenju spremeni marsikaj. Čutim vsak še tako majhen in nepomemben občutek v svojem telesu. Na prstu na nogi, glavi, srcu, trebuhu, wherever. Čutim vse, in to res močno. Pa to sploh niso bolečine (again, lucy me). Preden sem zbolela, sem najbrž te občutke podzavestno pospravila, ker mi niso bili pomembni. Sedaj pa je včasih prav naporno, ko se tako intenzivno zavedam svojega telesa. Čutim vsako najmanjšo spremembo, prepoznam lahko dvig pulza za le nekaj utripov/minuto.

Življenje po zdravljenju ne pride z navodili za uporabo. Čeprav bi bilo zame res koristno, da bi. Nihče ti natančno ne pove, kaj smeš in kaj ne. Vse je "kakor se počutite". Jaz se "počutim okej", ampak sem se tudi "počutila okej", pa se je izkazalo, da sem imela raka, tako da ne morem ravno računat na to, da je moj "okej" ravno okej. So much okej. Fizično se počutim boljše kot med zdravljenjem, tudi moji krvni izvidi so po več kot letu in pol ponovno normalni (I had a big happy tears cry about that). Proces ugotavljanja kaj, kdaj, kako in koliko zmorem, pa je zame naporen. Sploh, ker ga moraš ves čas nastavljati tudi na to, da napreduješ, ker se tvoje telo regenerira. Počivaj, ampak ne počivaj preveč. Bodi aktiven, ampak ne preveč. Lahko to, ampak ne preveč. Kaj je preveč, pa nihče ne pove.

Na koncu pa imam še svojega favorita- "Jaz ne vem kaj naj". To je najverjetneje bolj intenziven občutek za tiste, ki nas je diagnoza ujela nekje na pola puta. Nekje med faksom in službo, nekje med biotehnologijo, znanostjo in ekonomijo, nekje med odraslim in skoraj odraslim. Včasih imam občutek, da sem se zataknila v tem "nešto između", pa ne znam ne naprej, ne nazaj. V času zdravljenja sem sicer našla nove izzive in področja ki me zanimajo. Kar pa ne pomeni, da kaj lažje izbiram svojo nadaljnjo pot. To, da bo s časom prišlo nekaj pomislekov o tem, če je moja pot prava, sem pričakovala. Vendar pa me je razsežnost tega kar presenetila.

Če povzamem, rabim knjigo "How to post-cancer for dummies".

petek, 03. april 2020

Sam doma

Hej živjo! Kako kaj doma?

Dobrodošli v mojem svetu med zdravljenjem. Tako, približno. Jaz sem skakala in bežala stran, ko ste vi kihali in kašljali že jeseni in pozimi. Se jezila na starše, ki ne cepijo svojih otrok, in zaradi tega lahko ogrožajo mene. Na kavo noter nisem šla že woooohoooo časa. Ne rečem da sploh nisem šla na kavo, ampak je bil moj requirement da sedimo zunaj, mize so čim bolj narazen, če piha- še boljše. Zaloga mask in razkužil mi rešuje rit še danes.
Ker sem zaradi znanih razlogov iz samo-izolacije (karantene/social distancing ali kakorkoli že to imenujete), v zadnjih mesecih nabrala kar veliko izkušenj, z vami delim kakšen nasvet, namig ali pa zgolj nekaj besed, v katerih se morda nekdo najde. Or not.

Recimo temu, da smo bili vsi žrtve zelo intenzivnega in na trenutke paničnega začetka obdobja izolacije. Jaz pred meseci zaradi diagnoze, vi pa zato, ker se vam je podrl sistem življenja. V bistvu, če pomisliš, nekaj podobnega. Noben ni ravno planiral tega. 
Moja prva reakcija je bila "Okej. Zdaj imam pa res čas in bom naredila vse stvari, ki sem jih morda prelagala že več časa.". Haha... Nope. Na začetku so mi misli uhajale povsod drugam kot pa k stvarem, ki sem si jih tako zelo optimistično zastavila. Kaj bo, kako bo, zakaj, kdaj, kam... Kup racionalnih in zraven tudi povsem neracionalnih strahov mi je delal družbo več tednov. Bila sem slabe volje, živčna, nezainteresirana in utrujena. Kar naenkrat toliko stvari ni bilo več odvisnih od mene, od tega kako se potrudim, koliko delam. Izgubila sem kontrolo nad svojim življenjem, kot sem je bila vajena. Kot človek z veliko potrebo po notranjem nadzoru, je bilo priznanje in sprejetje tega zame ena izmed težjih stvari. Do te ugotovitve sem seveda prišla šele čez par mesecev. Tako da evo, bližnjica za vas.
Trenutno lahko naredimo veliko že s tem, da ostanemo doma. In dejmo bit face, pa ostat doma. Nič ne boli, da si doma. Vsaj realno te ne. Nihče ne trdi da je prijetno, ampak bo minilo. Pa umivaj si roke. Hvala. Sej ni tko težko.

Bili so dnevi, ko sem pojedla zdrav zajtrk, sčistila kopalnico, napisala nekaj za magistrsko, skuhala kosilo, telovadila, pospravila cunje in v glavnem bila naravnost čudovita gospodinja in zraven še študentka in še zaposlena. Teh dni res ni bilo veliko. Res. Mogoče za eno roko. Veliko več je bilo dni, ko sem uspela prvič kaj pojesti ob 11-ih. Pa dni, ko sem do takrat ko je Simon prišel iz službe imela že 2 počitka pod kapo. Ogromno je bilo dni, ki sem jih prečepela na kavču z Youtube videi, ker se mi je zdelo še 50 minut za en del serije preveč obvezujočih. Pa tukaj ne govorim o dnevih, ko sem se fizično počutila tako slabo, da sem bila itak čevap v postelji. Vsi imamo take in drugačne dneve. 

Ko si kar naenkrat ves čas doma, se moraš na to navaditi. Fino je, če razumeš, da ne rabiš odkrit gravitacije, samo zato ker je pandemija. Da ni treba, da narediš več, kot bi v službi. Da lahko delaš stvari bolj počasi. Da lahko pospraviš celo stanovanje, hišo, klet, lopo ipd., lahko pa pač gledaš serije (svaka čast za tak commitment!). Da je čisto dovolj, če uspeš poskrbet za svoje fiziološke potrebe in preguraš čez dan.
Ampak da ne boste ves čas samo čevapirali, imam jaz en sneaky sneak namig, ki je zame (na trenutke) deloval. Hrana. Načeloma vsi jemo vsak dan. Jaz še ne vem kaj bi se mi moralo zgoditi, da ne bi jedla cel dan. Torej. Ker smo doma, moramo jesti kar si sami skuhamo (to je bolj ali manj res, če hočeš way out, ga itak lahko vedno najdeš). In to sem jaz počela. Vsaj skuhala sem. Ni treba bit ravno vrhunski kuhar, da uspeš vrečt skupaj makarone/riž in nekaj. Zame je kuhanje res oblika sprostitve, obenem se umirim, pa še kosilo imam. Double kill. Če hočete triple kill pa je najboljša taktika kakšen neoluščen riž. Ker itak tako dolgo traja da se skuha, da se splača vmes še pomit posodo od včeraj. Ali pa pač od zajtrka, če ste vestni in snažni ljudje.

Ko sem bila sama doma, sem veliko časa preživela v svoji glavi. Res sem imela veliko časa da si napletem vse možne scenarije, alternative, raznorazna mnenja, nasvete itn. Za tematiko raka je najbrž zdajle na voljo približno ista količina informacij, kot za tole korono. Več kot sem prebrala, slabše je bilo. Ljudje, ki ne smejo imeti mnenj o znanstvenih in strokovnih tematikah, ga imajo. Svoboda govora vse lepo in prav, ampak ne. Ko je mene strah, sem dovzetna za vse vrste traparij, ki jih raznoliki posamezniki objavljajo širom svetovnega spleta. Pa res verjamem, da nisem edina. Kar naenkrat več ne veš kaj je prav in kaj narobe, kako se vse to poravna s tvojimi vrednotami in tvojim znanjem. Kot nekdo, ki ima en naravoslovni faks, na poti pa še enega, gre tole res težko iz tipk... Ampak za vaše dobro: "Ignorance is a bliss.". Včasih je pač bolj pametno ne vedet. Kar ne veš, ne boli. To ne paše čist čist, ampak close enough. Itak je oblast pokazala zmožnost, da nam napiše sms, če je res treba. Osebno poskušam spremljati samo uradne informacije, pa še te moram dat čez moj filter pravilnosti uporabe statističnih metod in relevantnosti predstavljenih podatkov. Ker včasih me boli glava in srce, ko prebiram nebuloze. Sem pa zvesta spremljevalka Good News Movement- priporočam! Teh novic pa ni nikoli preveč!

V tem času ne pozabite na soljudi. Meni je bilo med zdravljenjem včasih dolgčas, ker so imeli ljudje vedno toliko dela. Zdaj nas je večina veliko bolj prostih. Pokličite družino, prijatelje, sorodnike, sodelavce,... Nekoga. Če vam bolj ustrezajo kanali družabnih omrežij, tudi to deluje. Ko smo fizično izolirani, je včasih še lažje najti bližino. Jaz priporočam da se igrate namizne igre. Zame je to odklop in zabava, pa še druženje z ljudmi, ki ne živijo z mano. Res, probajte!

Na koncu bi rekla še to: "Ne bo trajalo večno.". Vsaj pandemija ne. Bo življenje po izolaciji drugače? Bo. Ampak v tem trenutku ne vemo kako, ne glede na to, kako pametujemo. Optimizem pa vseeno šteje!


Ostanite doma in bodite zdravi.

ponedeljek, 06. januar 2020

Kako pa to deluje


Preden sem začela z zdravljenjem je bila ena izmed največjih neznank, kako izgleda kemoterapija. Kaj to sploh je? Kako izgleda…? Ali boli?

V prvi vrsti moram povedati, da ima vsak bolnik z rakom svojo vrsto terapije, glede na vrsto raka, in da moja najverjetneje ni enaka drugim. Vsak ima svojo izkušnjo, jaz zgolj delim mojo.

Kemoterapije sem imela na 14 dni, vmes je bil čas za počitek. Prve kemoterapije sem dobila naravnost v žilo, preko infuzije, kasneje pa sem dobila lasten priključek – PICC kateter, zaradi katerega je bilo vse skupaj veliko lažje in manj boleče. Dan kemoterapije se je po navadi začel okoli sedme ure zjutraj na Onkološkem inštitutu v Ljubljani, kjer sem se prifočkala v sprejemni pisarni, ter nadaljevala s postanki- najprej oddaš kri, da preverijo, če je dovolj dobra in si sploh pripravljen na naslednjo kemoterapijo. Pregledajo predvsem imunski sistem, da nisi bošček brez imunskega sistema.

Kri lahko daš v laboratoriju, kjer ti jo vzamejo, enako kot drugje, iz žile. Kri pa lahko oddaš tudi v Mali ambulanti (stavba kjer je ambulantna kemoterapija), kjer ti lahko vzamejo kri iz katetra. Če imaš PICC (ali VAP) priporočam malo ambulanto, ker  žile, po nekaj rundah kemoterapije, dobijo neko posebno fobijo pred iglami. Jaz jih komaj prepričam da se pokažejo v zdravstvenem domu, ko hodim na kontrolo krvi med kemoterapijami, zato jim poskušam prišparat vsaj kakšno luknjo.

Nato grem na prevez PICC katetra, kar jaz opravljam kar na onkološkem inštitutu. Tukaj moram dati res veliko pohvalo za vse zaposlene na kirurškem oddelku, za vso potrpežljivost in prijaznost, ter poskuse izboljšav pri mojih flajštrih za kateter.
Ko imam previt kateter, je včasih čas še za eno kavico. Preden sem imela PICC kateter, sem imela dovolj časa za kratek zajtrk in kavico v bližnjem Rog-u. Potem ko sem dobila PICC, pa sva se s Simonom morala zadovoljiti z zadnjo »dobro-se-počutim kavo« v avli Inštituta. Dala sm kri, prevezala kateter in končno nekaj pojedla. Sicer mislim da ne rabim priti tešča na odvzem krvi, ampak je prezgodaj da bi že pojedla zajtrk doma.

Da naravnam ure – zdaj je približno okoli devetih. Počasi odcapljava v prvo nadstropje proti mojemu oddelku. Vedno grem po stopnicah, čeprav grem zadnje čase že malo težje, ter sem do vrha že zadihana. Jaz se počutim bolj močno, ko mi to uspe. Taka mala tolažba, da nisem še za v koš. Ponavadi tam počakam na svojo onkologijo. Včasih v tem času uspeš pozdraviti in pokramljati z kakšnim znanim obrazom, ali pa se samo nasmehneš punci, ki je tam več kot očitno prvič. Držim pesti! Nikjer ni »srečno«, tako iskren pozdrav kot med ljudmi na Onkološkem.
Po nič do nekaj ur čakanja dočakam svojo onkologinjo, s katero se pogovorim kako je bilo v zadnjem ciklu, o stranskih učinkih, kakšna je moja kri… Postavim ji vsa mogoča, smiselna in manj smiselna vprašanja, kot so npr.:
-        Imam črno piko na prstu na nogi,
-        Nohti se mi cepijo?
-        Imam visok pulz
-        Zakaj imam lase?
-        Tiščanje v prsnici?
-        Zakaj moram imeti menstruacijo?
-        Lahko jem pršut?
-        Lahko grem na kuhančka?
-        Lahko jem biftek?

Če razmišljaš o poklicu onkologa, verjamem, da boš ob takšnih vprašanjih ponovno premislil/a. To je le nekaj izbranih vprašanj, izmed vseh, ki so mi v času zdravljenja padla na pamet, ter se je z njimi morala spoprijeti moja onkologinja. Svaka čast za potrpežljivost.

Po kliničnem pregledu dobim velik papir s seznamom zdravil za mojo kemoterapijo in zdravil za lajšanje stranskih učinkov le-te. S tem se odpravim na ambulantno kemoterapijo, kjer prejmem svojo tokratno dozo.

Temu delu kemo-dneva jaz pravim železniška postaja. Kajti prvič, ko sem prišla sem bila zares pretresena nad številom ljudi in hitrosti menjavanja pacientov na »posteljah«. Po navadi moram čakati na vrsto eno do dve uri. Potem pa mi medicinske sestre dodelijo »posteljo« ali stol, v kateri prebijem nadaljnje dve do tri in pol ure. Od česa je odvisno trajanje kemoterapije mi še vedno ni jasno, ker vsakič dobim isto kemoterapijo, čas pa je vsakič drugačen. Mistery. Ko zaključim z kemoterapijami, grem na wc, ker mi je zelo neudobno hoditi tja z mojim stojalom Alvinom, in ponavadi probam čimprej priti domov. Na začetku zdravljenja sem bila po kemoterapiji še zelo živahna, sedaj, proti koncu zdravljenja, pa sem po kemoterapiji že zelo bleda, ter takoj ko pridem domov naredim post-kemo spanec, v upanju, da čimprej mine.

četrtek, 21. november 2019

The day I "lost" my hair


For most cancer patients, especially women, this is one of the hardest things they have to deal with regarding side effects of cancer treatment. The health insurance in Slovenia does offer a certain amount of money for patient’s wigs, I think it is around 80€. It is a very nice help, since I noticed that a lot of people feel very uncomfortable wearing only beanies or scarfs. But for me it wasn’t like that.

What I did regarding my hair?

The day I got my diagnosis, my oncologist also told me that I will be losing my hair very soon after I start with my chemotherapies. I didn’t really feel sad because I am really not that emotionally attached to the way my hair looks. For most of my life I had quite short hair. I do have very thick hair and at the time I was growing them longer, to be able to make a nice hairstyle for my wedding. Ha ha, not happening.

First thing I did was to buy a shaver off of Amazon, because we didn’t have any at home. Then I was waiting for my hair to start falling out.
By the way, the hair loss doesn’t happen because you have cancer but because of the cytostatics, the drugs you get during chemotherapy. The cytostatics attack the rapidly dividing cells, which are mainly cancer cells. But it does not target cancer cells specifically, so all cells in the body which are rapidly dividing are affected. And the cells in our hair roots are one of the most rapidly dividing cells in our body - hence the hair loss.

So, it was Friday at the end of August, after my first chemo. It was hot and I had long hair. That Friday I started to feel that my hair is just not that strongly attached to my head anymore. When I was running my fingers through my hair, every time I pulled a good amount of hair out. So, I decided that that is it and my hair had to go. I didn’t want to have ten lonely hairs hanging out of my head and look desperate and even more sick than I actually am or feel. And I secretly wanted to shave my hair from the beginning of my treatment anyway. I found it really fun. It was my unfulfilled wish from my crazier teenage years and this time, my parents couldn't really be angry with me. I was so happy to shave my head, you cannot imagine the excitement I felt.
I waited for Simon to come home to help me with the shaving. And so, the shaving begun.


First, I just cut off my ponytail, to make things easier. So far so good.














Secondly, I cut my hair a bit more because it was still quite long.

Then I went in with my new shaver. And here is when the things went south. As I mentioned, I have very thick hair. And do not let the Hollywood movies trick you- shavers are not that strong! I learned that the hard way. I was always imagining how I will be shaving my hair and the hair will be falling on my bathroom floor and I will shed a tear and you know… Movie style. Well, that didn’t happen.




My poor shaver could not handle the amount of hair on my head. I tried and the shaver tried, and Simon tried, but we all failed. So, there I was on Friday night, looking very flattering with my hairstyle made with regular scissors. Pictures are attached for your entertainment. I am aware of how flattering they make me look.





















Because this hairstyle was a bit embarrassing even for me, I had to go to hairdresser. Simon called the one near us and explained the situation, while I was giggly admiring the art work I made with my hair. The hairdresser miraculously had time to squeeze me in and in half an hour I was sitting in the hair salon.

The hairdresser made me a coffee and shaved my hair as it should be done. I think that she was expecting a bit of crying from my end. Didn’t happen. I found my hair shaving process very entertaining. The hairdresser complemented the shape of my head because apparently that is a fear of people in my types of situations. But she was really sweet and kind and I got my hair-no hair treatment for free.

Epilogue

For a few weeks I was shaving my head every week or so, because my hair kept growing back. And then I gave up on shaving. I still have hair! They might be a bit thinning, but I can still easily pull the “I have short hair” hairstyle and not look sick.

Sometimes I am contemplating if I rushed into shaving my head because I was so excited. But I tell myself that if I would keep them long, they would fallen out even more.

Present

It is winter and I am cold, my head is freezing most of the time. I just spent too much on indoor beanies. And I have newly found respect for my bold friends.


sobota, 21. september 2019

A basket of eggs

I am sitting in the waiting room with Simon and shortly after receive the results from my doctor number 1. She is young, very understanding and patient, however she informs me of my diagnosis as if I already knew what I have. It is true that the results are not really a surprise. Hodgkin's lymphoma and something something something. I do shed a few tears while wondering why I am even crying, as this is really not unexpected, and I already kind of got to terms with having cancer. The doctor explains how she would proceed, and we arrange for my egg cells to be frozen before starting treatment. She schedules the appointment in the gynecology clinic for tomorrow morning.


***
It's the next morning and we arrive to the gynecology clinic. First, we meet with a gynecologist who explains what is going to happen and what our options even are. We need to decide between freezing my egg cells or freezing our embryos. To all honesty, I didn't do much research. I was mentally and emotionally tired at this point and didn't have the strength to read scientific, or any kind of articles about the differences, pros and cons of both options. The doctor recommended the egg cells, so we decided to do that.
After the explanation of the following procedure, which I was about to start, I found myself signing the papers for the in vitro fertilization and getting instructions on how to properly use manual injections to take my medicine.
I did all the stabbing myself and handled two to three injections per day to get my eggs big enough to be taken out and preserved for an uncertain future.


***
It was the beginning of August and I felt pretty awful about the fact that this whole thing was getting in the way of me going on my first proper vacation. So important, right? Ever since I was told by my doctors that a road trip in the middle of August is not really the best idea I ever had, I still wanted to go for SOMETHING. Simon was already working the entire year and did not really have a real holiday, and now I was ruining it all. And may I remind you, at this point, I still feel completely normal. Nothing really hurts, I can do everything that I want, I can work, ladada.
Because the treatment was about to begin, and because it was supposed to be intense, we decided to take the last Ana-can-go-wherever weekend off and we went on a trip to Italy. I only felt comfortable going so far away that I could still get to hospital in Slovenia, if anything would go sideways. I packed my stash of injections and asked our hotel if they have a fridge, to put my injections in, and then we were good to go.

***
We went to the beach. Our beach story: paid way too much money for 9th row on a beach that was, funny enough, called "Austrian beach". You probably get the picture of the wild, natural and not crowded beach. Oh, and I could not even swim!
Spend the two days like that, working on hatching my eggs and relaxing, then headed home.


***
I had a few ultrasound procedures during the next days. The gynecologist was checking if my eggs are hatched (btw, I know I don't hatch eggs, it's just what I called this process to make it more fun) and ready to be frozen. She was always dictating some numbers to the nurse; usually around ten and up. At first, I didn't know what those numbers are... But then I asked. She was describing the size of my egg cells. "Hmm, yeah sure you do. But what units are you talking about?". She said millimeters. And I was confused as where are all this numbers would be located inside of me. Surprised and confused.


***
I think it was day 10 after starting this hormonal therapy, that I was ready to get my egg cells frozen. The procedure was kinda funny to me.
I got to the hospital in the morning and got directed to change into nothing but the giant hospital gown. It was the kind of gown that is probably used for giving actual birth, since it was ginormous on me, and I am not really a skinny person. It made me a bit sad, since I knew that this gown is not gonna be worn by me for its real purpose for quite some time, if ever. To continue, there was me in a pregnant-person gown. Thereafter I was directed to wait in the waiting room. I must admit I felt quite weird, sitting in nothing but the gown with Simon in the waiting room. This waiting room was like... a real waiting room. At the beginning of my gynecology-clinic treatment, this waiting room was shown to me as "you can wait here while we deal with other patients" room.
After that, Simon had to go to work and I stayed in this waiting room until being picked up by a nurse. She instructed me to go to the toilet and then come to the surgery room. Did you ever walk into your own surgery by yourself? It is the funniest feeling, especially because I was completely stoned in a few minutes. I got this very amusing thing - analgesia, which is insensibility to pain without loss of consciousness. I did my fair share of surgeries in my life, but I could not understand what the nurses and doctors were describing before I actually felt this.
I think I didn't walk out of the surgery room on my own, or I just don't remember it.
After that I was told that we got a nice basket of my eggs and the procedure was successful. In a few hours, my sister picked me up from the hospital and that was basically it. I was in and out in five to six hours.


***
I do view this in vitro fertilization process as a very nice support, one less thing I have to (or more, "can") worry about during this mess. And at the end of the day, if I ever have kids from these eggs, it will be like I had them when I was 26 ;)
Now... back to the start of my real treatment.
  

četrtek, 05. september 2019

Spoiler alert!


12/7/2019
Here I am, at the Institute of Oncology at 6.30 in the morning, waiting. I don’t really know how all this happened and how I ended up here. I am waiting for surgery where they will remove my retarded lymph node, which is suspect. I still hope that the person diagnosing the punction sample made a mistake, but my mind is not occupied by that. I don’t really feel nervous or scared. I… nothing, just want to get this surgery done so I can go home in the evening.
Simon is accompanying me to the hospital and as I am taken to my room, we meet his cousin, who is a nurse at the institute. She is taken by surprise as what are we doing there but gets the picture quite fast. And I am very happy to have her there. It makes me feel safer although I don’t really know her all that well. She helps me get ready, brings me my stuff to change into and explains the further plan for today.
After Simon leaves for work I lay in the bed and wait for my turn in the surgery room. My roomies are not my age and I can hardly understand anything they are saying. They don’t look extremely healthy and it is (very selfish) making me uncomfortable. As I am dressed in a hospital pyjama and put into hospital bed, I tend to feel sick and I hate that. All I am trying to think in my head is that I am a completely healthy individual, which accidentally ended up in dotty hospital pyjamas. A terrible mistake, which I will gladly forgive, after they do the surgery and find out I am healthy and I can go back to my normal life.
I wake up from anaesthesia somewhere around 1PM in a “wake-up room”. I have no idea what happened, and I am in no pain. I do feel a bit dizzy and a bit sleepy, somehow remotely familiar to my crazy student party nights. All of the sudden, I realize that I am crying. I woke up to crying my eyes out, completely unable to stop that from happening. I think that a nurse brought me some tissues, which I didn’t really wanted to use since I felt that that is not eco-friendly, and I might as well use my hands and blanket to wipe away the tears.
Nurses didn’t really care about me for about an hour. Then one of them came up to me and asked me how I am feeling. I answered (no idea what) and she was obviously satisfied with the answer, because I was then taken back to the department. But before I left, I was somehow surprised by nurse’s statement that I finally said something that actually made sense and that she could understand. Like… “What? I speak completely clear and distinct, don’t know what your problem is missy”. Apparently after waking up after anaesthesia, your mind and your body are not completely connected right away.
I spend the afternoon trying to get normal, sober and “not” stoned by the drugs I have been given, so I could go home the same day. Me leaving the hospital today should probably be up for a discussion (because I was feeling quite weird still), but I have some acting skills and by accident the doctor came by just when I was stuffing my face with Bolognese, a.k.a. diner, as I was hungry as hell. He was probably (and completely rightly so) assuming that a girl with such appetite is definitely ready to go home.


13-17/7/2019
Nothing really happened. I was being increasingly nervous because I hate waiting. I was trying to face the fact that I have cancer while at the same time still clinging to the hope of not having it. Trying to rationalise the situation by telling myself that no positive nor negative thinking will change the results. What is done is done.
And of course, I was trying to offer emotional support to my friends and family who were far more worried than I was.


18/7/2019
“Good day, nurse something here. Am I speaking to Ana?”
“Yes, please.”
“The results from the biopsy are finished. Please come in on 23rd of July around 10AM.”
“Sure! What are the results?”
“Sorry, I am not allowed to tell you that.”
Gee, thanks for the help. Advise to all the nurses that must do this ridiculous job of telling there are results and not saying what they are- lie. Just say that results will be done by 23rd of July and that I should get there on that day. Will be easier for everyone.

sreda, 28. avgust 2019

The begining


26/6/2019
It's something to 9AM and I am sitting in the waiting room. Not really feeling nervous for the ultrasound that I am about to get done, but more annoyed by the time that this appointment is taking from my working day. I must be in a meeting at 10.30. I need about 5 minutes to get to my car, which I got just two days ago (solely for the purpose of taking me from home to work, because public transport is just awful). GoogleMaps tells me that I will need 13 minutes to get to my meeting. That makes, let’s say… 20 minutes of travel time. So, I need to leave this hospital at 10.10 at last, even better before that, so I can find a parking spot in peace. In the waiting room I see two more women that will probably go in before me. Based on my observations, average time of a check-up is about 15 to 20 minutes. Going over the calculation in my head, I should still be able to make it to my meeting on time.
Going in with my head already a hour ahead in the meeting, I say “hello” to the doctor. He is honestly surprised by my so called “bad manners” for not greeting him properly. His weird over-reaction to my “hello” gets me out of the job-thinking and puts me and my mind into the clinic. He checks my breasts, and everything seems fine. Now is the time for me to mention the little lump that I found last week, just above my collarbone. It doesn’t seem dangerous because it doesn’t hurt, I can even move it around a bit, so it is kinda fun to me. But you know, just in case…
Doctor checks the extra thingy that I have, and he doesn’t look to happy about it. He decides to puncture it to further diagnose what is going on.
I am quite confused, but still thinking that it might be just a weird reaction of my lymph nodes to the mononucleosis that I was getting over in the beginning of this year. A body can react weird to something and everything could still be okay. But I realized that I was set to spend the day at the hospital, so I had to cancel my meeting and everything else that I planned to do on this day.
My day continued with some blood-taking, lung x-ray, doctor meetings, more blood-taking and a lot of waiting in between. My blood tests came back weird, showing that I was quite sick. I was even more confused. The x-ray showed that I have pneumonia. I went along with this diagnosis, making me quite happy and satisfied since it can also explain my lump in the lymph node, with the inflammation and stuff. For the time, I am not thinking of any other options. I mean… pneumonia- not great, not terrible.
I finish my day at the infection clinic, where they still work on my pneumonia and bad blood results, yet they don’t really find anything interesting.
On the top of this amazing day, I now feel that I have to tell my parents about the inconvenience that is happening. I didn’t want to mention breast ultrasound because I didn’t want to upset them without need. Now it might be the time to do so. They are definitely not happy when I share the news and I can hear the worry in their voices. I can certainly understand them, but I try not to think of the worst possible outcomes of this situation.
All in all, this is the day that I came in healthy and got out with pneumonia and cancer.



28/6/2019
I go to work although I am advised not to, because of the suspected pneumonia. I still don’t feel sick or something relating to sickness, so after a day off I decided that I am capable of working and go to work. I also kinda have to be there since my boss is going on vacation and we need to make me a plan of work for the following days. At this time, I am working at this company for exactly one month. I really enjoy working and I am looking forward to what I will be doing on my own for the next two weeks. It is my first serious job. Although I work as a student for now, I have a good feeling that they would hire me, and I could continue with what I do. It is really a great first job and I am very happy and excited. I hope I can prove myself in the next two weeks so that they see that I am able to work on my own as well.
Work goes according to plan, but I do start to feel a bit tired at the end of the working day. I might be finally getting sick? Probably.
In the evening, me and Simon meet with our friends to whom we need to hand out one of the last wedding invitations. It’s Friday night and guys are quite in a good mood, telling stories about their single-guys summer time. It is fun, but at the time I am getting more and more sick. I feel so bad that I actually order tea on a hot summer night.


1/7/2019
Over the weekend I was feeling completely crapy, apparently my pneumonia caught up with me. I had a bit of fever but by Monday morning, that was mostly gone. Still I called to work that I will be on sick leave today and went to the doctor.
At the doctor, there was more blood-taking. The results were a lot worse than last week, so I got antibiotics and went home to rest.
Rest didn’t last long. I got a call from my doctor from last week. It was one of the most weird and confusing calls I ever got, including awkward teenage-boyfriend calls. They got back the results from the punction and the sample is suspicious for Hodgking lymphoma.
It hit me and I wasn’t prepared for that. At least to hear it over the phone. I might have a cancer. Hm.
As a Master of Biotechnology, I of course clinged to the word “suspicious”. My more analytically programmed mind didn’t accept the suspect to be the real thing. Anyone can be wrong when they look under the microscope. And I was hoping that my poor sample was treated by the most incompetent and foolish cytologist there is on the planet, and that he or she made a terrible mistake. Can happen to everyone, and I hope it happened to them with my sample.

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