User:Mara the Marine Marauder/Mara's Diary

Warning
This page containes stuff related to sickness and preparing for death. If you don't want to read about such things, please don't read it!

About
This is Mara the Marine Marauder's diary. It's real, not fictional. I got diagnosed with a tumor, and it is possible/probable that I will die from it, and I'm trying to prepare for that situation. I'll write down only the things related to that topic here, not other things that also happen in my life. Months ago (and with no idea this would happen to me), I created (or, more precisely, took over and renamed) the Ghost Ship guild (which has its own wiki guild page). I think this diary fits right into the topic and might help readers (who are hopefully not, or not yet, in such a situation) to think about what they can already do to prepare for their own death (which is hopefully a long time away - but you never know).

There are also two threads in my wiki blog related to the diary:
 * Diary Discussions is for sharing information (questions, advice, discussions) about the topic. (Things like "How can I become a body donor in Germany?", "Which data do banks want to know when making bank mandates for next of kin?") But, of course, you can also write about these things in the Ghost Ship guild in HabitRPG!
 * Already Too Old to Die Young? is for not-so-matter-of-fact comments (well wishes, ill wishes ;>, etc.).

Before

 * Went to the usual medical checkups regularly (last one for breast cancer was in September).
 * Became an organ donor.
 * Tried to become a body donor, found out I'd have to be at least 50 to apply as donor at the nearest medical university, decided to wait.
 * Tried to make a will. Googled and read a lot, found the details so complicated that I gave up in frustration.

2015 May 31, Sunday

 * Found big breast tumor by palpation. Would probably have found it months earlier if I'd done this regularly. There was a good cancer detection challenge in HabitRPG (including monthy palpation and regular medical checks) when I first wrote this. Now it's gone, maybe someone could make a new one? If you do or find one, please put the link into the Diary Discussions blog.

2015 June 01, Monday

 * Went to gynecologist. Ultrasonography. Looks big and malign. Doctor found metastasis in lymph node. Doctor prescribed mammograpy and biopsy and said it's possible that surgery will be next week (and then chemo), or the other way round, depending on results.
 * Asked in Ghost Ship guild who wants to maintain the "I am an organ donor!" challenges in the future.

2015 June 02, Tuesday

 * Went to radiologist for mammography.
 * Canceled membership in an organization which automatically withdraws membership fees from my bank account. (I'd been thinking about doing that anyway.)
 * Tried to become a body donor. Found link list for anatomic institutes in Germany (dated 2006). Googled, read, phoned, emailed a lot. It turned out that it's difficult because they are very picky. They have different rules, but many will:ask you to pay part of the costs (some are for free, though, e.g. Heidelberg, Berlin, Institute for Plastination)refuse if they aren't the anatomic institute closest to your home,refuse if you're under 50 - even if you're terminally ill,refuse if the body is "damaged" by surgery, organ donation, autopsy, injuries, decay, ...refuse if you have contagious diseases,refuse if your next of kin object,refuse if your next of kin object,and probably several other reasons I forgot. Only the Institute for Plastination takes (almost) everyone without cost. They are famous for their public exhibitions of anatomical specimens, but their main business is making anatomical specimens for medical universities etc. You can specify that you don't want your specimens to be in public exhibitions (and a lot of other things). I asked them to send me the forms.

2015 June 03, Wednesday
Asked if it is possible to just prepare them and have them signed by them after my death. No, it's not. Filled them out. Noticed I'm not sure about my mother's official place of birth, phoned and asked under some pretext. Sent forms to parents for signing, with instructions. (One must be sent to bank with copy of ID card, the other most be brought to the local branch of the bank.)
 * Went to clinic for biopsy (plus more ultrasonography with same results). Will get biopsy results in a week.
 * Asked if clinic has WLAN. It doesn't.
 * Got information about and forms for bank mandate for next of kin (parents, in my case) for my bank accounts.
 * Told parents. Told them to get something to write, get both parents to the phone, put the phone on loud, and both sit down. Agreed to visit them over the weekend.
 * Got train tickets to visit parents.

2015 June 04, Thursday

 * Caught up on household chores. Lots of laundry, so I have clothes for visit to parents and hospital stay.
 * Parents phoned, I asked my father if he could help me by reading up on how to make a valid will. (Also, if by accident they die before me, I want their stuff - which I would inherit then - to go to whoever they want to - and I don't know who that is.)

2015 June 05, Friday

 * Started this diary (after checking with admin).

2015 June 06, Saturday

 * Packed, took train to visit parents.

2015 June 07, Sunday

 * Tried to write a valid testament, advance health care directive, and health care proxy/power of attorney (German "Vorsorgevollmacht" - so my parents can, just for example, immediately give notice to my landlord after my death or if I won't get out of the hospital anymore, or tell the post office to redirect my snailmail to them for a few weeks after my death). Didn't succeed yet - it's complicated! - but read a lot of info.
 * Talked with parents about things like advance health care directive, testament, organ and body donation, etc.
 * Spent quality time with parents.

2015 June 08, Monday

 * Got the testament finished.
 * Read more info about advance health care directive and health care proxy/power of attorney.
 * Spent more quality time with parents.
 * Took train back home.

2015 June 09, Tuesday

 * Phoned Institute for Plastination again because forms haven't arrived yet. (They'd told me last time they are currently changing the forms, they won't send the old ones anymore and the new ones are in print - but they'd hoped they could still arrive until today.) Forms are still in print and will still be sent to me asap - but if my surgery is within the next few days, they will probably arrive too late. There is practically no way to make a body donation without the forms. (For example, I can't give my parents power of attorney to agree for me after my death.)
 * Asked at Institute for Plastination which papers they will need after my death - they will need something called "Sterbeurkunde" in German. (No, it doesn't simply translate to death certificate! More below.)
 * Found out how to get a "Sterbeurkunde": There's something called "Totenschein" (death certificate) written by the doctor who declares a person dead. It's a more medical document including things like the reason of death.Then there's the "Sterbeurkunde" (often also translated as death certificate) issued by the civil registry office. It's a more bureaucratic paper that basically just states that the person died (and when). It is used in most matters of inheritance, administration and business. The civil registry office writes the "Sterbeurkunde" after they've seen the "Totenschein" death certificate - and also the birth certificate of the deceased person. The "Totenschein" is often sent there directly by the hospital or doctor. The birth certificate usually has to be brought by either the next of kin or the mortician (who gets it from the next of kin). The birth certificate must be the original, you can't make officially certified copies of birth certificates. Nor is it possible to bring the birth certificate in advance and ask the civil registry office to file a note that they've seen it if you expect to die soon. If the birth certificate can't be found, the civil registry office at the place of birth has to be contacted to certify the birth of the deceased.
 * Looked for my certificate of birth. Found it. Phoned parents to tell them where it is.
 * Should have continued advance health care directive, and should have started packing/planning for hospital stay, but procrastinated. :(
 * Handed over all the necessary info for organ donor challenge maintenance to @Cantras who will run them from now on.

2015 June 10, Wednesday

 * Appointment at the clinic. It's official now, it's cancer (a highly aggressive form), the changed lymph node is a metastasis. The doctors decided to first do chemotherapy, then surgery, then radiation therapy. They'll also do both a genetic test (if I have a certain "cancer gene", the chemotherapy medication cocktail will be slightly different) and a thorough screening for metastases in liver, bones, and lung (I think). Chemo will be 18-24 weeks. (I had no idea the operation is usually postponed that long if chemo is done first.) A medical port will be surgically implanted to deliver the chemo drugs. I'll be an outpatient for everything but the operation itself. I'll be on sick leave for 9 months at the least.
 * Phoned geneticist to get appointment for testing. (If it wasn't urgent, that would take months! But I'm classified "urgent" and will have one within days.) No office hours today. Left message.
 * Phoned parents.
 * Tried to make sick leave official with employer, couldn't get through on the phone. They'll call me back.
 * Phoned health insurance. I thought it would be a minor matter (about copayment and such). I don't want to go into details about my status of employment and health insurance - but it turned out that I'd completely forgotten that both status of employment and status of health insurance changed yesterday (I'd completed the paperwork for that weeks ago before I knew about the tumor), but it shouldn't have because the tumor was already diagnosed before yesterday. The insurance premium I have to pay as well as part of my income now depend on how this is handled. I'd thought the gynecologist had already sent in my sick report, but apparently that was a misunderstanding and she hadn't. Now I need the sick report, dated back to June 1 (or at least to 3 days before today - health insurance told me that's the most doctors can do), faxed asap to health insurance and to employer, hoping that they'll still acknowledge it. Got fax numbers. Called gynecologist - no office hours today. Called clinic - no office hours, only answering machine, except for the emergency number which I didn't want to call. Tried to call employer again, got only answering machine. Grabbed two documents with fax numbers of health insurance and employer in a hurry (I don't even know which ones), stuffed them into backpack, biked to clinic, went to secretary. My doctor at the clinic was no longer there today, but I got hold of the secretary. No, she can't do anything without the doctor. Besides, the sick report should come from the gynecologist, I should phone them tomorrow. Biked home again. Wanted to take out the two documents from backpack and put them back into the ring binders (one ring binder still open and with open clasps), but couldn't find them. Searched everything thoroughly three times. Biked back to clinic to ask if I left the papers there. Secretary gone, office locked. Lady at reception desk wouldn't unlock it and look, but told me the office opening time tomorrow, as well as the exact phone number (a different one than I'd thought).
 * It's 19:30 now. I'd really like to have breakfast. Fridge contains a bit of leftover tomato soup, an apricot and nothing else. Will go shopping. Will refuse to be eaten by paperwork. Getting eaten by cancer is ok, cancer is at least a sea animal.
 * (After shopping and eating:) Made detailed schedule for "phone battle" tomorrow morning. (The clinic will phone me, too, to tell me when the first chemo appointment will be.) Wrote detailed emails to gynecologist and employer, so they'll have most of the info already.

2015 June 11, Thursday

 * Started "phone marathon" at 07:15 AM. Notes I made yesterday evening and emails I sent in advance were a great help. Among other things, the people at the clinic told me the dates and times of the next few appointments (bone scintigraphy on Monday 08:00, getting informed about port implantation on Monday 11:00, several tests for metastases on Tuesday, port implantation on Friday). They told me to drive there and fetch a document with all the appointments scheduled so far. They also said I needed a letter of referral for bone scintigraphy from my general practitioner. And no, they hadn't found the documents I probably left there yesterday.
 * Phoned general practitioner - they said that must be an error, the letter of referral should come from the gynecologist. Emailed and phoned gynecologist.
 * At about 10:00 AM (I was still on the phone and in pyjamas), the geneticist called me back and said "If you come here right now within 20 minutes, I can test you. Otherwise, you'll have to wait for over a week - even though I put you in the "most urgent" category." Hopped into clothes and on bike, got there in time and got tested for cancer gene. This was only possible because I'd phoned the geneticist as early as possible (a few minutes before official office hours), phoned clinic to fax her the diagnosis immediately, and got chemo appointment times from clinic instead of waiting that they'd phone me. Geneticist asked about my grandparents and all their offspring (all generations) - known cases of cancer, age and cause of death (roughly). I was glad I knew most of it by heart. Geneticist said results probably won't be finished by the time chemo starts, but there will probably already be partial results - I should phone her before chemo, and she'll ask the lab.
 * Phone marathon continued. Did all the phone calls I could do without the sick report. The lady at the gynecologist's reception told me repeatedly the gynecologist will write it (and the letter of referral) asap but is too busy now. (Most likely true - they are already doing the best they can, and treating patients is more important than paperwork.) The lady at health insurance said they need the sick report by 18:00.
 * Downloaded all the information from an account having to do with employment which will be deleted soon.
 * Gynecologist finally called back about sick report. She'd dated it back to 03 June (day of biopsy - fine for me), and said she'd fax it to health insurance and employer within 20 minutes. She asked where the bone scintigraphy would be done exactly, so she could write the letter of referral. I wasn't sure, the clinic hadn't told me yet. I told her I'd try to find out, and maybe she could phone the clinic directly? Half an hour later, I wrote a message to my employer: Could he please confirm the sick note had arrived? Ten minutes later, gynecologist reception desk called back: They'd faxed the sick report to health insurance and tried to fax to employer, but the fax number didn't work and the phone number wasn't valid. I told them I'd verified the fax number from three different sources and phoned the phone number several times today. They said they'd check again and try a different phone number of the same employer. I phoned health insurance - the responsible person wasn't at her desk at the moment but would come back soon. The fax might or might not have arrived, it would take up to two hours until it would be visible on their computers. (Why?) I gave them my landline and mobile number (again, to make sure) and told them to please call me back before 18:00. (They didn't.)
 * Biked to clinic to fetch the appointment schedule. Was told there I should have come before 15:30 - there was only the receptionist for emergecies there now, who couldn't do anything. But she tried her best, looked into computer and paper files, didn't find the appointment schedule - but also didn't find the original letter of referral from the gynecologist to the clinic. Why? After waiting for half an hour so she could catch a doctor, they found out the original letters of referral had been wrong (they had been to individual clinic doctors instead of to the whole clinic), and I needed a new one. Oh, and of course they didn't know if any documents I might have forgotten there had been found.
 * Biked from clinic to gynecologist. Waited. Got sick report (the copy for myself) and letter of referral to clinic in general. Was told they'd successfully faxed the report to employer by now (they didn't tell me how), and they'd also phoned the clinic by now and been told that the letter of referral for bone scintigraphy should come from the general practitioner. They weren't sure if that was correct though because they'd only talked to the receptionist for emergencies.
 * Biked from gynecologist to general practitioner. Got in there at the last minute possible (18:00). Waited. General practitioner was confused by gynecologist's note (they'd written a note with "bone CT" instead of "bone scinti", two completely different things - probably misheard on the phone), was also confused as to which department of the clinic the letter of referral should be to. Wrote two of the darned things - with some luck, one would be correct. Told me they'd fax new letters of referral if necessary. (Gynecologist had just told me letters of referral could only be faxed in cases of emergency.) Also told me they hadn't gotten the diagnosis from the clinic yet (they should have), and I should tell the clinic to automatically send the diagnoses to all the doctors involved in the future.
 * Biked home. At 19:00, the paper war was officially over for today, and would begin again tomorrow at 08:00. Wrote down notes to prepare for it.

2015 June 12, Friday

 * Started paper war at 08:30 because I thought I was entitled to sleep, a shower, and breakfast. Possibly a mistake.
 * Phoned health insurance. Sick report fax arrived yesterday. The responsible person isn't there today, I'll have to phone again on Monday (when I need to be at the clinic almost all day).
 * Biked to clinic. Got appointment schedule. Two appointments on Monday, three on Tuesday, one on Thursday, one on Friday - all in different buildings of the (big) hospital. Was told I need at least one more letter of referral from my general practitioner (for the talk about port implantation on Monday 11:00). Was also told to show up for the appointments on Tuesday half an hour earlier so they could give me letters of referral from one part of the hospital to another. Wanted to take the letter of referral from gynecologist to clinic out of my backpack (the one I'd fetched yesterday) and give it to them - it wasn't there! Since I'd still had it yesterday at the general partitioner, and biked straight home from there, and hadn't opened the backpack since, I must have left it there. (That's not normal. I don't usually forget or lose papers or other things - but this is the second time in this matter, the papers which I probably forgot Wednesday evening haven't shown up again either. Pixies eating my papers? First symptoms of a metastasis in the brain? I don't know.) Told clinic that they should please send copies of all the diagnoses to a) my gynecologist, b) my general practitioner, c) another doctor I have to see regularly who should also know. They said they'd take care of it.
 * Biked back home. Phoned general practitioner - no, they didn't find the gynecologist's letter of referral. Searched thoroughly at home (both inside and outside backpack) - no, it wasn't there. Biked back to clinic. Found out there that this time, I'forgotten the appointment schedule at home. (I repeat - that's not normal for me!) Biked back home, got appointment schedule, biked back to clinic. Went to secretary. Got fax number. Phoned gynecologist on mobile and, quite ashamedly, told them I couldn't find their letter of referral, and could they please fax it to the clinic? Yes, they could and did. What I didn't know then (and the secretary there didn't tell me): The treatment can be done if the fax has arrived, but the original letter of referral still has to be handed in afterwards - either by fetching it (again, in my case) or by sending it by mail (which the gynecologist usually refuses to do). Did I mention that the gynecologist is quite a long drive away?
 * Walked around in the hospital, to every place where I'd have appointments next week. They weren't easy to find - I'm glad I did this. First I went to the department where the talk about port implantation would take place - because they still needed the letter of referral from my general practitioner. Went to receptionist, asked some questions, found out about the "fax letter of referral first, bring or send the original later" rule. (Why did no one tell me this earlier?) Got exact text (treatment and recipient) for letter of referral, got fax number, got postal address. Phoned general practitioner, told them the data, told them to fax and snailmail. They did it, it worked! (So far.) This is how I'll try to handle that letter-of-referral madness from now on. I can't drive from clinic to gynecologist to general practitioner three times a day. If they'll complain about postage, I'll try to pay it in advance.
 * Went back to breast cancer department and confirmed that I'd still have to bring or send the original letter of referral from the gynecologist. Then biked back home (at about 12.30). Phoned gynecologist - no office hours Friday afternoon, of course.
 * Phoned the department where abdomen sonography will be done because I wasn't sure whether I should just not eat anything 4 h before, or not drink water either. (The German word for it is a bit ambiguous.) Friday afternoon - no one there. Thank goodness, that test is on Tuesday, there's still time.
 * Checked if confirmation from employer about sick report had arrived. Nope. Will try again on Monday.
 * Phoned parents (back - they'd phoned while I was away) and told them about paper war.
 * Did some online banking - preparing to transfer part of my (rather meager) savings to my parents. Less trouble when I die, and I trust them to transfer them back if I survive.
 * Yay! Weekend now! I can finally do things like laundry!

2015 June 13, Saturday

 * Catching up on household and normal life. Angry about having to do this and not being able to do it faster (or delegate) - I'd planned to do some more death/sickness-related tasks, but didn't manage to get around to it.

2015 June 14, Sunday

 * More online banking and emailing - finished transfering part of my savings to my parents.
 * Otherwise, mostly the same as Saturday.

2015 June 15, Monday

 * Clinic appointment 08:00 for bone scintigram. (Letter of referral was accepted without problems - yay!) Waited half an hour, then got radioisotope injection (I'm officially radioactive now!), was told to drink a lot of water within the next few hours and come back at 11:00. But 11:00 was my other clinic appointment that day - the talk about port implantation in the chirurgical department of the same hospital. They told me to go there and reschedule it. (Drank some water.)
 * Went there. Got sent from room to room to room... then had to wait in line for a while (and used the time to drink some water)... then got sent to another room... then told I should come back there immediately after scintigraphy (probably 12.30 or so). (Drank more water.)
 * Phoned gynecologist. Told them the clinic still needs the original of their letter of referral, and could they please send it to them if I told them the exact postal address? This time, they could. Yay! (Drank water.)
 * Phoned health insurance. The responsible person had handed over my case to her boss and was waiting for their decision. She said she'd call me back. (Drank more water.)
 * Still some time left until 11:00 - biked back home. Checked if employer had sent confirmation that he'd received my sick report. He hadn't sent anything. Did household chores. (And drank water.)
 * Biked back to clinic. Health insurance called me back while biking. Sick report would be accepted as if it had arrived on 03.06. - if I could bring a certain document from my employer. Tried to phone employer. Was put on hold. Ended phone call and continued biking to clinic.
 * After waiting there for half an hour (with no mobile reception), the bone scintigram got done. For the first 25 min, my arms were in a position that started to hurt after 5 min (but I wasn't allowed to move). For the second 25 min, I could put them in a more comfortable position and things went fine.
 * Was told to go to another room on a different floor and wait for results. Phoned employer again while waiting. Told secretary about the document I still needed - yes, it was probably possible for them to write it, but apparently they hadn't received the fax with my sick report from my gynecologist (which the lady at my gynecologist's reception desk had repeatedly assured me had gone through). No, I couldn't bring the sick report this afternoon. Would have to bring it tomorrow morning (before my first clinic appointment that day at 11:00).
 * Doctor told me the bone scintigram results. No metastases found. Yay! Probably no peg leg or hook for this pirate soon.
 * Went to chirurgical department for talk about port implantation (at abut 13:30). Lady there sadly shook her head - no, there were so many patients ahead of me, they'd never make it today. Could we reschedule it? She looked at my already quite full appointment schedule (with port implantation on Friday) and sadly shook her head again. Then looked at the three appointments tomorrow (scheduled one after the other) and sadly shook her head again - they'd probably never manage to do these at the scheduled times. Then decided to do the blood tests (which were part of the "port implantation talk" appointment, which nobody had told me) at once and reschedule the talk (actually talks, one with the anesthesist and one to inform me about the procedure) to Wednesday noon ("so you won't have time to get bored", as she nicely put it). Then she went to get some sort of patient card which I apparently should have been given but didn't have yet. Then she drew blood (using the same injection hole which had already been used today and during the last few days and which is apparently the only one through which they ever find my veins). Almost didn't get enough blood, but it worked in the end. We laughed about the absurd scheduling and paper war.
 * Biked back home. Phoned parents and told them on mailbox that no bone metastases had been found.
 * Sent employer a message about the document I still need.
 * Updated my notes, found out I'd forgotten to phone the department where abdomen sonography will be done tomorrow because I wanted to know whether I should just not eat anything 4 h before, or not drink water either. Phoned them. (Yay! Afternoon, and they're still contactable!) No, mustn't drink water either. (Nice change compared to today!)
 * Cooked and ate "breakfast". (16:00)
 * Mostly household chores/normal life for the rest of the day. I wish I wouldn't always get stuck in these!

2015 June 16, Tuesday

 * Biked to employer, arrived at about 07:45. (I'd planned 07:30.) Handed secretary the sick report. (Finally!) Was told there must be a misunderstanding about the document I still need from them - they wouldn't write one dated back to 03.06., but the one from 09.06. (when my status of employment would have changed anyway if I'd stayed healthy, and which I'd already been sent) should do nicely for health insurance. I told her I'd phone health insurance right away and ask. I did that (had to wait until 08:00 though - responsible person wasn't there before) - and it had indeed been a misunderstanding, the document from 09.06. would do - but I had to send in the original, not a copy. Since it's an important document and I still need the original for other things, I went back to the secretary and asked if she could print me an official duplicate. No, she wasn't allowed to, but someone else there was, and she'd make an appointment for me. I told her I'd have to leave at 09:30 because of the medical appointments at the clinic. By then she was pitying me so much that she found a way to bypass the usual procedure and sent me right through to the right person who printed me the official duplicate immediately. (Cancer does have its advantages!) I phoned health insurance yet again to make sure that would definitely do now (it would), then biked back home. Sent employer a message that he could ignore my last message and I had all the documents needed now.
 * Email from and to parents - bank transfer had arrived ok, they'd sent me a helpful link - krebsinformationsdienst.de - I told them some more practical details (one of them concerning my mobile phone contract and how to best get rid of it after my death).
 * First appointment at clinic: cardiac echo. Arrived at about 10:20 (had been told to be there at 10:30), then did the "waiting in line, then being sent from room to room to room, then waiting again" routine again. Then I got some papers apparently needed for cardiac echo, was sent to reception desk, had to sign some more papers (one about who of my other doctors should receive reports - I thought we'd done that already -, and another form that I'd definitely already signed on Wed 03 June - I showed the secretary my copy - but had to sign again anyway), got some more papers I should read (one about treatment costs and tariffs which I definitely have to read, one more about "general terms and conditions of contract" which I might be able to skip), then got some more papers I should read from another nurse (more about that later), then got the internal letter of referral, then got sent to the department where cardiac echo would be done (which I wouldn't have found in time - 11:00 - if I hadn't scouted it out before). Had to wait there a little (not long enough to read all the stuff they'd given me). Then had to wait a little more while lying half undressed (but with my own t-shirt as a cover) on an examination bed in the diagnostic room. (That form of waiting was actually very comfortable - you could easily fall asleep like that.) The nurses were all very overworked, but very friendly. Then an even more overworked doctor hurried in, said something like "Hello! Please turn this way and position your arm like that...", did a great job with the cardiac echo, was highly concentrated, said everything was ok, said to the nurses, "What - eight more patients? How are we supposed to fit them all in?", and hurried out again to the next room and the next patient. No time for frills of any sort. Poor doctor and nurses. I got given the results and some more papers and biked back to the chemotherapy department.
 * At the chemotherapy department, my plan had been to just give them the echo results, get the papers for the next examinations (abdomen sonography and thorax x-ray), bike home and come back at 14:00. But it turned out differently: The doctor and nurses at chemo asked me if I wanted to stay and talk about the whole procedure. I said ok, I'd probably need all the info they could give me. So one of the nurses and me went into an empty room, sat down, she asked how I felt, I asked a few minor questions, she offered me some tea (which I declined because I wasn't allowed to eat or drink anything for 4 h before abdomen sonography)... and after a lengthy small-talky introduction, it turned out this wasn't really about giving me information (though I did get some on the side) but about recruiting me for a medical study. That was what the additional papers they'd given me before cardiac echo and which I hadn't had time to read had been about. The study was about treating chemo side effects (nausea etc.) not just with standard medication but additionally with "complementary treatments" like aromatherapy, accupressure, leg compresses, and the like. I'd be allowed to leave the study at any time, I'd be sorted into the group with complementary treatments or the control group randomly, I'd have to fill out some questionnaires and document every few days how nauseated I felt (on a 1 - 10 scale), I'd be allowed to do my own "complementary treatments" even in the control group if I wanted to but would have to note them down - and that was about it. I said yes, got sorted into the control group (fine with me!), and spent over an hour filling out the first questionnaire. (Most answers were easy but I'd have to look some up at home.) Oh, and it turned out one of my next of kin would have to fill out one, too. I should hand in my questionnaire before start of chemo - on Thursday, therefore, when the chemo info talk appointment was due - and my next of kin should send in theirs in a pre-addressed, pre-paid envelope until then, too. Not possible because they live 400 km away and postal workers are currently on strike. I said I could probably get their answers by email though. After that was over, I got some more papers and was sent off to abdomen sonography and thorax x-ray just in time. (Thank goodness I'd already scouted out where they were.)
 * At abdomen sonography, I handed in my papers at the reception (while wondering why there were over 100 black young people all wearing surgical masks sitting there - it turned out they were asylum seekers coming from a region with high risk of TBC - I wish them all lots of luck!), got sent to a room which I found after the third try, waited a little (with lots to read by now), then waited a looong time while lying half undressed (this time with a cotton blanket as cover) on an examination bed in the diagnostic room. It must have been three quarters of an hour at the least. It was quite relaxing, I almost fell asleep. Then abdomen sonography was done - and the doctor found (probably) nothing - yay! Pancreas visibility was bad today (because hidden behind bowels filled with air or something - I don't know exactly), and there was something in the uterus which might be a cyst or might be something else but was probably nothing. I asked three times whether it shouldn't be examined before September (when the next regular examination would be due) - she said no. I'll probably ask the doctor at chemo department again. I got given some papers and was sent to thorax x-ray.
 * At thorax x-ray (which I found at the second try with lots of help), I barely had to wait at all. They did the x-rays, then remembered they should have asked if I was pregnant. (No, I'm not.) But I can't blame them, they really are overworked. I'll know the results in 3 days or so. Was given some papers.
 * Went back to chemo department, handed in the examination results, biked back home at 16:30-ish or so. Finally drank some water.
 * Mail from health insurance had arrived. A form I had to fill out, some info, and a form the doctor at the clinic had to fill out to confirm I was still sick. Phoned health insurance to clarify some points about filling out the form and asking if it would still be early enough if I sent it all in on Thursday (after chemo talk appointment).
 * Phoned parents, told them about the study and the questionnaire. Wasn't sure if they'd both have to fill out one because I hadn't read all the info yet.
 * Scanned in the questionnaire for parents, plus the info papers for them, made PDF files. Read some, found out that I had to choose only one "next of kin", and they should fill it out without me knowing their answers. Emailed forms to parents (two mails because files so big because so many pages), telling them to fill out one form but decide among themselves who filled out what (and it was ok if they both filled out something - because, hey, it's better for the study if they have an average of both my parents than just one), then scan the stuff back in and mail it back, and I'd mark the same checkboxes in the original without reading the questions and without knowing who of them had answered. (Since the data would be anonymized, no signature was necessary.)
 * Had breakfast at about 19:30.
 * Updated my notes.
 * Probably forgot to mention some other paperworky things I did that day.
 * Googled for bandanas/headscarves/etc for chemo. Went to sleep late.

2015 June 17, Wednesday

 * Read email from parents - they had questions about the questionnaire, and I'd forgotten to put one page in the PDF. Made new PDF, mailed, answered questions, told them this whole questionnaire was the most unimportant part of the whole study, and a few "wrong" answers would still be ok and better than no data. (Which is almost certainly true.)
 * Filled out the missing parts of my own questionnaire.
 * Looked for my last allergy testing results, put them in backpack - doctor wanted to see those for the study, they'd said (though now that I was in the control group, I doubted it).
 * Prepared letter to health insurance (everything but the form the doctor had to fill out).
 * Got mail from parents with filled out questionnaire (a few answers were missing - they'd found the questions ambiguous and hadn't been sure how to answer. Copied answers into original, filling in the missing answers the best way I knew how (with a bit of guessing), put the thing in envelope.
 * Went to clinic for port implantation talk appointment at 12:00. Waited and read some of the clinic info paper backlog. Then they wanted to draw my blood again, but relented when I told them they'd already done that on Monday. They found the results and sent me onward to the responsible doctor.
 * After some waiting and catching up on clinic paperwork backlog, the doctor explained the procedure to me (well enough) She told me I'd get local anesthesia plus some sort of general pain medication/sedative that would daze me enough to be unable to drive. I'd have to be picked up and brought home by someone and shouldn't be alone for 24 hours. I said that was simply not possible, I wasn't nervous and could deal with quite some pain, and could we do it without the general pain medication/sedative (which I was actually more worried about than the pain)? After thinking some more about the situation, they said ok - if anything went wrong, they'd give me the pain medication anyway, then put me on some clinic bed to sleep it off. But it would probably work without. And then they found out there was simply no free time slot on Friday (because half the staff was on annual work outing while the other half was working voluntary overtime) and the slot implantation could only be done a work later. Which would be really, really late because I'd need the chemo as soon as possible. So (after lots of phone discussion) they scheduled it for tomorrow morning after throwing someone else out of the schedule who would have had their port removed (after successful chemo treatment) but would now have to have it for a few days longer. I told them I'd tell the people at chemo department they'd have to reschedule the chemo info talk (scheduled for tomorrow 14:00). They told me that with some luck and without all that pain medication, I might actually be up and about and able to go there after implantation tomorrow. Then I got some papers and signed some papers (which I would read later) and got sent on to the anesthesist - because the talk were actually three talks (which I hadn't known before).
 * Went to see anesthesist. Was weighed, given a questionnaire to fill out, given some info I should read, then waited a long time which I used to catch up on reading most of the clinic infos despite some video about anesthesia-related brain damage and brain swelling running non-stop in the waiting room. (It would probably have been educational but I didn't have time to listen.) Talked to anesthesist - she saw no problem with just local anesthesia and said it would probably work fine. She said I shouldn't eat 6 hours before the implantation, and shouldn't drink water 2 hours before. She also looked at my allergy tests (which I'd coincidentally brought for the study). Then I got some papers and was sent to the chirurgical department.
 * At the chirurgical department, I just talked to the lady at the reception desk and finally found out that I should be there tomorrow at 07:30. Oh, and I should make an appointment with my general practitioner on Friday for changing the bandages. No, the clinic couldn't do that, health insurance would only pay if the general practitioner did it.
 * Went back to chemo department. Told them I might or might not be there at 14:00 tomorrow for chemo talk because of port op, and might need a new appointment on Friday. Also gave them the filled out study questionnaire. Also told them I needed the doctor to sign my too-sick-to-work document right now, because if I didn't send it in today and if something happened during the op tomorrow, I wouldn't be properly insured. Luckily the doctor was still somewhere in the building (it was 15:30 or so) and signed the paper - it now said I would be unable to work until June 30. Apparently they only sign it for the running month. I would have to do the same procedure every month. Tried to phone general practitioner - no luck on a Wednesday afternoon. Biked home.
 * A letter from geneticist had arrived, but no results yet (of course) - just a sort of summary of the appointment. Among other things, she asked me to ask my mother some more details about a relative of hers who'd died of cancer.
 * Updated notes.
 * Quickly wrote health care proxy/power of attorney (German "Vorsorgevollmacht") for parents (which I still hadn't gotten around to finish) using an online form [will put link here later] - in case anything would go wrong tomorrow (unlikely but possible). Put it in an envelope to parents. Brought envelopes with parents' questionnaire for study, forms for health insurance and power of attorney for parents to postal office. Thank goodness there's a stamp vending machine outside because postal workers are still on strike. Did some more non-cancer-related errands (and also went swimming, which really did me some good. Always does.)
 * Phoned parents, told them port implantation would be tomorrow, and not to wonder about the letter with the power of attorney documents, and asked my mother the geneticist's questions about her relative.
 * Ate something (almost breakfast - I'd had orange juice this morning) and drank some water while I was still allowed.
 * Went to bed (probably a bit too late).

2015 June 18, Thursday

 * Went to chirurgical department at 07:30 and had port implantation. Everything went very, very well. All the people involved were very friendly and, as far as I can tell, competent and well prepared. (Oh, I almost forgot to mention: One nurse who brought me to the surgery actually tried to convince me I should, during chemo, try cannabis against the side effects. I told him that wasn't my thing. He wasn't otherwise involved in the surgery though.) I got "only" local anesthesia and nothing else, but felt so relaxed I could almost have fallen asleep during surgery. Was brought to the waiting room afterwards (at about 09:30), and offered coffee, tea, water, and a pretzel. Ate, drank, made short phone calls to parents and general practitioner (and got appointment tomorrow morning). Then the IV needle (still in the back of my hand) was removed, I got some papers (only a reasonable amount though), I was also offered pain medication but declined - and then I could go home. Biked back home (it was raining, I was glad I'd stuffed my rain jacket into my backpack last thing in the morning). Phoned chemo department and told them I'd be there at the appointment 14:00 this afternoon.
 * The letter from Institute for Plastination (with forms and info about body donation) had arrived. Lots of stuff to read. Skimmed some of it.
 * Did some unrelated tasks very slowly because I shouldn't and couldn't move my right arm much (could only lift it to not-quite-shoulder height, for instance - otherwise it wouldn't just hurt but there would also be danger of something (body part or port) being damaged or dislodged or the wound reopening.
 * Went to chemo talk appointment at 14:00. Was given lots of important stuff about chemo to read and told to wait. While sitting in the waiting room and reading, the nurse who is the contact person for the medical study came in, gave me a ringbinder with the study forms (and some more papers for the study) and explained how to fill them out. Since the forms looked rather foolproof to me, I tried to nudge her into doing this as quickly as possible. Nonetheless, shortly after she left (and I hadn't read half the chemo info yet), the chemo doctor called me, and one of the things I needed to do was to sign that I'd read and understood the chemo info. But the doctor went through it with me thoroughly and explained which kind of chemo I'd get, which side effects it would most probably have, what I should and shouldn't do, how the chemo procedure would go, etc. More practical details and questions and problems than would fit in here - they'll probably all show up later in the dictionary. I felt a sense of information overload at that point and hoped I wouldn't forget anything. Should probably have made notes (and the doctor probably wouldn't have objected) but she tried to fit as much important information into the limited time she had until the next appointment, there wasn't really time for noting things down. I tried to cut her short when she told me if and how I could still have kids after successful cancer treatment (because I definitely don't intend to), but she said she was required by law to tell me. I told her the geneticist had said we should call her before beginning of chemo because she might already have partial results - and could she do this? She confirmed it was really important (the results might change my chemo medication cocktail), made a note in my file, and said I should phone the geneticist first and tell her to please fax any partial results to the clinic. In the end, I signed some papers, got some more papers (on some of which she'd marked the important stuff), got the date of my first chemo (Thursday 25), and we went to the reception where I got more info papers, more letters of referral, a letter to my general practicioner, several prescriptions (some for medication I should take the day before chemo, one for a wig, one for being taken back home by taxi cab after chemo - they said I might not be able to walk or bike home, and even if I was, they weren't legally allowed to let me go alone, and health insurance will pay part of it) and probably some more papers I forgot to mention. I asked how and when I could get the sick report for health insurance saying I'd be unable to work for longer than 30 June - they said I'd get that one on the first day of chemo, it would say something like "until further notice", and I wouldn't have to send a new one to health insurance each month. Yay! Again, lots more info and organizing that I'm probably forgetting to mention now. Biked back home.
 * Skimmed some of the papers. Couldn't find the time of first chemo at the first glance (or second glance). Found out I needed a letter of referral for chemo from gynecologist. Decided to postpone reading all that stuff to tomorrow/weekend.
 * Read much of the body donation papers. They confirmed that the real difficulty would be to make sure the people from the institute would get my "Sterbeurkunde" (see 2015 June 09, Tuesday) in time. Tried to think about ways to make sure they'd get it even if my parents weren't around at the time of my death, and/or wouldn't be able to bring my birth certificate to the civil registry office within 24 hours. The info gave some good hints. (For instance, you can, while still alive, give authorization to someone who isn't your relative that they are entitled to request a "Sterbeurkunde" at the civil registry office. They still need a certified copy of the birth certificate for that though - which the civil registry offices usually don't issue. At least that's how I understood it. But surely there must be some way? Made a note to get more info tomorrow.)
 * Made notes for phone battle and errands (general practitioner, apothecary, ringbinders, ...) tomorrow.
 * Should have updated my notes but was too tired.

2015 June 19, Friday

 * Phoned health insurance. No, my letter hadn't arrived yet, my insurance status wasn't changed yet. I asked if I could nonetheless already talk to the person responsible for copayment exemption since I'd already got the first prescriptions requiring quite some copayment? Yes, they put me through. I described the situation. I found out that, as long as I could advance the copayment, there was no hurry - I could get it back. Yes, they'd send me forms about my income, I'd send it back, preferably with receipts of copayment already paid, then they'd send me some new forms, and I could get the money back and be exempted for the rest of the year. Made mental note to get a list of copayments paid so far from my apothecary. (I always shop at the same apothecary, they offer to register there, then you can just get lists of copayment for your health insurance and taxes there at the end of the year, or at any time before. I was glad I'd found that out a few years before.)
 * Phoned Institute of Plastination about "Sterbeurkunde" details. How could I spare my parents most of the trouble? (Also, what would happen if somehow I survived my parents and my next of kin would be some totally clueless faraway old aunts and uncles? But we didn't get that far at that phone call.) Yes, they had an extra form for giving them authorization to request the "Sterbeurkunde". Yay! They needed that and a copy of my birth certificate. Certified copy, surely? The man at the phone said no, though their info papers had said yes, and the people at the registry office had said yes, too. I should just send a normal uncertified copy. (I was doubtful that would work and made a mental note to investigate some more.) No, the form wasn't among the stuff they'd already sent me. They'd send it to me, but, as I knew, they'd recently changed their forms, and the new version of that one was still in print... it would take a few weeks. Ah well, while the first weeks of chemo will be uncomfortable, I probably won't die until then yet.
 * Phoned chemo department at the clinic. Got answering machine repeatedly though those were their normal office hours. Phoned main reception, they said I should keep trying.
 * Phoned geneticist, got answering machine - next office hours on Monday. Left a message with date of first chemo and the details she'd requested about relative who'd died of cancer, and asked if she could please fax any partial results to the clinic. Made note to phone again on Monday.
 * Phoned parents. Told them (among many other things) that the body donation forms had arrived. Did they want to look at those at all (and I was currently trying to make it possible that they wouldn't have to)? And if so, just at the most important parts (the brochure for next of kin, for example), or at all of it in detail? I could scan and email the most important stuff, but if they wanted all of it, I'd ask the institute to send them the whole info package, too. My mother (who is quite comfortable with the idea by now) said she'd ask my father (who is still a little less comfortable).
 * Finally got through to chemo department. Yes, the time of first chemo should be on the paper I was looking at, but wasn't. They'd forgotten to note it down there. 09:20. Was it true that I needed a letter of referral from my gynecologist, as the paper said? Yes. They'd forgotten to mention that. (I really don't blame them - it was on the paper, after all, and they'd had to mention such a lot of things that day.) Could they please tell me the exact text, recipient, fax number, and postal address for the letter of referral, because I'd use the "fax-first-then-send-original" method? (Hey, I'm learning!) Yes, they could. Phoned gynecologist, gave them the data - yes, they'd fax first, then snailmail. Yay! Should I pay postage? (Because this would be repeated for all chemo treatments, it would sum up.) No, they'd pay it. Yay again - suddenly it works!
 * Biked to general practitioner. Got bandage changed - wound is looking unspectacular and healing well. Delivered papers (diagnosis in a closed envelope + letter of referral) from clinic. Got diagnosis back after they'd copied it - apparently there had been no need to enclose it in an envelope. (And I was very lucky to get the copy back because I'd find some important information on it in the afternoon.) Got receipt for my standard asthma medication. Asked whether I could get confirmation that I was chronically ill (no, not cancer - asthma and one other thing that hasn't really given me much trouble lately) for health insurance copayment exemption. Yes, but they'd need the health insurance form for that. (That was fine, I'd already asked insurance to send that form, too.) Talked about the regular blood checks I'd have to have now. They said they usually did one before first chemo, too - had the clinic said anything about that? The clinic had already done one for port implantation, but did that one give them all the data they needed for chemo? Wasn't sure, phoned clinic, got through immediately this time - yes, they had all they needed. Yay!
 * Biked to department store. Got ring binders - one for all things cancer, one for stuff other people (my parents, mostly) would need after my death.
 * Biked to apothecary (after some grocery shopping). Got pre-chemo medication (one of two, the other had to be ordered), asthma medication (same there), and copayment list. Told them I had cancer and was trying to streamline things. They told me I could email prescriptions so they could order them if they weren't in store (so I wouldn't have to go there twice), and they could deliver medications to my home in case of need. And all that info could also be found on their website. Yay! (Yes, I know there are online apothecaries, too - never tried or needed them so far, the local apothecary here isn't far away.) Biked back home.
 * Some time later in the afternoon, I read the diagnosis and found out the sutures had to be shortened/partially removed on the tenth day after the port implantation by the general practitioner. I'd probably have forgotten that. I vaguely remember someone mentioning it - didn't they say it would be done at chemo when the port was used the first time? Had they? Would it? It wasn't the tenth day, but the 7th. Had I noted it down somewhere, or was it in the port implantation papers somewhere? I'd really need to file and reread all this stuff soon.

2015 June 20, Saturday

 * Got stuck in household quagmire and other tasks, didn't really get anything done regarding cancer. I hate this - why am I so slow at everyday chores?
 * Removed port bandage in the evening. Wound/scar is looking ok.

2015 June 21, Sunday

 * Mostly the same as yesterday. (I still hate this.)

2015 June 22, Monday

 * Phoned geneticist, gave them the clinic chemo department fax number. They will ask at the lab and fax any partial results they already have to the clinic before chemo starts, plus will phone me back.
 * Filled out chemo port medical alert cards (yes, two different ones) which I'm supposed to carry in my wallet.
 * Tried to find a bra with straps that don't press on the chemo port. Found one with a (rather uncomfortable) neckholder that I'd almost thrown away two years ago. If you have a bra at home with straps that can be hooked in and combined in various ways you think you'll never need: Keep it! This (or any sort of wound/operation in the chest/shoulder/back area) is what you might need it for!
 * Got letter from health insurance with forms about my income to fill out for copayment exemption. Phoned health insurance to clarify some questions. Apparently they still have the doctor's confirmation that I'm chronically ill from a few years back - I don't need to get it again from my general practitioner. Yay! Scanned and printed some documents about my income (glad I found them all, and glad they only wanted copies this time!), filled out forms, put it all in envelope.
 * Landlady (who lives in the same house) asked if I could help her son with school work next week (I'd done that before) - I told her I didn't know how fit I'd be next week because I got breast cancer and first chemo on Thursday. (It had been on my to-do list to tell them before my hair starts falling out - so that's done now, too.) She was very, very friendly and offered lots of help: driving me home after chemo treatments, shopping, cooking, ... I thanked her a lot and I'm really glad about it. I'll try to do as much as I can myself (and told her so) but am glad to have a plan B to fall back on if I can't. She's currently a stay-at-home mom and said she doesn't care if she shops and cooks for one more person.
 * Biked to post office (posted letter to health insurance) and apothecary (got the medication they'd had to order).
 * Read some more of the clinic papers - still haven't read and filed them all!

2015 June 23, Tuesday

 * Found a relatively comfortable and practical way to wear a bra in such a way that the straps don't press on the chemo port.
 * Geneticist phoned: She got the test results (already!), I don't have breast cancer genes. Yay for all my relatives! (And for me, too - if I survive this, probability of recurring cancer will be much lower than with the genes.) She'll fax the results to the clinic and send me the report.
 * Read all the body donation info the Institute for Plastination had sent me (that took over an hour). Filled out most of the forms, noted down questions and to-dos, scanned and printed some of the forms I'll need a copy of, filed all of it in a ringbinder.
 * Went to a place with a color printer to scan and print out copies of my birth certificate (for body donation forms).
 * Phoned parents, told them (among other things) about genetic test results, asked my father again how much of the body donation info he wants to read. He said he's fine with the idea by now (good! I knew he'd be eventually), and he just wants the brochure for next of kin. Scanned and emailed that.
 * Finally read the patient information leaflet of one medication I'm supposed to take tomorrow. (Lots of possible horrible side effects, of course.)
 * Read and filed more clinic papers.

2015 June 24, Wednesday

 * Took day-before-chemo medication (one pill in the morning, one in the evening). Horrible side effects haven't manifested so far (apart from a very slight headache). Yay!
 * Read patient information leaflet of second medication - it's a very strong pharmaceutical drug against sickness symptoms, the possible side effects are even worse than those of the other drug (and occur with rather high probability), plus another medical condition I have is a contraindication. Thank goodness I'm only supposed to take this medication after chemo at home if I think I need it. I think I'd rather throw up twenty times a day than take it.
 * Phoned clinic, asked some more questions about chemo tomorrow (about stuff to bring, whether I can/should eat breakfast before, some more paperwork questions, etc.).
 * Phoned local notary's office to find out more about notarial certification (for documents for body donation). They said I should phone again next week, and they'd probably be able to make an appointment to look at all the documents, and counsel me - for free! Notarial certification will probably not be for free, but they'll tell me the details then.
 * Read and filed some more clinic papers. Decided (after reading some more about the side effects) that the long hair should come off immediately before chemo because I don't want to have to worry about throwing up on it. (I'd thought I still had a few days to do that, hair will start to fall out 1-2 weeks after first chemo.) Googled NGO and conditions about how to donate long hair for wigs for children with cancer. Found haare-spenden.de. Went randomly to the next hairdresser I saw (the one I'd visited last had closed). Told them I had no appointment but it was kind of urgent and important and the haircut was simple. It turned out the hairdresser had had cancer herself, knew exactly what to do, cut my long hair off as a braid I could easily take home and send in (I'm not sure it's even long enough but will find out), made me a nice short crewcut - and then even told me it was for free! (But since they had piggy banks for tipping the hairdessers there - as in most hair salons here - I tipped her about the amount the haircut would have cost.) I had a crewcut before the long hair, and though the long hair looked better, I've always loved the practicality and feeling of the crewcut!
 * On the way back, I saw a few scarves/headscarves on sale. They were just what I needed and I didn't have any good ones yet so I bought two. That violated my resolution to only buy certified eco-friendly clothing (which I've kept for nearly two years now, mostly by buying none at all) - but at least they were natural fiber (cotton with a bit of silk), and I probably wouldn't have managed to get eco-friendly ones in time. I may also need a cotton cap for the night and/or to wear under warmer caps in the winter, but at least the two scarves go well with more or less all my clothing and I can run around outside with them in the summer. Plus the salesclerk told me her mother had also had cancer (and survived), plus she gave me a free sample of a skin care product (for sensitive skin, with no perfume - the clinic had told me there would be skin problems and I should use a skin care product).
 * Packed for tomorrow. Didn't get it all done in time - had to look for some of the things they told me to bring: a blanket, and a suitable shirt/blouse and comfortable jacket that could be opened in front. Also worried about how to handle the bra so the strap would definitely not get into the way. (Wasn't sure if I could just remove it during the whole procedure - now I know I can.) Didn't even get around to packing most of the other stuff: all the papers, food, stuff to read/listen to (it turned out the old and new medical papers would be more than sufficient for reading, which I'd counted on anyway). Went to bed too late (against doctor's orders).

2015 June 25, Thursday

 * Got up, hurriedly put the rest of the medical papers into the ringbinder (no, I hadn't managed to finish that before either), had breakfast, packed some veggies, a banana and a smoothie for food, stuffed everything in my bag in a hurry (had trouble closing it) and biked to the clinic for first chemo.
 * Arrived 5 minutes late for my first chemo! :( No worries though, they'd planned in such things, there was ample time. We did some paperwork first, one of the nurses explained the procedure, then there was a 15 min talk with the doctor. (Mostly about medication: Yes, I was right, one of those I got is contraindicated, I shouldn't take it. I stressed again that I'd take anything that would increase my chance of healing and survival, but was otherwise fine with having uncomfortable symptoms and preferred not to take anything unnecessary against them. And yes, we could cut off the ends of the suture today after chemo, I wouldn't have to go to my general practitioner for it.) Then chemo started. It went very very well, no problems at all. A needle with a tube was stuck into the port, then during the next four and a half hours, I sat in a very comfortable chair/lounger with an I.V. post next to me, and lots of different bags of various liquids got emptied into me in a precicely scheduled order, interrupted by some syringe injections which also went into the port tube. I could walk around (especially go to the toilet, taking the post with me) for most of the time. There were two phases when I couldn't - one when the I.V. drug could harm the skin tissue severely if any of it spilled outside the port, so I should move as little as possible during that phase, and the other one where my hands were stuck in icepack gloves (because one of the side effects can affect the nerves in the fingertips - tingling, numbness, impaired sense of touch, etc., and cooling reduces that side effect). Oh, and there were three pills I had to take during chemo at different times.That was basically it. The atmosphere was very nice, there was very soft (but good and modern) background music, a trolley with water and an assortment of teas, and at one point, we got read a guided relaxation meditation (the usual "sunny meadow and lake" stuff). Lots of interesting talk with the other patients, I learned a lot from that. Also lots of brochures to read from the Deutsche Krebshilfe. Took with me some brochures. (More paper! Voluntarily! But very good info.) Found out later they're all downloadable from the website (plus, if you prefer paper, you can order them there for free). Shortly before the end of chemo, they reminded me of calling someone to fetch me (and offered to use their phone), but didn't control if I did. At the end of chemo, I got papers with more appointments, some more medication, and papers with when to take which one (though quite unclear - had to ask a lot about what and when exactly, and in the case of one subcutaneous injection, how and where, and made a mental note to type up a schedule later). Also clarified some more questions about paperwork. They forgot to cut the suture ends (and I forgot to remind them). I forgot to take with me some more brochures about an onko walking/sports group I'd like to check out. Then I walked out and - totally against doctor's orders - biked home. I was feeling very fine (very very slight headache but if I hadn't known I'd just had chemo, I'd have chalked it up to the hot weather and not thought further about it). Yes, I would have called a taxi and left the bike at the clinic if I'd felt worse (and probably will have to from the third or fourth chemo onwards or so).
 * Back home - first put medications into fridge, then put on some more comfortable clothing (next time I'll go to chemo in a tracksuit directly). Ate some of the veggies, drank the smoothie. (I hadn't eaten anything during chemo.) Phoned parents, got answering machine, told them I was back and everything was fine. Then continued the phone marathon:
 * Phoned clinic - could I just come back and have the suture ends cut, or should I ask my general practitioner to do that? (Answer: General practitioner - who is much further away.)
 * Phoned general practitioner. I should go there tomorrow morning to cut off suture ends, bring some diagnosis papers, get 3 appointments for blood tests (until next chemo - on July 02, 08, 14, next chemo will be July 16).
 * Phoned gynecologist (needed many tries) - need letter of referral for next chemo from them. But since July is in the next quarter, I should phone them again on July 01.
 * Talked with health insurance three times (called them twice, they called me once) - I have to pay copayment for the medications I got from the clinic, I'll have to hand in proof to get a refund (after the copayment exemption request is through), the clinic outsources copayment handling to a special prescription accounting center, what do I have to send in? (Three things, it turns out: copy of letter from clinic, original of the bill, copy of bank statement.) Oh, and the decision about copayment exemption may take up to four weeks because my status of insurance isn't officially changed yet.
 * Phoned social consultant at the clinic (I'm glad they have one!) to make an appointment to talk about financial aspects and some benefits I'm probably entitled to but am still clueless about. Her office hours already ended today - will call again tomorrow. Also downloaded the relevant brochure from Deutsche Krebshilfe - will have to read it before appointment.
 * After the phone marathon, I wrote down lots of hurried notes, today's part of the medication schedule, and part of this diary entry.
 * Took the two remaining cancer-related meds today (at different times, one with just water, the other one with/after a meal - the rest of the veggies I'd taken to chemo).
 * Took a walk outside - did me lots of good.
 * Wrote down the rest of the medication schedule, printed out a copy for general practitioner. Gathered most of the papers I'd have to bring to general practitioner. Made to-do list and time plan for tomorrow. Still lots of things left to do for tomorrow morning, but too late today.
 * Still not feeling any severe side effects yet (just a very slight, negligible headache). Yay!

2015 June 26, Friday

 * Still not feeling any severe side effects yet. Yay! Household is in utter chaos, lots of things to do, but feeling physically and emotionally fine.
 * Took various medications at different times in the morning - some with water, some with/after food.
 * Wrote packing list for chemo next time.
 * Scanned two documents and printed copies (one for general practitioner, the other for health insurance).
 * Hunted down a patient information leaflet on the internet for one of the meds I was given by the clinic but they didn't give me the leaflet for. Read it, sounded ok. Read the leaflet for the injection this evening, noted down questions to ask general practitioner about it. (I'd never injected myself with anything before, I don't want to do it wrong!)
 * Phoned social consultant at the clinic again - she didn't have time but phoned me back an hour later. I described my case, she said I'd basically done all the right things (regarding health insurance, employer, etc.) and there were a few more financial benefits I was probably entitled to and should try to apply for. It would make no sense to make an appointment next week (since health insurance status change was still in process), and then she'd be on vacation for three weeks. She gave me some addresses and URLs and hints and topics I should read up on, told me there would be someone substituting for her in case of emergencies, otherwise I should call again in a month.
 * Phoned civil registry office in the town I was born in. Asked about how to get a certified copy of my birth certificate for the Institute for Plastination (for body donation). It turned out to be much simpler than expected - they don't issue copies, they simply issue new birth certificates - as many as you want, at a fee of 10,-€ per document. The old birth certificate is invalidated by the new ones, and you can order them online. Ordered three - one for Institute for Plastination, one for me, one for my parents.
 * Phoned dentist - next routine appointment will probably be exactly at the day of 3rd chemo. Will call again in August when I know the exact schedule, and will get a new appointment then.
 * Fished out customer cards for two sports shops I intended to visit today (to buy a summer cap, a cotton beanie, a bathing cap, and nordic walking poles - all the "sports with cancer" brochures say you should walk a lot, preferably with poles.
 * Finished unpacking chemo bag, left blanket in for next time.
 * At 10:00, took the last of the morning medications, spent half an hour looking for my keys (grrr!), and biked to the clinic.
 * Embarrassedly asked them to tell me the name of the doctor who was treating me during chemo. (I knew the names of the two other clinic doctors who'd seen me, but the chemo doctor's name was hard to remember, I could neither find her on any of the clinic papers nor on the clinic website, and her signature was unreadable. And my general practitioner and a few other people - and me - would probably want to know.) Also asked one more paperwork question (a document about the port still needed to be filled out) and took with me the brochures about local onko walking/sports groups I'd forgotten to take yesterday. Biked from clinic to general practitioner.
 * Gave general practitioner the papers, got a copy (or original) of each back for my own file. Made blood test appointments. Got stitches from port implantation removed. Doctor asked me how I felt physically (fine, yay!) and emotionally (fine, yay!). We got talking about advance health care directive, I shamefully admitted I was still not finished writing it, but explained my basic wishes (which fit into 3-5 sentences) and told her I'd probably get it finished in time for one of the next appointments. Had to explain to her what body donation was. Then I asked questions about the injection (she showed me the basics and said one of the medical assistants would explain more - she was in a hurry by then, they were closing at noon and she had CME in the afternoon). Also asked about sports - no swimming until the blood tests show sufficiently high leucocyte counts, then she'll give me her ok. But lots of walking and biking and other exercises, please! No more time for asking about food (but I'd already read lots of info in the brochures anyway). Then not one, but two medical assistants took over and explained the injection some more.
 * Left general practitioner and got a phone call from my parents outside - they'd tried my landline first but it's not receiving calls properly. (Great timing! But I knew I'd just need to reboot the router.) Told them I was still feeling fine, and lots of info. They'd told some of my relatives about my cancer. (Easier now that the genetic test results already showed it wasn't running in the family.)
 * Went shopping at three different sports shops (with a visit to a cheap but good salad bar in between). Bought cotton beanie, cotton/linen cap, walking poles, and even a bathing cap (very cheap - if I don't get to use it, it's no big waste). Biked back home.
 * Rebooted router, tested phone. Filled out forms for medical study. Cleared a tiny part of the table, made food, took first of the evening meds. Wrote more of the entry, took next evening med.
 * Prepared for injection and for going to bed directly afterwards. (According to patient info leaflet, doctor, and nurses, the injection would cause pain in bones and joints, but boost immune system. The nurses had said it would be more comfortable to sleep through them afterwards.) Got injection ready half an hour later than I'd planned - thank goodness it wasn't time-critical. Worried afterwards if I'd injected the stuff deeply enough. (The assistants at general practitioner had said I should inject slightly slanted - l was worried if I'd done it too slanted. Leaflet said nothing about it. Internet said that with that needle length, it was usually done vertically. Internet also said it depended on circulation how well the medication got distributed into the body. Trying to get circulation up, I did lots of sit-ups and other ab exercises. Found bed too soft for them, dug out gym mat, did more exercises. Still worried about the effect. Went for a walk and light jog (as much as I dared with the now sutureless port implantation scar) in the near dark. Went for a much longer walk after that. Climbed a climbing tower (maybe 5-6 m?) in the dark. Got adrenalin and a bit of sweat flowing - if injection doesn't work now, it won't be for lack of circulation. Walked back home, arrived shortly before midnight. I hope there will be bone & joint pain in the morning (and not just sore muscles from exercises)!

2015 June 27, Saturday

 * Feeling something vague in bones and joints that can't possibly be called pain - but I hope it means the medication arrived there and is doing its work. Next blood tests will show.
 * Took morning meds, had trouble to get enough dishes done in time for the one I need to take with food. Today will have to be a serious household day: Dishes, lots of laundry, shopping, preparing food, a bit of cleaning and decluttering... I hate that I'm so slow with these things (and have been for all my life). Hygiene is more important now (with immune system probably going down), and so is healthy food - I can't neglect these things.