Bursting the dam

The last two days have been devastating for me. I consider myself an optimist but I have spent these days mostly sobbing and feeling very sorry for myself.

I was supposed to start my last round of chemo on Monday, but I first got a call to come in and then a call to not come in because there was a covid break out and they ran out of beds.

On Wednesday I got another call to come in, but now I had two different bacterial infections, one of which is antibiotic resistant. A bladder infection and my old check engine light breast abscess. “Fan-fucking-tastic”

They put me on loads of medication and are keeping me here till at least Saturday. If it looks better I might start chemo today, if not then on Saturday I have the first of three operations for the coming week. I’m dreading all the upcoming operations as it is since my last run in with anesthetic where I woke up in theater. And of course there is still that last chemo to work in somewhere, so I would then probably spend all of next week in hospital too.

My brother is here from New Zealand and he is leaving next week Friday. I haven’t seen him before this visit for thee years and who knows when I will see him again after this.

To say that I am distraught would be the understatement of the year. I’m also panicking that the stupid boob is trying to tell me something else has gone pear shaped.

Al meine Sachen fallen auseinander 😭 my head is not a good place to be right now. I am terrified, sad, and tired. I have a psych consultation scheduled for some time today, which is probably a really good idea at this point.

So close…to half way

I’m done with 4 out of the 5 chemo sessions. 🎉🎉🎉 And then of course comes the Brachytherapy.

You know, I dreaded the chemo. I thought it was going to be one of the hardest things I would ever do. Psychologically I guess it was/is. It’s willingly sitting down to be poisoned. It’s knocking out your own immune system so that the radiation can be more effective. It’s knowing that you can end up with permanent damage through the treatment and it’s still your best option for long/er term survival. That all is quite a mind bender.

It’s been going much better than I ever expected. Yes, I am very tired and nauseous but I don’t have the full range of side effects for which I am grateful. Well a few of them have snuck up on me in the last week and caused me a lot of panic and wobbles. I now have tremors, where occasionally (thank goodness not all the time) my whole body shakes but it gets especially tricky moving my hands in a purposeful manner. It upsets me a lot when that happens and I sit on them, literally, until it subsides. The doctor increased my magnesium to try and sort that out. It looks like I might also pick up some nerve damage to my hands and feet. I was warned to be on the lookout for pins and needles and twice in the last week I had that. It might be temporary (pretty please) or it could end up being permanent. No way to know until we finish. I have pretty much constant upset tummy and apparently the chemo is making me smell like wet cardboard. I’m also picking up random infections quite easily.

You already know about my run in with para Influenza number 3, I can now add gastritis (very uncomfortable – I feel like I’ve swallowed a big pointy brick), bladder infection, ear infection and one eye tear duct infection. Most of these resolved themselves after a few days except the gastritis. The doctor gave me some protein inhibitors to take for ten days, then we’ll see if that also goes. So far so good.

This week I asked them to arrange a psyc consult for me. In English if possible because I don’t know the full range of German feeling words, and I don’t think Ich bin traurig or Ich habe Angst is going to help all that much.

Next week I get to ring the bell for finishing chemo. I am ridiculously excited about that. I am going to ring that fucker like Quasimodo is being attacked by fleas while swinging his way through Notre Dame. 🤣 The nurse promised to take a video for me.

I had the consult with the Brachytherapy doctor to sign off on the procedure and the risks. She explained it very nicely to me. The radiation I am getting currently is considered low level, the next bit is going to be much much MUCH higher and focused on the original tumor site. She gave me the numbers, not that it means much to me, but she says without it I will not be able to beat this cancer and the success rate with this is 98%. That seems like really good odds to me, I’m in. She also promised that it won’t be painful, every thing is done under anesthetic. 🤔 I’m a little less inclined to believe that part of it, but we’ll see I guess. It doesn’t matter if it is though, there’s only one way and that is through. I have a high pain threshold and I am highly motivated to survive.

I am not excited to go under again after waking up in theater last time, obviously. Getting back on this particular horse is a big one for me…and there are at least 5 or maybe even 6 of these ponies lined up for a ride.

Ich habe Angst. Muss…

Not the rose tinted anything

I am not even being dramatic (okay maybe just a little bit) when I say I had two near death experiences this week health wise.

Firstly, my tank is so full ❤️ my baby brother is here for a month long visit and I am flying high. You have no idea how much this means to me. 🥺 It is so much more than I ever EVER ever would have expected. It wasn’t even something I put in the field of vague hopes. And he did it without me even asking. THAT my friends, is love. I am so blessed.

***has a little break to cry first***

To show him a few of our experiences and a glimpse into the things we love about Germany we’re a bit limited in what I am actually able to do. I can’t go near crowds (severely compromised immune system) and I’m often nauseous and exhausted without any warning, but we work with what we have. And he really doesn’t have touristy expectations anyway.

Last weekend we had a small braai in the fabulous spring weather and we took him on a ice cream bike ride to Wienhausen and back. I went on the Escooter and was planning on just sticking to my dietary limitations as far as possible. Haha…the temptation was too much for me and I overdid it and had a very proper absolutely delightful cheat day. I ate everything I wanted and lots of it. Once I took just a small bite I couldn’t stop myself. At that stage I regretted nothing, and I was YOLO-ing up a grand storm.

And then I learnt a very hard lesson the next day or two. One cannot eat a bland, almost baby food diet for a month and then throw yourself at a regular diet for a day without severe consequences! Clearly even after radiation I will have to ease back into regular food. My stomach was very angry at me and I was stuck in the bathroom for more or less two days while it tried to turn me inside out and scrub me with a very painful purge. Apparently I smelled like I was actually decomposing! I won’t be doing that again, lesson learnt. It was WILD…I did it to myself…and I deserved every bit of suffering and then some. I “worked” through five whole rolls of loo paper in a day, my ass was on fire! I passed the don’t trust a fart phase early in the day and got stuck there for a very long time.

The second near death experience came courtesy of my non existent immune system. Nicola brought home a cough, Andy picked it up much worse than she had it, his turned into a booked off for the week bronchitis, and I got it next pretty badly. This now on top of my tummy troubles which were self inflicted. Monday night I had such chest pains and trouble breathing that I very strongly considered going to the emergency room. I think the only thing holding me back was that I didn’t want Nicola to feel like she caused me ending up in hospital, or worse dying even. I used every over the counter thing I had in the house trying to sort it out and I had some relief, not much but enough to give me hope that I could maybe not die from it and try and downplay how bad I was actually doing. I didn’t sleep at all that night, I just focused on trying to keep myself breathing somehow, even if it was small shallow ones that hurt like hell.

The next day the house doctor wouldn’t give me anything in case it interfered with my cancer treatment and when I had my daily radiation appointment I first reported it to the service point doctor to see what they thought I should do and if I should book in or not. The doctor didn’t seem overly concerned at all, I must have looked a lot better than I felt 🤷🏻‍♀️. She said if I develop a fever or what I cough up turns yellow or green, then go to ER and get atmitted. Other than that treatment carries on as is and I should drink lots of tea and steam often.

Okay then.

So I did that, and thankfully each day I did actually feel much better than the first day where I really battled to breathe. Somewhere in this mess it seems I still have a small immune system after all! Yay me.

The morning after I had my third chemo session the station head nurse took me aside to kak on me because I apparently tested positive for para Influenza number 3 and I should have been in isolation and not even had the chemo at all this week and I endangered the whole ward by coming in. I said hey… sorry that really wasn’t my intention but I was operating on your own doctor’s instructions after I reported at the service point on Tuesday. She was mad as a nest of bees, but redirected her righteous wrath at the doctor now and not me at least. She put a mask on me and sent me to my corner while she went about “consultations’ with her new target.

They decided it would be best if I left as soon as possible and every treatment I had scheduled for the rest of the day got pulled forward to the next hour to help me get the hell out of there quicker. They can actually move at a remarkable pace when properly motivated. 🤣 Apparently next week I am being tested two days before check in and if I’m still positive the chemo will only happen the following week. I think we should be fine by then, but we’ll see. As always I will let myself be guided by the advice of my medical team, even if the one doesn’t always seem to know what the other is doing.

I apologised to all my roommates if I accidentally endangered them, they were not worried at all and took it very graciously. One even told me she had the same thing last week and they stuck her in a room for 10 hours while they waited for test results to come back. By the time they came in negative and she was released from isolation it was too late to start treatment for the day and they made her stay overnight to be ready early the next day. She shouted at them and threw a lot of middle fingers around, telling them they’re waisting her time and she could do nothing at home too, where the food was better and her bed more comfortable.

I’m guessing her performance is why they’re testing me two days before planned check in and not sticking me in a small room for a day. No complaints here!

And so…we live to fight another day. 😉

And when you blink…

A month in faces. As you can see it’s been quite a ride!

I don’t always get to yellow (happy) but if I can get to green (calm) I still count that as good. This month has brought a lot into perspective for me. I know everyone says you should stay positive, but there is also this thing of toxic positivity. Having stage 3 cancer is not exactly a laughing matter, and it’s okay to not be okay sometimes.

Everyone keeps telling me how inspiration they find me and how I seem to be sailing through this and staying so positive. To me it definitely doesn’t feel like I do that every day. My own perseption of how I am is calm, and maybe it looks like I’m positive because I am able to laugh at the funny things that happen along the way (there are plenty) and my retelling is always tongue in cheek.

After three chemo sessions that come with overnight hospital stays, I also had the opportunity to meet quite a few fellow cancer patients. Even a few with the exact same cancer as me, down to the same stage. I can say without a doubt that I am lucky because if there was a be positive race I would be far in the lead, and I am definitely having the least amount of side effects and I am never in pain (so far). They all bitch about the level of care they’re receiving and I feel very well taken care of at all times.

I’d like to think that if there’s any mark I leave on my fellow patients it’s showing them gratitude and getting a giggle out of them when the opportunity arises. I feel quite confident that I leave them all in a better condition than what I found them. 😊 That means a lot to me actually.

A week of firsts

I’ve had three sessions of radiation and one session of chemo this week. Some of it has been pretty traumatic and some of it was fairly easy. As is to be expected, getting to know the lay of the land has actually been the most challenging.

I rocked up on Wednesday with my overnight bag and my folder full of paperwork, ready for action. It said that I was supposed to check in for chemo and that happens at station 33. No specific time mentioned, so I went early and set off to find 33 and get settled in before my radiation session which was scheduled for 14:00.

I caused a lot of chaos at station 33. Nobody told me you actually have to wait till they call you to come in when there’s an available bed, so station 33 wasn’t ready for me and sent me on my merry way again. I found myself a waiting room and read more or less an entire book on my Kindle app feeling pretty grumpy.

At 13:45 I wandered down to the Service Point to clock in for radiation. That actually went quite well. I was told that the first time takes a bit longer because they need to program the settings, round about 45 minutes or so, but I was done in 20.

Thursday morning we got the call that a bed was ready for me now, so I chucked something in the slow cooker for Andy and Nicola and set out once again with my bags. I arrived at the Service Point only to be sent to patient registration instead for check in. It went very smoothly there at least and they actually gave me a map to station 33. I mean I found it by myself the day before eventually, but I thought that was a nice touch.

Settled in with my new roommate Katja, who was super nice and told me loads of things that are actually really handy to know. She is an absolute angel, and I was really lucky to get someone like her on my first stay. I met the doctors who administer the chemo and the one in particular I got on well with. I was scared spitless for this first, but he got me so relaxed that we ended up cracking jokes (about my pain to come). Maybe that approach is not for everyone but it really took my panic levels down to a manageable level and I appreciated it.

For my next trauma I went for what I thought was going to be an easy peasy second round of radiation. It turned out there was another internal procedure no one bothered to tell me about and I got to know it the kak way. The “Service Point” closes at 16:00, my appointment was for 16:10, so no one there of course. There was a sign up saying to have a seat and you would be called. So I did just that. Nobody called. Other people arrived with a appointment roughly an hour after mine, they got called, still nothing. So I went to radiation to see what was potting. Keep in mind that I’m not supposed to go in with an empty bladder and I have to drink at least 2 liters of water a day. My eyes were watering by 16:00 already and this was now more than an hour later! There was an above average chance that I was going to make a puddle on their floor or worse even, in their machine once they put me in it.

No one even gave me a chance to ask a question. Station 17 said they were done for the day, go to 15. And 15 said they’re full, wait to be called. I had an epic wobble and phoned Andy to sob in his ears. He recommended I shout at them, just then someone from 17 walked by so I shoved the phone in her hands and unleashed Andy on them. I am not sure exactly what he said to her but it must have been good because I got bumped to the front of the queue, four doctors came to apologise to me and they gave me chocolate as a peace offering. 🤣 Andy is my hero.

So it turns out the other procedure which isn’t written down anywhere, but which everyone except me knows about apparently is after 16:00 you have to report to station 15 to let them know you are there. If you’re booked into the ward for chemo your appointment for radiation gets changed automatically to a later one and they phone station 33 when they want you to come down instead. After the second treatment I felt lightly sunburnt, but I am applying all the lotions and potions they gave me and the feeling was thankfully short lived.

Back to the ward, where I found another bread dinner with some sort of ham that I am not allowed to eat anyway. You’d think that since they gave me the restrictions, they would also give me the food I’m allowed but apparently not. Whatever… The doctors told me they have no control over catering and I could either eat what I got and hope for the best or bring my own food. (Aha, now it’s really starting to feel like a government hospital!)

The chemo doctor popped in again to discuss potential side effects with me and to prep my IV drip. One paragraph in he said something that I couldn’t quite understand, so I asked if he could go a bit slower or maybe just explain that bit in English. He switched everything to English and because of my accent he even threw in a bit of Dutch 🤣 which then automatically triggered me to switch to Afrikaans. We had a good laugh and carried on in English for which I was very grateful.

Look, I wasn’t expecting to feel like a million bucks going through any of this treatment, so some of the side effects I already knew about, but a few new ones came up and of those the most memorable for me were the following: I could potentially lose my hearing. Not very common but it can happen. I could end up with nerve damage in my hands and feet, they could end up dead or alternatively with permanent pins and needles and I was to report anything like that to him immediately if I felt it. I asked if he could fix it and he said no, but he could slow down treatment to see if it helps limit the damage, other than that he could offer a opportunity to be heard and he could record my reaction for science. Great. Most memorable potential side effect was that this chemo in combination of the radiation would very likely sort out my cervical cancer, but there was a chance that it would cause me leukemia in about 20 years time. Without the treatment I would not get to those 20 years in any event, so it was probably the better of the two options.

First chemo started on Friday. It was tough. More in the head than anywhere else…okay also maybe in the veins because my funny doctor really sucks at sticking in needles. He apologised but I told him not to worry, he had the next 2 months to practice. We had another chuckle about that. He was lightly tapping my arm to try and piss off a vein into showing itself and he apologised again for hitting me haha, as if. I said he can’t call that a hit and he should put his back into it. 🤣 I ended up with two drips. One on the elbow almost and one on the other side in the crook of my arm. Both of these spots I have never been dripped in, and I can see why. I was bed bound for the day because the stupid things were very unstable. They kick you off with 1.5 liters of saline, then the poison, then another liter of saline and then about half a liter of glucose solution. It took forever to get all that in even with two arms going.

At first I was fine, other than my legs swelling up from all the water, and I thought that for a first time I actually expected much worse. The side effects only really hit me by Saturday when I was home again. Waves of nausea and waves of exhaustion. I am sometimes riding the waves and sometimes they are riding me.

This is going to get a lot worse before it gets better…I am aware. Only one way and that is through.