Someday, when I am long gone, someone will be idly flipping through the hard drive of this laptop and discover a piece of writing entitled ‘October 17th’. Opening it will reveal about three closely-typed pages that begin the story of last Thursday’s appointment with the surgeon and oncologist to decide a date for the operation. The story will contain accounts of spilled brown rice tea and parting-saddened hospital receptionists, and an incongruous episode with the dishy deputy ambassador at dance practice (Wholly unrelated story, but nicely described). It will be noted with mild puzzlement that the story never reached light of day. Well, I just never quite got round to finishing it. It’s been a busy old week.
We’ll back-track on a few points here, though, just so we’re up to speed generally:
A week ago Monday, I was back at the hospital for the follow-up MRI and ultrasound. Describing these in any great detail would be redundant, because with minor exceptions, they followed the pattern of the previous ones: metallic burrito (In addition to the Sound of Silence, this time the playlist of the damned included Wind Beneath my Wings, and She’s a Maniac. No lie.) and a lively chat with the ultrasound techie, wherein I discovered that she wants desperately to travel, especially to Italy, and is terribly sad that her English is not better. Again, I would say that she does pretty well with it.
This time, I did have a far stronger reaction to whatever juice I was given before the MRI, which was exciting. I remember having been a bit disorientated by the last two- well, it’s an unsettling thing, hanging upside down for an hour and a half with all the bells and whistles and Simons and Garfunkles kicking off- but this time when I was helped from the platform, it felt like I was on a space walk. This feeling lasted for about two hours, which means that I was back at work and attempting to carry out lucid conversation long before I probably ought. I am not entirely sure how I got back to school, but suspect that there was a taxi involved, because that’s what always happens, and know that I saw the principal and my friend Kim in the school office when I got back, because I always stop to check in when I get back. The only thing I remember saying is something like ‘I see four of you’ to the principal; perhaps not a wise admission when one is about to head back into lessons. I know that I went to lunch, and I have a vague recollection of the woman sitting across from me. All else is surround by a cotton candy haze. Honestly, I don’t know what else happened up until the faculty meeting after school, and I’m still just peeling back the layers of what may have transpired there. I think I volunteered for something, but am still not entirely clear on what. Someone will tell me, I’m sure.
Other than that, getting ready for Mum and Bert’s arrival, Parent-Teacher conferences, and a new, special treat in the form of an ingrown toenail (looking around for a cosmic imp to wave my fist at), the next few days felt busy but uneventful. On Wednesday night, I did happen upon a news article about a new radiation treatment being explored in the States, wherein one gets a large dose during surgery itself, rather than thirty small doses six weeks later. The treatment is as effective as the regular treatment, but does less damage to the heart and lungs (which was the point when I first discovered that my heart and lungs could be damaged by the radiation treatment, incidentally) and means that the patient doesn’t have to travel back and forth to Inha University Hospital every day by bus for six weeks over the Christmas holidays, ruining any plans she had for exotic getaways. Seriously, that’s what the article said.
I hunted up a few more pieces of information- there was plenty online- and bookmarked them.
Thursday morning rolled up. Because of conferences, I had no lessons to plan, so once I had printed out the articles from the night before, I did not hover around school for long before getting a cab to the hospital. Once I arrived there, I started to absentmindedly pick away at the blog update, but got distracted by the story of dance practice and the dishy deputy ambassador, so never quite reached the end of it, and soon was back in the oncology department for my meeting with Dr Lee. She was in high spirits, as usual. The tumour had shrunk once more- not as dramatically as the first time, but it was still small enough for her to happily confirm that we were ready to remove the remnants. I’d asked her for some copies of test results to send to my insurers, and she bustled her receptionist around to locate them. Then with a jolly wave, she was ready to pack me off to speak to the secretary about the admission date and pre-op tests. Before she shoved me out the door, I tried to distract her attention with a question about the intra-operative radiation treatment and was told, in essence: ‘Thank you very much, you silly woman, but we know what we’re doing and we are actually pretty good at treating cancer- so there.’
Or something like that. She may have suggested that there was nothing to worry about with my heart and lungs. It does irk me somewhat that I am discovering the potential for damage at this stage of the game. Ah, well.
From there, I was handed off to the lovely receptionist who giggles madly every time I show up, to pick up the requested test results. While we waited, she valiantly tried out every English word she had on me, including asking whether I was married. She was a bit baffled by my response, but to be fair, the whole thing has been pretty baffling to me, too. However, we soon landed on the safer territory of children and finished up on easy terms. I will organise a thank you card for this lady. I think I have caused her some undue stress over the last five months.
She sent me off to the surgeon, who would be the one to confirm the date of the operation. Once again I found myself sitting across from Dr Cho, the gentleman who had started the whole bizarre ball rolling way back in May. Let me just briefly re-cap some of the highlights of my encounters with Dr Cho:
- he thought I was Russian (though apparently, I have excellent English)
- he told me that I ‘could’ have cancer
- he told me that I DID have cancer, and wondered why I was surprised by it
- he told me that I would be made desperately ill by the chemo
- he located my long-term prognosis on a website
I must tell the truth: I really thought that there were more highlights. Maybe it’s just that these ones were pretty significant.
He started the conversation:
Dr: How are you feeling?
P: Pretty well, thank you.
Dr: Have you been badly ill from chemo?
P: No, it hasn’t been too bad. Rather depressed, but that’s been the worst part.
Dr: (Looking pointedly at my head and rubbing his own) Well, you look great.
P: Hey, thanks! So do you!
So we started chatting about the surgery. His manner was casual, almost laid-back. He opened with a stunner:
Dr: So, how do you feel about the hysterectomy?
P: Eeerrrrr, what do you mean?
Dr: Well, do you want it?
P: (full five seconds of stunned silence) You mean I get a CHOICE?? I’ve been told that I need it!!
Dr: Well, it’s a big step...
P: ARGH!!!
I eventually got him round to the point that both the gynecologist and the oncologist have told me that a total hysterectomy is recommended: the gynie because of the fibroid that ‘might’ be cancerous, and the oncologist because the breast cancer is hormone related. In short, whether I want one or not, I think I probably ought to have it. Cleared that up.
Next, he opened up my test results from the Monday. We had another few hilariously awkward moments, because it turns out that he identifies these results from... well... something other than my name. He usually identifies my bosoms from, in fact, the pictures of my bosoms. Like fingerprints, every set is unique. I had not realised exactly how accurate this explanation was until I watched him in this appointment. He paid little attention to the names at the top of the screen (Just as well, because apparently my name sounds Russian) and instead looked at the size and shape of... well, you get the idea. He may even have also been trying to locate mine from the density of the tumour this time. This, pleasantly, did not help him overmuch, because it was so hard to see what remained of the tumour- it meant that he took far longer trying to determine which slides were mine than seemed necessary, and spent a comical couple of minutes flipping between test results and shooting glances over at my chest to try and - literally- size up which ones they were likely to be. When he finally tracked them down, he was pleased to say that the tumour was very nearly gone, and that the operation was still necessary, but just to make sure that all remnants were removed. Nice. Guess this means I get to keep the nipple after all.
He then asked me when I wanted the operation. This was as much a surprise as the debate over the hysterectomy, because in my previous surgical experiences, I have generally had to fit my schedule around that of the healthcare professionals and had no say in the timing of it whatsoever. I tentatively suggested Monday the 28th, knowing that it would give Mum and Bert a week to get somewhat settled before being hit by all the hospital shenanigans. He was happy enough with that, and quickly tasked his secretary with finding out if it also worked for the gynecologist. A quick phone call later, it was in the diary. I was told that I would need to speak to the gynie about the hysterectomy briefly, and then come back.
Speaking with anyone involves another trip to the payment desk first. I trotted back to the International Clinic for this, then returned to the Cancer Centre to meet the man who had told me that there was no point in keeping my uterus because it was ‘only for making babies and (I) wouldn’t be doing any more of that anyway, would (I)?’ Jerk.
It was definitely easier to talk to this man across the desk than from the examination chair. However, we did need to take a few minutes to re-establish that he would be removing the ovaries as well as the uterus (Again, sigh of despair that none of my doctors ever seem to talk to each other) and to discuss whether there would be any hormone replacement afterwards, as I am very concerned that the hysterectomy will change me into a seething mass of super-charged vitriol. I only say this because it is what post-natal depression did to me. There will NOT be hormone replacement, since the cancer was caused by hormones in the first place. (Yes, I know- DUH!) I also had a few questions about recovery time.
P: How long do you think I will be in hospital?
G: If you were just having a hysterectomy, I would say maybe three days. I would say that you could return to normal activities by (consulting calendar) maybe November the 7th.
{A favoured friend cheekily asked me, when I was recounting the story later, whether I knew what the doctor meant by ‘normal activities’. “Yes, of course,” I replied. “Macrame and needlepoint. What else might he have been talking about?”
Funny how quickly ‘macrame and needlepoint’ have become a euphemism...}
When I returned to the surgeon a few moments later to finalise arrangements, I mentioned to him the radiation treatment that I’d spotted the night before. I was a bit more reassured to learn that he knew exactly what I was talking about and thought it sounded like a good thing to explore, but unfortunately they weren’t able to at this time because of lack of necessary equipment. Well, that’s okay, then. I asked again about the expected hospital stay and recovery time. He indicated that a great deal would depend on me: how I was feeling, and what my own personality was like. Hmm...
When I was five years old, shortly after the birth of my brother John, I had appendicitis. It was mid-December, 1973, and Mum had not long since returned from hospital. She tells me that she had heard me crying in my bed before realising that it wasn’t a nightmare and come in to find me doubled up, reluctant to wake her because she’d just had a baby and was really tired. Yes, I was adorable. The stories about my stay in hospital still make the rounds. I apparently was not happy when she tried to make me relinquish the doll that was given to me by the group donating toys to children stuck in hospital over the holiday, for example. I also told another patient- a grown man- that he was going to Hell because he smoked cigarettes. I was five. Please.
I do not remember any of those things. I do remember going to the doctor in the middle of the night with terrible pain, I remember being examined, I remember my dad being very upset, I remember my hair being washed and the mask they put over my face in the operating room and waking up later in the recovery room, and my babysitter bringing me a Sherlock Hemlock finger puppet. I also remember getting up one morning, dressing myself in a red tartan skirt and wooly tights and black shoes, and walking down to the ward desk, where I looked up, up, up at Doctor Large and said, ‘I am going home today.’ I remember him looking waaaaay down at me (Doctor Large was, indeed, large) and saying ‘Well, I guess we had better call someone to come and get you, then.’ He picked up the phone, dialed a few numbers (This was in the days when one actually dialed a phone) and said to the person on the other line, ‘I have a young lady here who informs me that she is going home today.’
I guess the bossiness appeared early.
But I was adorable.
So when the doctor tells me that the length of my stay depends on me, I am hoping that I’ll be in a position to put on a red tartan skirt and wooly tights and black shoes within about a week. It would be much nicer to recover at home than in a nasty hospital ward, especially with my mum cooking back at the flat.
So, once the last instructions were issued about when to check in and how, I was released on my own reconnaissance and headed once more for school. En route, I texted anyone with a vested interest to tell them the official date for the surgery, and then emailed my mother and Bert to let them know that we’d got the timing for the visit right. I also resolved to buy a large marker, and draw circles and arrows on myself, identifying all the various parts of my body that require removal.
The sense of relief at having the next stage of treatment finally booked has been enormous.
I’ll start on news about the family unit visit another time. Maybe I’ll even pick up the tale of the dishy deputy ambassador at dance practice. Really, there's nothing untoward in it, and it’s a pretty good story.
Wednesday, October 23, 2013
Tuesday, October 8, 2013
Can't see all obstacles in my way, but a few are starting to appear...
The study into the Patrician condition continues, as the haze starts to clear. The deep blue funk seemed to max out at rehearsal on Monday night, when my mood reached its lowest, and I ended up being properly ill for the first time. It wasn't a great rehearsal. My attitude did not help. However, to be made actually nauseous by the amps' feedback- well, that was a singular experience.
To what extent do apologies ever help? I can tell that there is a shift afoot, because I re-read that last furious and futile post, and am sorry for it. For the last four days, I had not cared. Does regret mean that I will soon be feeling better? What will better look like, anyway? Will I be any cuddlier?
Time to tuck the demons back away, definitely. They make a terrible mess on the carpet, and never put their toys away when they throw them from the pram. The sun is coming up, we have the day off, and I am going to Seoul with a couple of the friends who wait out the rollercoaster ride patiently, and still pick up when I call afterwards.
To be fair, most of you do. Thank you. Who knew that the people who would suffer most through my chemo would be everyone around me?
What else is new? I've had a long talk with little brother Bert about the impeding visit from home, and we've decided that he and Mum should go ahead and book the tickets for the 20th of October, but take out cancellation cover in case the oncologist decides that she wants to cow the tumour into submission for a while longer. We who have no control are attempting to stick a pin on the fate map. Bert will stay for two weeks, and Mum for a month. I think we will all soon learn how small this apartment is. However, the planners amongst us need to do something- anything- to start moving this wagon forward. I'm looking forward to being on the other side of so many things- and while it might sound like the family visit is one of them because I'm being a jerk, that isn't strictly true. I might belly-ache, but it's in part because I'd like Bert and Mum to visit when I am healthy and when they don't feel like they have to. It would be great to have Bert here when I can play properly and get him into all kinds of trouble- not when I have to be stuck in hospital. It would be lovely to show Mum all the wonderful weirdness around here, and to take it nice and slowly so that she can savour the adventure. She always wanted to travel, and it is a shame that her first trip outside the English-speaking world has to be while I am not well enough to really make it brilliant for her. On the plus side, though, she will see that I ain't dead yet. That will put her mind to rest.
We just had two days of PD at school; nicely done. I didn't learn much new from it, but remember that I am getting pretty long in the tooth. I also did a course in adolescent psychology last spring, and was able to be one of the smug guys at the back nodding knowledgeably and indulging myself in attempting to win all the demonstration games. I say 'games'. We all know they're not games, not really. Not when someone ELSE thinks they might win! The presenter was entertaining, with just enough irritating catch-phrases to make me gently judgmental (and that word has no 'e'? Seriously?) The breakdown in my internal monologue was not dramatic enough for me to cause too much offense, and he read my body-language well enough to avoid using me in a demonstration of adolescent ennui. It was a little comical. People could see him heading towards me, ready to rub my head or nudge/poke/wrestle/lion-cub-on-the-Serengeti-rough-house, and there was a kind of collective intake of breath and tension spike all around the room. That, combined with the pulsating radioactive psychic force-field that I was emanating, somehow caused him to veer to the right suddenly, and unleash said demonstration on Catherine instead. Really should send her a card. Her presence spared me a prison sentence. Funny how many people commented on it afterwards.
A note-worthy side-effects development: having the extra week between the last two chemo cycles resulted in a sudden hair re-growth. For a couple of days, my eyelashes were visible again, and my eyebrows started to thicken up. They've all fallen out again since, never fear, but how interesting that the patterns of growth are so quickly restored. Makes me pause for a moment to consider how vital it is that the tumour is completely eradicated. If any remains, it will simply grow back. Yes, I know, it seems obvious. It is not so clearly illustrated, though, until one sees eyelashes where there were none the previous day.
To what extent do apologies ever help? I can tell that there is a shift afoot, because I re-read that last furious and futile post, and am sorry for it. For the last four days, I had not cared. Does regret mean that I will soon be feeling better? What will better look like, anyway? Will I be any cuddlier?
Time to tuck the demons back away, definitely. They make a terrible mess on the carpet, and never put their toys away when they throw them from the pram. The sun is coming up, we have the day off, and I am going to Seoul with a couple of the friends who wait out the rollercoaster ride patiently, and still pick up when I call afterwards.
To be fair, most of you do. Thank you. Who knew that the people who would suffer most through my chemo would be everyone around me?
What else is new? I've had a long talk with little brother Bert about the impeding visit from home, and we've decided that he and Mum should go ahead and book the tickets for the 20th of October, but take out cancellation cover in case the oncologist decides that she wants to cow the tumour into submission for a while longer. We who have no control are attempting to stick a pin on the fate map. Bert will stay for two weeks, and Mum for a month. I think we will all soon learn how small this apartment is. However, the planners amongst us need to do something- anything- to start moving this wagon forward. I'm looking forward to being on the other side of so many things- and while it might sound like the family visit is one of them because I'm being a jerk, that isn't strictly true. I might belly-ache, but it's in part because I'd like Bert and Mum to visit when I am healthy and when they don't feel like they have to. It would be great to have Bert here when I can play properly and get him into all kinds of trouble- not when I have to be stuck in hospital. It would be lovely to show Mum all the wonderful weirdness around here, and to take it nice and slowly so that she can savour the adventure. She always wanted to travel, and it is a shame that her first trip outside the English-speaking world has to be while I am not well enough to really make it brilliant for her. On the plus side, though, she will see that I ain't dead yet. That will put her mind to rest.
We just had two days of PD at school; nicely done. I didn't learn much new from it, but remember that I am getting pretty long in the tooth. I also did a course in adolescent psychology last spring, and was able to be one of the smug guys at the back nodding knowledgeably and indulging myself in attempting to win all the demonstration games. I say 'games'. We all know they're not games, not really. Not when someone ELSE thinks they might win! The presenter was entertaining, with just enough irritating catch-phrases to make me gently judgmental (and that word has no 'e'? Seriously?) The breakdown in my internal monologue was not dramatic enough for me to cause too much offense, and he read my body-language well enough to avoid using me in a demonstration of adolescent ennui. It was a little comical. People could see him heading towards me, ready to rub my head or nudge/poke/wrestle/lion-cub-on-the-Serengeti-rough-house, and there was a kind of collective intake of breath and tension spike all around the room. That, combined with the pulsating radioactive psychic force-field that I was emanating, somehow caused him to veer to the right suddenly, and unleash said demonstration on Catherine instead. Really should send her a card. Her presence spared me a prison sentence. Funny how many people commented on it afterwards.
A note-worthy side-effects development: having the extra week between the last two chemo cycles resulted in a sudden hair re-growth. For a couple of days, my eyelashes were visible again, and my eyebrows started to thicken up. They've all fallen out again since, never fear, but how interesting that the patterns of growth are so quickly restored. Makes me pause for a moment to consider how vital it is that the tumour is completely eradicated. If any remains, it will simply grow back. Yes, I know, it seems obvious. It is not so clearly illustrated, though, until one sees eyelashes where there were none the previous day.
Friday, October 4, 2013
Infamy, infamy- everyone's got it infamy. Or: Am I Blue?
Yes, it's been awhile. I know.
In the last post, I remarked - at some length- on how increasingly fragile I've been feeling throughout the latest bouts of chemo. At mid-cycle in the most recent round, I can see clearly that I am at my lowest at about day eight, and it has been getting worse as the treatment has progressed.
I haven't been keeping this up to date, despite there being a lot of catching up to do. There is a multitude of reasons for my absence, the first being that I am so flipping tired. The chemo has been tolerable, as I was promised, and since the first day I took off after the first round, I have missed no time at all due to illness. Rather proud of that. I am not looking for congratulations, however. I have not always been Princess Perky at school, it must be said. I've managed to keep a lively presence in the classroom, however, and when I'm called upon to perform. However, I don't recommend sharing company with what is left over at the end of the school day. Seriously. I don't even like her.
Another reason is my passive aggression. I try to control it, but not to deny it. I started the blog in the very beginning because I was exhausted from telling people how I was feeling. What has become clear is that I end up having to tell folks anyway. Some are people who don't read the blog because they haven't been invited to. Fair enough. Not everyone, however. Some people say 'I haven't bothered to read it, so just tell me.' Errrrrr.... So P-A Pat says, well, if you aren't going to read it, what's the point in writing it?
Further, I have been using this as an opportunity to discuss a few things that, being non-confrontational (to which I also readily admit) I do not feel equipped to say in person. I try to do it in a lighthearted fashion, because I am non-confrontational, and by pointing out that my issues are MY issues primarily and not the fault of others- because I am non-confrontational. Things like: I don't like being touched. I submit that I have qualified this extensively, admitted that I need to be more understanding about other people's needs for contact, stated categorically that I like 'certain kinds' of touch, yaddayadda. But ultimately, it is a thing. My friends and colleagues have joked about it, some have even asked whether they are close enough to the circle to be allowed to give me a hug. That's fine; that shows they are taking the piss out of me as much as I am myself. Some of them have even (and I love them for this) spoken quietly to a few others who are not quite so in tune with my frequency, so to speak, and let them know that I don't welcome the physicality. The fact that these others have been told and continue to put an arm around me, stroke my arm, rub my back... I could weep. It makes me WANT to weep. If I speak about it, I am the bad guy. I do not want to be the bad guy. Bloody Hell, I hate being an oldest child sometimes.
Another impediment to more regular updates is the conflict between wanting to be completely honest in the entries, and the need to tread carefully around other people. I am self-censoring. I don't write about everything here. There has been no break-down of Richard and the events surrounding the divorce. I will not subject either one of us to a public laundry-airing here. That would be beneath me. I do not complain about work- and my remarks about colleagues are limited to stories about comical incidents, their wonderful-osity, or their tendency to maul me. Where there is opportunity to cast aspersion, the identity of the relevant parties is withheld, to the point that the wrong people think I'm writing about them. Genuinely, I believe that to be explicitly nasty about others in these pages would be on a level with political bickering and name-calling on FB. I won't engage in it. Also, my mother reads this now, so I am not swearing as much as I might possibly otherwise. Furthermore, I am not cataloguing all the anxieties she and I are sharing -from both sides- about her upcoming visit. Mum, we're both stressed, and we both know it. There. Said that much. Clearly not detailed.
This also relates to the final reason for my quiet this last month. I haven't got much nice to say, and therefore should say nothing at all. Despite how much my appearance might belie it: this whole business is wretched. I HATE THIS. I am filled with such rage and self-pity that I can hardly bear sharing space with myself. I hate being weak and breathless and tired, and I hate the pains in my chest and the aches in my bones. I hatehatehate being bloated and ugly and bald, I hate seeing myself in the mirror, nasty and hairless and worm-like. I hate the stares in the streets and the giggles. I hate that I am losing my words, that I am so over-sensitive, that I am not as good in the classroom, that my mind is turning to mush. Lord, Lord, I miss my mind!! Being stuck here at Christmas makes me want to spit tacks; everyone else had such a great summer away and will have a great winter away, too, while I am here getting zapped and sapped. I hate people sneering that I am on 'weak drugs' because I am obviously not properly ill from these ones. I hate being asked how I am, and then having the speaker tell me how lucky I am because their neighbour/friend-of-a-friend is so much worse off than I am. I know that I am lucky! I know it! Do I need survivor guilt too? Really???
It makes my gut stew to send Annie home without me to look at universities. I hate being crippled by fear- that I'll have to stay here forever, that I'll never get another job, that I will lose the one I have, that I won't be able to pay for her schooling, that I'll never lead again, and very worst of all- that this is who I actually am.
Now, a girl gets a bit down sometimes, yes. But Holy Mother of God.
And you don't really want to read this, do you?
So, there you have it. That's why there hasn't been an update. I want to be positive, to keep things light, to entertain. However, these demons are voracious, and (in part, at least- it's been a pretty grim year all round) chemically induced. But if I am to be honest, and I strive to be, then this is 'how I am feeling' right now. And I can never say it all out there. Parts, yes. Thank you Alex and Gerald and Sarah and Leslie and Amy and Ann and Tonya and Michael. Not all, though. Even here, I am with-holding some of the venom. And if you are at all even a little bit like me, then reading this has made you feel worse. I don't want anybody to feel worse. I know that I am ungrateful. I know that nobody likes to hear complaints. I know that there really is no way of winning in any discussion with me right now. I know I shoot any positivity in the foot.
Sympathy sets my teeth on edge. Honestly. Please, please, believe this. As can be seen, I am feeling sorry enough for myself that I don't need anyone else's help doing it. Molly-coddling infuriates me. I do not need to be protected or looked after. I know this is a tall order. Folks are, in my experience, basically trying to be kind and helpful. The fine line that needs to be walked is the one between being helpful and making me think you don't believe I can cope. I am sorry, but it is not a line that I can negotiate for anyone else. I can advise, however. Offering me a lift home from the hospital is great. Telling me to come visit you in Malaysia or France or Lord knows- lovely. Passing me a serving of your jambalaya when you've got leftovers? Ah, Piper!! You beautiful woman. Picking me up sparkling water when you go shopping, or understanding when I have to cancel dinner last minute or telling me that you think I'm hilarious when I MC the assembly - things that are NORMAL, and that you would have done anyway for a friend. That's the best thing to do. Behave normally. When I slip in an awkward comment about tumours, I'm not looking for sympathy or help, I'm just including the other crazy part of my reality in the conversation, the way one would ex-husbands or an on-going issue with the electric company. I am not asking for comfort. I am being a smart ass. I am, actually- as much as the above paragraph evidences the contrary- coping. I am. I WILL. I will cope because that is what one does, NOT because I am strong or courageous, and I don't want to hear that I am. I'm not. I was once. Not just now. (In truth, is sometimes wonder if the cosmos decided that my thinking that I was made it decide to chip it all apart. I do not know, and it is- again- entirely possible that the cosmos doesn't actually have me at the centre of its planning.)
I do know, however: this is not who I once was. I am much diminished. Blame the meds, blame the cosmos, blame it on the rain, blame it on the boogie, no one ever is to blame... Just don't feel sorry for me. Even when I set the demons loose.
A long delay. So why write now? Because -as I am being honest- I do need to vent, and as I am writing here primarily for myself, I am becoming less cautious about upsetting others or bringing them down. Not a good sign. I admire and respect you, gentle readers- and would reallyreally like to know who has been reading this in Switzerland and Poland- but your presence in this moronologue is entirely voluntary, and has been since the beginning. You might not have been expecting the onslaught of negativity- neither was I when I started out here. (While we're being honest, I wasn't expecting a lot of things from chemo, the other most recent being that I'd also have no hair in my nose. Imagine how runny a person's nose is when there is no hair in it!! Too much information? Well, you are a volunteer here- stop reading if you want!)
And the rant is cathartic. That is why I now do this. If you are still hanging on, and still interested in knowing, then I shall take a deeeeeeep breath, and tell you what's been happening over the last month. Maybe you should take a deep breath, too. Please don't feel yelled at. It's the cosmos I really have the issue with. And a couple of back-rubbers.
Since the last post, in addition to my brain turning to mush and my equilibrium taking a big shift off-centre, I've had another round of chemo and appointment with the oncologist. I've also been trying to make some plans and keep the planets in their orbit. I mention both in that sentence together, because each has proven to be as impossible and out of the scope of my ability as the other.
The oncologist continues to be pleased by my progress. The tumour is still shrinking, and she needs to give the breast a right good going-over even to feel it any more. Encouraging. There will still be an operation, and she still will not commit to a date. The next MRI is scheduled for Monday the 14th (the day we Canucks will be celebrating Canadian Thanksgiving- woo hoo!) and the follow-up appointment with the surgeon is on Thursday the 17th. I will be told whether the operation will happen the next week or not. The oncologist is pretty confident that it will be. Her vague, this-would-be-a-plan-if-I-could-commit-to-a-plan calculations have the follow-up chemotherapy starting after the operation, and finishing up one year later. (Yes, this does mean that I might be wise to stay in Korea. The possibility of looking for another job is adding to my anxiety base.) She said that there is a 20 % possibility that I will not need follow-up chemo afterwards, but that basically I would. (Yes, I know) She then had a quick look at the calendar. My radiation treatments are, if all goes ahead according to her this-would-be-a-plan-if-I-could-commit-to-a-plan, going to commence on December 12th. Yes, sweet reader, that is the day before the start of the Christmas break. My great fear has come to pass. I will be spending another long holiday here. Bugger. In case I did not make my feelings on this clear, let me do so again:
BUGGER.
Prominent symptoms during this round include:
Ah, you already know that. Depression, rage, runny nose. YAWN.
In unrelated news, Annie will be going to Mongolia for Discovery Week. Brilliant!! Her school play is in a fortnight. Brilliant!! We both will be glad to be on the other side of that, I think. She will be back in the UK for Christmas, so if she rolls up unannounced on any of your doorsteps, then please just pass her a pillow and a quiet corner to crash in.
In the last post, I remarked - at some length- on how increasingly fragile I've been feeling throughout the latest bouts of chemo. At mid-cycle in the most recent round, I can see clearly that I am at my lowest at about day eight, and it has been getting worse as the treatment has progressed.
I haven't been keeping this up to date, despite there being a lot of catching up to do. There is a multitude of reasons for my absence, the first being that I am so flipping tired. The chemo has been tolerable, as I was promised, and since the first day I took off after the first round, I have missed no time at all due to illness. Rather proud of that. I am not looking for congratulations, however. I have not always been Princess Perky at school, it must be said. I've managed to keep a lively presence in the classroom, however, and when I'm called upon to perform. However, I don't recommend sharing company with what is left over at the end of the school day. Seriously. I don't even like her.
Another reason is my passive aggression. I try to control it, but not to deny it. I started the blog in the very beginning because I was exhausted from telling people how I was feeling. What has become clear is that I end up having to tell folks anyway. Some are people who don't read the blog because they haven't been invited to. Fair enough. Not everyone, however. Some people say 'I haven't bothered to read it, so just tell me.' Errrrrr.... So P-A Pat says, well, if you aren't going to read it, what's the point in writing it?
Further, I have been using this as an opportunity to discuss a few things that, being non-confrontational (to which I also readily admit) I do not feel equipped to say in person. I try to do it in a lighthearted fashion, because I am non-confrontational, and by pointing out that my issues are MY issues primarily and not the fault of others- because I am non-confrontational. Things like: I don't like being touched. I submit that I have qualified this extensively, admitted that I need to be more understanding about other people's needs for contact, stated categorically that I like 'certain kinds' of touch, yaddayadda. But ultimately, it is a thing. My friends and colleagues have joked about it, some have even asked whether they are close enough to the circle to be allowed to give me a hug. That's fine; that shows they are taking the piss out of me as much as I am myself. Some of them have even (and I love them for this) spoken quietly to a few others who are not quite so in tune with my frequency, so to speak, and let them know that I don't welcome the physicality. The fact that these others have been told and continue to put an arm around me, stroke my arm, rub my back... I could weep. It makes me WANT to weep. If I speak about it, I am the bad guy. I do not want to be the bad guy. Bloody Hell, I hate being an oldest child sometimes.
Another impediment to more regular updates is the conflict between wanting to be completely honest in the entries, and the need to tread carefully around other people. I am self-censoring. I don't write about everything here. There has been no break-down of Richard and the events surrounding the divorce. I will not subject either one of us to a public laundry-airing here. That would be beneath me. I do not complain about work- and my remarks about colleagues are limited to stories about comical incidents, their wonderful-osity, or their tendency to maul me. Where there is opportunity to cast aspersion, the identity of the relevant parties is withheld, to the point that the wrong people think I'm writing about them. Genuinely, I believe that to be explicitly nasty about others in these pages would be on a level with political bickering and name-calling on FB. I won't engage in it. Also, my mother reads this now, so I am not swearing as much as I might possibly otherwise. Furthermore, I am not cataloguing all the anxieties she and I are sharing -from both sides- about her upcoming visit. Mum, we're both stressed, and we both know it. There. Said that much. Clearly not detailed.
This also relates to the final reason for my quiet this last month. I haven't got much nice to say, and therefore should say nothing at all. Despite how much my appearance might belie it: this whole business is wretched. I HATE THIS. I am filled with such rage and self-pity that I can hardly bear sharing space with myself. I hate being weak and breathless and tired, and I hate the pains in my chest and the aches in my bones. I hatehatehate being bloated and ugly and bald, I hate seeing myself in the mirror, nasty and hairless and worm-like. I hate the stares in the streets and the giggles. I hate that I am losing my words, that I am so over-sensitive, that I am not as good in the classroom, that my mind is turning to mush. Lord, Lord, I miss my mind!! Being stuck here at Christmas makes me want to spit tacks; everyone else had such a great summer away and will have a great winter away, too, while I am here getting zapped and sapped. I hate people sneering that I am on 'weak drugs' because I am obviously not properly ill from these ones. I hate being asked how I am, and then having the speaker tell me how lucky I am because their neighbour/friend-of-a-friend is so much worse off than I am. I know that I am lucky! I know it! Do I need survivor guilt too? Really???
It makes my gut stew to send Annie home without me to look at universities. I hate being crippled by fear- that I'll have to stay here forever, that I'll never get another job, that I will lose the one I have, that I won't be able to pay for her schooling, that I'll never lead again, and very worst of all- that this is who I actually am.
Now, a girl gets a bit down sometimes, yes. But Holy Mother of God.
And you don't really want to read this, do you?
So, there you have it. That's why there hasn't been an update. I want to be positive, to keep things light, to entertain. However, these demons are voracious, and (in part, at least- it's been a pretty grim year all round) chemically induced. But if I am to be honest, and I strive to be, then this is 'how I am feeling' right now. And I can never say it all out there. Parts, yes. Thank you Alex and Gerald and Sarah and Leslie and Amy and Ann and Tonya and Michael. Not all, though. Even here, I am with-holding some of the venom. And if you are at all even a little bit like me, then reading this has made you feel worse. I don't want anybody to feel worse. I know that I am ungrateful. I know that nobody likes to hear complaints. I know that there really is no way of winning in any discussion with me right now. I know I shoot any positivity in the foot.
Sympathy sets my teeth on edge. Honestly. Please, please, believe this. As can be seen, I am feeling sorry enough for myself that I don't need anyone else's help doing it. Molly-coddling infuriates me. I do not need to be protected or looked after. I know this is a tall order. Folks are, in my experience, basically trying to be kind and helpful. The fine line that needs to be walked is the one between being helpful and making me think you don't believe I can cope. I am sorry, but it is not a line that I can negotiate for anyone else. I can advise, however. Offering me a lift home from the hospital is great. Telling me to come visit you in Malaysia or France or Lord knows- lovely. Passing me a serving of your jambalaya when you've got leftovers? Ah, Piper!! You beautiful woman. Picking me up sparkling water when you go shopping, or understanding when I have to cancel dinner last minute or telling me that you think I'm hilarious when I MC the assembly - things that are NORMAL, and that you would have done anyway for a friend. That's the best thing to do. Behave normally. When I slip in an awkward comment about tumours, I'm not looking for sympathy or help, I'm just including the other crazy part of my reality in the conversation, the way one would ex-husbands or an on-going issue with the electric company. I am not asking for comfort. I am being a smart ass. I am, actually- as much as the above paragraph evidences the contrary- coping. I am. I WILL. I will cope because that is what one does, NOT because I am strong or courageous, and I don't want to hear that I am. I'm not. I was once. Not just now. (In truth, is sometimes wonder if the cosmos decided that my thinking that I was made it decide to chip it all apart. I do not know, and it is- again- entirely possible that the cosmos doesn't actually have me at the centre of its planning.)
I do know, however: this is not who I once was. I am much diminished. Blame the meds, blame the cosmos, blame it on the rain, blame it on the boogie, no one ever is to blame... Just don't feel sorry for me. Even when I set the demons loose.
A long delay. So why write now? Because -as I am being honest- I do need to vent, and as I am writing here primarily for myself, I am becoming less cautious about upsetting others or bringing them down. Not a good sign. I admire and respect you, gentle readers- and would reallyreally like to know who has been reading this in Switzerland and Poland- but your presence in this moronologue is entirely voluntary, and has been since the beginning. You might not have been expecting the onslaught of negativity- neither was I when I started out here. (While we're being honest, I wasn't expecting a lot of things from chemo, the other most recent being that I'd also have no hair in my nose. Imagine how runny a person's nose is when there is no hair in it!! Too much information? Well, you are a volunteer here- stop reading if you want!)
And the rant is cathartic. That is why I now do this. If you are still hanging on, and still interested in knowing, then I shall take a deeeeeeep breath, and tell you what's been happening over the last month. Maybe you should take a deep breath, too. Please don't feel yelled at. It's the cosmos I really have the issue with. And a couple of back-rubbers.
Since the last post, in addition to my brain turning to mush and my equilibrium taking a big shift off-centre, I've had another round of chemo and appointment with the oncologist. I've also been trying to make some plans and keep the planets in their orbit. I mention both in that sentence together, because each has proven to be as impossible and out of the scope of my ability as the other.
The oncologist continues to be pleased by my progress. The tumour is still shrinking, and she needs to give the breast a right good going-over even to feel it any more. Encouraging. There will still be an operation, and she still will not commit to a date. The next MRI is scheduled for Monday the 14th (the day we Canucks will be celebrating Canadian Thanksgiving- woo hoo!) and the follow-up appointment with the surgeon is on Thursday the 17th. I will be told whether the operation will happen the next week or not. The oncologist is pretty confident that it will be. Her vague, this-would-be-a-plan-if-I-could-commit-to-a-plan calculations have the follow-up chemotherapy starting after the operation, and finishing up one year later. (Yes, this does mean that I might be wise to stay in Korea. The possibility of looking for another job is adding to my anxiety base.) She said that there is a 20 % possibility that I will not need follow-up chemo afterwards, but that basically I would. (Yes, I know) She then had a quick look at the calendar. My radiation treatments are, if all goes ahead according to her this-would-be-a-plan-if-I-could-commit-to-a-plan, going to commence on December 12th. Yes, sweet reader, that is the day before the start of the Christmas break. My great fear has come to pass. I will be spending another long holiday here. Bugger. In case I did not make my feelings on this clear, let me do so again:
BUGGER.
Prominent symptoms during this round include:
Ah, you already know that. Depression, rage, runny nose. YAWN.
In unrelated news, Annie will be going to Mongolia for Discovery Week. Brilliant!! Her school play is in a fortnight. Brilliant!! We both will be glad to be on the other side of that, I think. She will be back in the UK for Christmas, so if she rolls up unannounced on any of your doorsteps, then please just pass her a pillow and a quiet corner to crash in.
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