I think meta-cognition just means realising what my subconscious was trying to tell me all along. I've been busy with school holidays and then term starting again, and my car broke down again, and... well, then I realised something else. I started this blog to process my cancer journey, and what I have written so far mirrors what I was doing at this time last year. Which was not much. At this time last year, I had reached a fairly dark place - so the pause in my writing this year reflects my reluctance to write about what was happening then.
Buckle up, you have been warned. This is a cancer story, yes. It is not a nice, happy, wrapped in a pink ribbon "cancer has made me stronger and I wouldn't change a thing" story. No, this is not a story of a "survivor" who has it all together, or even a "warrior" who is fighting the good fight. This is just me, stumbling through the dark. There isn't much that is pink in this story, though there's quite a bit of red and some black.
So, to resume the story, I mustered up enough courage to turn up for my third round of chemotherapy, even knowing how I would feel afterward. I held my arm still and let them put that damn big needle in my vein and pump in the poison. I reminded myself that this was the third out of four rounds of my first chemotherapy protocol, then I would be half way though! After that I had another four rounds of a new kind of chemotherapy - but I would read about that when I got there.
The week after chemo I spent on the couch, tired and sick. Chocolate helped a bit.
(As Victor Hugo would say: let me digress. I had always thought chemotherapy patients lost weight. Nope. I gained 6kg during my course of chemo. The nurse tried to reassure me that it was a steroid side effect. I told her it was chocolate side effect. So I was fat, as well as bald, tired and sick. Do you wonder why I don't want to revisit that time?)
Anyway, third chemo done and dusted - just one more until the half way point and then I would be able to see the light at the end of the tunnel!
Except that this was the moment my cancer decided to throw me a curve ball. My blood tests had always been good - I never had neutropenia and the risk of infection that some cancer patients get. So I viewed it as pretty much routine to have blood tests and a physical examination before each chemo session. I wandered into my oncologist's office, peeked at my test results on the edge of her desk, everything as usual. She examined the lump (I never touched it myself - I had never liked the idea of not taking the cancer out immediately) then she cancelled my chemotherapy.
What? Why? I'm nearly half-way! I don't want to take a break! I've worked it all out, and if I go straight through I'll finish in time to have my surgery just before Christmas and then recover over the summer. I have my life all planned out already!
Except that the best laid plans can be completely trashed by cancer when it decides not to co-operate. My cancer was not responding to the chemotherapy. Not at all. It was actually continuing to grow on the current regimen. I tried not to be disturbed by the idea of my cancer still growing inside my body, living on my blood, stealing my nutrients, and trying to steal my life. I tried not to be creeped-out by my own body and the menace lurking inside me. It worked about as well as you might expect, which was not at all.
My oncologist was urgently changing my treatment plan - bin the current plan, it's not working and is therefore a waste of precious time. New plan, new chemotherapy agent - and a new schedule of six rounds of this one, assuming I can cope with the side effects which are generally known to be worse than the other one, and are possibly permanent.
For the first time I started to wonder about the survival statistics I had been reading and whether I would end up on the "good" side. For me at Stage 3 (large primary, known lymph node involvement) the numbers say that 72% of us will still be alive in five years. That sounded kind of OK to me at first, it's nearly three-quarters, right? Except that's only for Stage 3A. If I turned out at surgery to be Stage 3C the 5 year survival drops to 49% - a coin toss.
I'll put you out of your suspense. I would not know this for another five months, but I was going to get that Stage 3C classification before it was all finished. I was found at surgery to have more extensive lymph node involvement than was evident on the ultrasound.
So that's the news to about October 2013, and now you know why I haven't wanted to write it out. Somehow seeing the numbers in black and white makes it look more inevitable. That probably shows I am better at optimism than mathematics...
Thursday 16 October 2014
Tuesday 9 September 2014
Today is World Suicide Prevention Day.
I've just heard that today is World Suicide Prevention Day, so I'm going to belay the moving house shenanigans post for another day and go straight to my second chemo, which is related to today's theme.
The first week after my first chemo was spent lying on a couch and trying to get up enough energy to stand upright. This was a prerequisite to being able to eat anything, as I was not going to risk being sick while lying down. Also, I giving myself daily injections, and I suppose it is part of how bad I was feeling that giving myself injections was the high point of most days.
The second week after chemo I started to have more energy, to be able to eat better and to notice my hair falling out. I had it chopped short, hoping that this would contain the mess and make it easier to transition to no hair at all. At first it was just a few strands, then clumps, then I started to look like some kind of piebald pony with a horrible disease and I decided to get the rest shaved off.
I then discovered there is a big difference between short hair and totally bald. Instantly, I was marked as 'the one with cancer'. Everywhere I went, people would stare, though I suppose I should be glad only one person actually asked me, "What on earth have you done to yourself?!"
The third week was pretty much spent dreading going in for the next cycle of chemo. The first one had been traumatic because I hadn't known what to expect. Now that I knew what I was getting into - it was much worse. Knowingly going to hospital to spend hours lying helplessly on a couch letting them give me poisons which would make me even sicker... ugh! I found it increasingly difficult to imagine successfully completing the planned eight cycles. Days of vomiting, weeks of being unwell repeating for 24 weeks - it stretched out ahead of me, and I became increasingly obsessed with online research about survival statistics.
Yep, I did what I always tell my patients not to do, and started to listen to Dr Google. I wasn't surfing the internet so much as drowning in it. Every story I read, I wondered if this would be me? Every article I skimmed from the medical journals I wondered, will this happen to me? Every possible side effect, every tear-jerking personal memoir, would this be my story? Or this? Or this?
Too much information, too little fact, all spinning through my head at once, until one day I was crossing the bridge above the rail line near the station and I suddenly realised that I could take control of it all. I could make sure the worst never happened and (bonus) I would never have to face chemo again if I just drove my car off that bridge.
The thought seemed wrong somehow, but I couldn't put my finger on what was wrong with it. I pushed it out of my mind, but it kept coming back. I also entertained thoughts of running away to Queensland, or just pretending it away and 'forgetting' about all my appointments. But I knew that would not really work, it would not really end all the stress and sickness.
Besides, a lot of cancer cases end in death. There is no getting around the fact that quite a few people with cancer die of it - cancer has a bad reputation for a reason. I could go through all this agony, sickness and suffering and then die anyway. Surely it would be easier and cleaner to just get it all over with immediately?
Fortunately I have a very perceptive oncologist who did not believe me when I said that I was 'fine'. She told me I needed to see a psychologist. Then she rang me to see if I'd seen a psychologist. Then she asked the psychologist to ring me with an appointment and not to take no for an answer.
The psychologist was a lovely sympathetic lady with whom I did not connect at all. She had lots of excellent logical reasons why suicide was a bad idea, and which completely failed to convince me. (This is no reflection on her skills, we just didn't 'click'.)
I went back to my wonderful GP, who had no reasons at all and no logic but who just let me pour it all out and said "Yeah, this sucks." So at least I knew she was listening to me. She convinced me to take it one day at a time, one hour at a time if necessary, and to put down the internet and step away!
For me, the key was to focus on my life as it is in the here and now. 'Mindfulness' is the psychological term for it, but I could equally call it 'appreciating my blessings' and 'being grateful I'm alive today, regardless of tomorrow'. Whatever the name, it was something I had to learn and practice for myself - there was no magic bullet, or brilliant insight that anyone else could give me.
Cancer patients are expected to feel sick, to feel tired and (to a certain extent) to complain about those things. Talking about feeling suicidal was different, and much more difficult. So don't be surprised if this is the first you have heard of it. Somehow 'coming out' on that subject was harder than telling people about the cancer itself.
But I am eternally glad for the various people who came alongside me and listened, and let me lean on them - some will be reading this blog, most did not know at the time how important their small gestures and kindnesses were. Thank you all.
I am now more than a year down the track from that point, but I won't quickly forget how it felt. Staring down into the dark well and wondering if that place is better than here.
Public Service Announcement: Suicide is always something to take seriously. Even people who appear funny, strong and otherwise to have it all together can be overwhelmed - the tragic death of Robin Williams has taught us that. If someone tells you they are thinking of killing themselves, seek help for them and support for yourself. Lifeline does both of these things: 13 11 14.
The first week after my first chemo was spent lying on a couch and trying to get up enough energy to stand upright. This was a prerequisite to being able to eat anything, as I was not going to risk being sick while lying down. Also, I giving myself daily injections, and I suppose it is part of how bad I was feeling that giving myself injections was the high point of most days.
The second week after chemo I started to have more energy, to be able to eat better and to notice my hair falling out. I had it chopped short, hoping that this would contain the mess and make it easier to transition to no hair at all. At first it was just a few strands, then clumps, then I started to look like some kind of piebald pony with a horrible disease and I decided to get the rest shaved off.
I then discovered there is a big difference between short hair and totally bald. Instantly, I was marked as 'the one with cancer'. Everywhere I went, people would stare, though I suppose I should be glad only one person actually asked me, "What on earth have you done to yourself?!"
The third week was pretty much spent dreading going in for the next cycle of chemo. The first one had been traumatic because I hadn't known what to expect. Now that I knew what I was getting into - it was much worse. Knowingly going to hospital to spend hours lying helplessly on a couch letting them give me poisons which would make me even sicker... ugh! I found it increasingly difficult to imagine successfully completing the planned eight cycles. Days of vomiting, weeks of being unwell repeating for 24 weeks - it stretched out ahead of me, and I became increasingly obsessed with online research about survival statistics.
Yep, I did what I always tell my patients not to do, and started to listen to Dr Google. I wasn't surfing the internet so much as drowning in it. Every story I read, I wondered if this would be me? Every article I skimmed from the medical journals I wondered, will this happen to me? Every possible side effect, every tear-jerking personal memoir, would this be my story? Or this? Or this?
Too much information, too little fact, all spinning through my head at once, until one day I was crossing the bridge above the rail line near the station and I suddenly realised that I could take control of it all. I could make sure the worst never happened and (bonus) I would never have to face chemo again if I just drove my car off that bridge.
The thought seemed wrong somehow, but I couldn't put my finger on what was wrong with it. I pushed it out of my mind, but it kept coming back. I also entertained thoughts of running away to Queensland, or just pretending it away and 'forgetting' about all my appointments. But I knew that would not really work, it would not really end all the stress and sickness.
Besides, a lot of cancer cases end in death. There is no getting around the fact that quite a few people with cancer die of it - cancer has a bad reputation for a reason. I could go through all this agony, sickness and suffering and then die anyway. Surely it would be easier and cleaner to just get it all over with immediately?
Fortunately I have a very perceptive oncologist who did not believe me when I said that I was 'fine'. She told me I needed to see a psychologist. Then she rang me to see if I'd seen a psychologist. Then she asked the psychologist to ring me with an appointment and not to take no for an answer.
The psychologist was a lovely sympathetic lady with whom I did not connect at all. She had lots of excellent logical reasons why suicide was a bad idea, and which completely failed to convince me. (This is no reflection on her skills, we just didn't 'click'.)
I went back to my wonderful GP, who had no reasons at all and no logic but who just let me pour it all out and said "Yeah, this sucks." So at least I knew she was listening to me. She convinced me to take it one day at a time, one hour at a time if necessary, and to put down the internet and step away!
For me, the key was to focus on my life as it is in the here and now. 'Mindfulness' is the psychological term for it, but I could equally call it 'appreciating my blessings' and 'being grateful I'm alive today, regardless of tomorrow'. Whatever the name, it was something I had to learn and practice for myself - there was no magic bullet, or brilliant insight that anyone else could give me.
Cancer patients are expected to feel sick, to feel tired and (to a certain extent) to complain about those things. Talking about feeling suicidal was different, and much more difficult. So don't be surprised if this is the first you have heard of it. Somehow 'coming out' on that subject was harder than telling people about the cancer itself.
But I am eternally glad for the various people who came alongside me and listened, and let me lean on them - some will be reading this blog, most did not know at the time how important their small gestures and kindnesses were. Thank you all.
* * *
I am now more than a year down the track from that point, but I won't quickly forget how it felt. Staring down into the dark well and wondering if that place is better than here.
Public Service Announcement: Suicide is always something to take seriously. Even people who appear funny, strong and otherwise to have it all together can be overwhelmed - the tragic death of Robin Williams has taught us that. If someone tells you they are thinking of killing themselves, seek help for them and support for yourself. Lifeline does both of these things: 13 11 14.
If it's Tuesday, this must be CT
So I told the various members of the family about the news from Tuesday, either in person or by email. I debated not telling my parents at all until they arrived back from Europe, but decided that it would be worse to come home to find me already bald and in the middle of chemotherapy, so email it was.
I am still not quite clear about how non-medical people receive statistics on this kind of thing. For my grade and size of cancer, the stats say five-year-survival is 70%. Does that sound like a good number, or not?
My MIL (mother in law) thought that meant that three-quarters are still alive in five years - that's good! I couldn't help thinking that meant that three in ten are dead at five years. I'm not sure if the difference is one of perspective, attitude or simply mathematical understanding.
So, I spent the next week being chewed up and spat out by the tornado of testing. I was CT scanned, bone scanned, x-rayed, renal tested and cardiac tested. If I had one of anything, it was tested and imaged to see how well it worked. Then the chemotherapy was designed to test it almost to the limits. I hope whoever did the calculations was careful with their decimal points!
However, one side effect of the testing was that I was radioactive for two days. I had to wean Benji, who was then 15 months old and breastfeeding eight times every day. But on balance, I decided that it was better for her to have 15 months of nutritious milk than another few months of milk contaminated with only-the-pharmacist-knows-what. It felt like the end of an era though, and also the end of my brief career as a breastfeeding counsellor. (I felt that my unspoken thoughts of "you think you've got problems!" was not a helpful attitude to take into the therapeutic space.)
My SIL (sister-in-law) took me to get my hair chopped off, and I told myself I was ready.
I don't think it is possible to be really ready for something like this. On Wednesday morning I took the aprepitant and dexamethasone (to prevent nausea) and within 30 mins of the infusion starting I had my head in a bucket. So they gave me metoclopramide as well. And prochlorperazine. And ondansetron. I just about rattled when I moved and still nothing - staying down, that is!
I was moved from the day chemo centre to the overnight ward and given an infusion of IV fluid to make up for what I was losing. There someone had the bright idea that I was sick because of high levels of anxiety, so I was given a dose of lorazepam. Then I was sedated and still sick. (No, you don't want to imagine that - it was not a happy combination.) Suffice it to say that I am never again eating cold beef and mustard sandwiches.
By the next morning (Thursday) I was well enough to go home and lie on my own couch.
Except for the fact that we were moving house on the Saturday.
With truly appalling timing, our landlord had decided to do some key renovations and had given us legal notice to get out. We debated appealing or fighting the order, but my chemotherapy plan was to have six months of chemotherapy. During that time I would expect to get progressively more tired and sick. So we decided to bite the bullet and move on the first weekend after my first chemotherapy.
Who thought that was a good idea, again?
The move, in retrospect, was hilarious and deserves its own post, so that's some fun for another day!
I am still not quite clear about how non-medical people receive statistics on this kind of thing. For my grade and size of cancer, the stats say five-year-survival is 70%. Does that sound like a good number, or not?
My MIL (mother in law) thought that meant that three-quarters are still alive in five years - that's good! I couldn't help thinking that meant that three in ten are dead at five years. I'm not sure if the difference is one of perspective, attitude or simply mathematical understanding.
So, I spent the next week being chewed up and spat out by the tornado of testing. I was CT scanned, bone scanned, x-rayed, renal tested and cardiac tested. If I had one of anything, it was tested and imaged to see how well it worked. Then the chemotherapy was designed to test it almost to the limits. I hope whoever did the calculations was careful with their decimal points!
However, one side effect of the testing was that I was radioactive for two days. I had to wean Benji, who was then 15 months old and breastfeeding eight times every day. But on balance, I decided that it was better for her to have 15 months of nutritious milk than another few months of milk contaminated with only-the-pharmacist-knows-what. It felt like the end of an era though, and also the end of my brief career as a breastfeeding counsellor. (I felt that my unspoken thoughts of "you think you've got problems!" was not a helpful attitude to take into the therapeutic space.)
My SIL (sister-in-law) took me to get my hair chopped off, and I told myself I was ready.
I don't think it is possible to be really ready for something like this. On Wednesday morning I took the aprepitant and dexamethasone (to prevent nausea) and within 30 mins of the infusion starting I had my head in a bucket. So they gave me metoclopramide as well. And prochlorperazine. And ondansetron. I just about rattled when I moved and still nothing - staying down, that is!
I was moved from the day chemo centre to the overnight ward and given an infusion of IV fluid to make up for what I was losing. There someone had the bright idea that I was sick because of high levels of anxiety, so I was given a dose of lorazepam. Then I was sedated and still sick. (No, you don't want to imagine that - it was not a happy combination.) Suffice it to say that I am never again eating cold beef and mustard sandwiches.
By the next morning (Thursday) I was well enough to go home and lie on my own couch.
Except for the fact that we were moving house on the Saturday.
With truly appalling timing, our landlord had decided to do some key renovations and had given us legal notice to get out. We debated appealing or fighting the order, but my chemotherapy plan was to have six months of chemotherapy. During that time I would expect to get progressively more tired and sick. So we decided to bite the bullet and move on the first weekend after my first chemotherapy.
Who thought that was a good idea, again?
The move, in retrospect, was hilarious and deserves its own post, so that's some fun for another day!
Monday 1 September 2014
Thursday: Conclusion
After leaving them to clean up the carnage in the ultrasound suite, Dean and I went back upstairs to the surgeon's room. He said he would get the result from the samples in pathology, and come straight to his office to tell us.
Just after 5pm on that same Thursday, the day which had started a year ago with a normal ward round, the surgeon sat in front of us with a serious face. A "bad news" face.
As he spoke to us, I had a dissociative moment. My brain heard him say the expected words: it's a blocked duct.
And yet at the same time his mouth seemed to be saying a word that started with C and ended with -ancer. Impossible.
I shook my head and asked him to repeat what he had just said. With no change of expression, as if my request were completely reasonable and expected he repeated his sentence and this time both brain and eyes agreed: it's cancer.
He continued to talk to us for a further half hour. I presume he was outlining the need for staging scans, possible treatment plans, likely scenarios for prognosis. I did not hear any of it. My mind was too busy buzzing with various disconnected thoughts:
He must have picked up someone else's file.
I'm too young to have cancer!
I don't feel sick. This can't be true.
This is impossible. I'm a doctor, not a patient.
This can't be happening, I just want to go home and forget this ever happened.
We have to move house in three weeks!
Will I have to wean Benji? She's still feeding eight times each day!
Was it something I ate? Was it something I did?
Is this my fault somehow?
Will this also attack my daughters, sister, cousins, niece?
How long will I be off work? How much sick leave do I have?
How can I tell my parents, currently in Europe?
How can I tell anyone?
I've never smoked. I'm a good person! I don't deserve this!
I need to go home and pretend that my life has not just changed completely.
I presume Dean shook the surgeon's hand, thanked him, said all the right things. I didn't say anything.
I don't remember what I did that night.
I don't remember what I did the next day.
I don't remember what I did for the whole weekend.
I'm pretty sure I took the girls to the park and tried not to think about it.
I'm sure I thought about it anyway.
The only clear picture in my mind is pushing Zoe on the swings, as she shrieked and laughed, and wondering how long it would be before I could do this again, if ever.
Just after 5pm on that same Thursday, the day which had started a year ago with a normal ward round, the surgeon sat in front of us with a serious face. A "bad news" face.
As he spoke to us, I had a dissociative moment. My brain heard him say the expected words: it's a blocked duct.
And yet at the same time his mouth seemed to be saying a word that started with C and ended with -ancer. Impossible.
I shook my head and asked him to repeat what he had just said. With no change of expression, as if my request were completely reasonable and expected he repeated his sentence and this time both brain and eyes agreed: it's cancer.
He continued to talk to us for a further half hour. I presume he was outlining the need for staging scans, possible treatment plans, likely scenarios for prognosis. I did not hear any of it. My mind was too busy buzzing with various disconnected thoughts:
He must have picked up someone else's file.
I'm too young to have cancer!
I don't feel sick. This can't be true.
This is impossible. I'm a doctor, not a patient.
This can't be happening, I just want to go home and forget this ever happened.
We have to move house in three weeks!
Will I have to wean Benji? She's still feeding eight times each day!
Was it something I ate? Was it something I did?
Is this my fault somehow?
Will this also attack my daughters, sister, cousins, niece?
How long will I be off work? How much sick leave do I have?
How can I tell my parents, currently in Europe?
How can I tell anyone?
I've never smoked. I'm a good person! I don't deserve this!
I need to go home and pretend that my life has not just changed completely.
I presume Dean shook the surgeon's hand, thanked him, said all the right things. I didn't say anything.
I don't remember what I did that night.
I don't remember what I did the next day.
I don't remember what I did for the whole weekend.
I'm pretty sure I took the girls to the park and tried not to think about it.
I'm sure I thought about it anyway.
The only clear picture in my mind is pushing Zoe on the swings, as she shrieked and laughed, and wondering how long it would be before I could do this again, if ever.
Thursday 28 August 2014
Thursday, Part 2 of 3.
(Warning for detailed descriptions of medical procedures.)
So Dean and I trudged down to the U/S department, where I was stripped, draped, anaesthetized (local) and where it suddenly struck me how different it is to be a patient in a hospital, as opposed to a doctor. I suppose a certain amount of objectivity about what was happening to me is part of my defence mechanisms, but when I saw the long core biopsy needle they were about to stick into me, I suddenly realized; I am the patient now.
It is one thing to be the doctor, standing beside the bed and explaining why this test is actually for the patient's benefit and that it will be done in 'as comfortable a manner as possible'. It is something completely different to be lying on the table, about to be on the receiving end. I've done core biopsies on people. They damn well hurt.
Dean gave me two fingers to hold - a technique he learned for labour, but I recommend it to anyone who is going to offer to hold the hand of someone who is going through pain. It prevents your hand being crushed. No need for both of you to suffer.
It took them ages to get ready, going back and forth between the U/S screen and the lightbox with the printed images from my scans earlier in the day. Finally, someone positioned the needle over the square of exposed skin, just beneath where the U/S probe was resting. I looked away. Not my job to be in control any more. All I had to do was lie still and endure until it was finished.
Clunk.
It was both a sound and a feeling. The deep thud of the spring mechanism merged with the jolt all through my body, and yes, it hurt. But it wasn't over. The needle had snagged on the lump deep inside my breast, and they were having to wriggle and twist to get it back out. I felt like a fish on a hook. The automatic spring was trying to retract with the sample, but it was also caught on my tissue. The tension felt like it was trying to pull the lump out through my skin without the benefit of surgery.
I controlled my breathing. Concentrated on just breathing. I knew that if I started crying or breathing irregularly, that would make their job more difficult. Lie still. Let them do their work.
Other people are in control and it hurts! Scream! Run! Make them stop! Do whatever it takes to get away!
No. Breathe. Just breathe.
Eventually, they were able to withdraw the needle from my skin. The precious sample went into the bottle of preserving fluid, and I finally allowed myself to take a deep, shaky breath.
"You are doing so well, just three more," soothed the radiologist.
Three more? I can't! I can't!
I couldn't speak. I kept my mouth closed and my face turned away. They continued anyway.
Clunk. Clunk. Clunk. Clunk. Clunk. Clunk.
Oh God, that's more than three! What are they doing to me? I just want to go home.
Clunk. Clunk. Clunk. Clunk. Clunk.
After what I later found out was 12 biopsies, they finally had all the bits of me they needed. My jaw was sore from clenching my teeth and my throat was sore from all the screams I was swallowing.
Don't cry. Don't let go. If you start crying you might never be able to stop.
I finally managed to croak, "So, did you get milk out?"
No-one answered my question.
The ultrasonographer murmured something to the radiologist, at the same time as I noticed something warm and wet running down out of the anaesthetized area. Sloppy gel probably. At least they warmed it up this time.
The nurse abandoned the sticky dressings she had been applying to my skin, and started applying direct pressure lower down, beyond the drapes obscuring my view of what they were doing. Dean stood up to look over at what they were doing.
"Size 8 sterile gloves. Now!"
I hadn't heard his surgeon voice before. It worked. In literally a few seconds he had on sterile gloves and was leaning across me. The amount of pressure four people were applying was becoming distinctly uncomfortable.
Not milk then.
So Dean and I trudged down to the U/S department, where I was stripped, draped, anaesthetized (local) and where it suddenly struck me how different it is to be a patient in a hospital, as opposed to a doctor. I suppose a certain amount of objectivity about what was happening to me is part of my defence mechanisms, but when I saw the long core biopsy needle they were about to stick into me, I suddenly realized; I am the patient now.
It is one thing to be the doctor, standing beside the bed and explaining why this test is actually for the patient's benefit and that it will be done in 'as comfortable a manner as possible'. It is something completely different to be lying on the table, about to be on the receiving end. I've done core biopsies on people. They damn well hurt.
Dean gave me two fingers to hold - a technique he learned for labour, but I recommend it to anyone who is going to offer to hold the hand of someone who is going through pain. It prevents your hand being crushed. No need for both of you to suffer.
It took them ages to get ready, going back and forth between the U/S screen and the lightbox with the printed images from my scans earlier in the day. Finally, someone positioned the needle over the square of exposed skin, just beneath where the U/S probe was resting. I looked away. Not my job to be in control any more. All I had to do was lie still and endure until it was finished.
Clunk.
It was both a sound and a feeling. The deep thud of the spring mechanism merged with the jolt all through my body, and yes, it hurt. But it wasn't over. The needle had snagged on the lump deep inside my breast, and they were having to wriggle and twist to get it back out. I felt like a fish on a hook. The automatic spring was trying to retract with the sample, but it was also caught on my tissue. The tension felt like it was trying to pull the lump out through my skin without the benefit of surgery.
I controlled my breathing. Concentrated on just breathing. I knew that if I started crying or breathing irregularly, that would make their job more difficult. Lie still. Let them do their work.
Other people are in control and it hurts! Scream! Run! Make them stop! Do whatever it takes to get away!
No. Breathe. Just breathe.
Eventually, they were able to withdraw the needle from my skin. The precious sample went into the bottle of preserving fluid, and I finally allowed myself to take a deep, shaky breath.
"You are doing so well, just three more," soothed the radiologist.
Three more? I can't! I can't!
I couldn't speak. I kept my mouth closed and my face turned away. They continued anyway.
Clunk. Clunk. Clunk. Clunk. Clunk. Clunk.
Oh God, that's more than three! What are they doing to me? I just want to go home.
Clunk. Clunk. Clunk. Clunk. Clunk.
After what I later found out was 12 biopsies, they finally had all the bits of me they needed. My jaw was sore from clenching my teeth and my throat was sore from all the screams I was swallowing.
Don't cry. Don't let go. If you start crying you might never be able to stop.
I finally managed to croak, "So, did you get milk out?"
No-one answered my question.
The ultrasonographer murmured something to the radiologist, at the same time as I noticed something warm and wet running down out of the anaesthetized area. Sloppy gel probably. At least they warmed it up this time.
The nurse abandoned the sticky dressings she had been applying to my skin, and started applying direct pressure lower down, beyond the drapes obscuring my view of what they were doing. Dean stood up to look over at what they were doing.
"Size 8 sterile gloves. Now!"
I hadn't heard his surgeon voice before. It worked. In literally a few seconds he had on sterile gloves and was leaning across me. The amount of pressure four people were applying was becoming distinctly uncomfortable.
Not milk then.
Tuesday 26 August 2014
In the beginning...
It was a Thursday. I had picked up an extra shift at the hospital because there was a gap that needed to be filled. I had an appointment with my GP in the afternoon about a blocked duct but I went in and did a ward round in the morning and sorted out all the patients and students before darting off to see my own doctor.
I wouldn't have bothered on my own account, but husbands can be such worriers! It seemed to be my fate to have at least one bout of either blocked ducts or mastitis with each baby, and Benji had suddenly stopped feeding on the right side. Besides, I like my GP. She is funny, sensible, good at what she does and we often have a laugh together about the anxieties of husbands.
I had last seen her during my pregnancy with Benji (also for husband-related anxiety) so we had quite a bit of catching up to do. I explained I was there for her to see this breast lump which was probably a blocked duct, and that I was doing my wifely duty, so could I please have a message from her to take to my husband telling him not to worry?
One of the things I like about my GP is that she is thorough. Even though we both knew this would not be anything, she went very seriously through all the steps of examining me, looking carefully at everything (even the lymph glands under my arms and in my neck) and generally doing a very good job. I always take notes about her style when I see her - she has been in practice a good twenty years longer than I have, and I hope one day to have her bedside manner.
However, I have to admit that I was not impressed when she said that my lump was "not obviously a blocked duct" and that I would have to have a mammogram and ultrasound. One of the annoying things about seeing a good doctor is that I would have to be an idiot not to take her advice. So I checked my watch, decided that I could fit in her requested investigations as long as the registrar did not call, and went over to the radiology suite.
She had called ahead and so when I arrived I went straight in to the MMG. It was rather uncomfortable, but not as bad as I had feared. The worst part was the reading material in the waiting room - 50 Shades of Grey. I decided I would rather stare at the walls.
Then the U/S, which unfortunately took a very long time. In the middle of it, my phone rang. It was the registrar at the hospital for which I was currently on-call. The ultrasonographer waved to indicate that I should take the call, so I did. It was a routine update on the patients of the afternoon and the results from the morning's blood tests. I talked to the reg for a while, and while I was annoyed to notice that the ultrasonographer had turned the screen away so that I could not see what he was doing, as I was on the phone I could not correct him.
The phone call and the ultrasound ended at about the same time, so I was given the films and released to take them back to my GP. Straight away please, and they would fax over the report within the next ten minutes, as soon as the radiologist was finished. Amazing service! I trotted back to my GP, hoping that we would be able to wrap this all up before the end of the day.
But no. She was doing the professional frown and "concerned" look that I have felt on my own face when I have to give someone news they are not going to like. Sure enough, the U/S was "inconclusive" and the report said "recommend biopsy".
"I can't. I'm on call."
My usually very understanding GP seemed to be rather dense today.
"It is one thing to have an U/S while I'm on call, but I can't have a sedative, local anaesthetic and be lying under a sterile sheet having a biopsy while I am supposed to be on call!"
Totally unsympathetically, she suggested I call in sick.
"But I've never chucked a sickie in my life before! I don't even know how to call in sick at this hospital!"
"There will be a way."
"And I'm meant to be on call this weekend as well!"
Finally, I managed to turn my mind to tackling the issue, found the relevant phone numbers, and called in sick. Then my increasingly dictatorial GP said that I should call my husband to come and hold my hand for the biopsy.
I scoffed at that. Did she think I was some kind of inexperienced person who has never been in a hospital before, that I needed my hand held? She was insistent. She even rang through to the theatre where Dean was operating. I was rather scandalised by her nerve. She did not bother to ask what he was doing - just told him to drop everything and come straight to the hospital to meet me. (I had never dared try that, not even the day I thought Zoe had a broken arm!)
So with a deep sigh I wandered off down to the surgeon's rooms for a fine needle biopsy. I still thought this was all rather overkill for what was most likely going to turn out to be a blocked duct. Lactating women are notoriously difficult to image, and I was well aware of the number of "false positives" which MMGs turn up in women under 40. Still, my GP was very compelling.
So the surgeon gave me an injection of local anaesthetic and stuck a small needle in me.
I asked him, "Did you get any milk out?"
"No." He gave me a rather strange look that seemed to say, "Are you sure you're a doctor?"
The needle did not hurt. I could not feel anything except for a small amount of wetness leaking down my side.
"Sorry about this, but I might be leaking milk on your examination couch."
He turned around quickly from preparing the slides and hurried back to apply direct pressure to the site. Lactating women bleed quite a lot when you stick a needle in the breast, apparently.
Dean arrived just in time for the conversation about "FNA inconclusive, suggest U/S guided core biopsy." After a quick conversation, we agreed that the girls were already with his mother and it might be best to get it out of the way immediately, so we headed downstairs for the core biopsy. Fortunately they were able to squeeze me in just before 5pm. I did not need it (of course) but I was glad all the same that Dean was there to hold my hand.
I wouldn't have bothered on my own account, but husbands can be such worriers! It seemed to be my fate to have at least one bout of either blocked ducts or mastitis with each baby, and Benji had suddenly stopped feeding on the right side. Besides, I like my GP. She is funny, sensible, good at what she does and we often have a laugh together about the anxieties of husbands.
I had last seen her during my pregnancy with Benji (also for husband-related anxiety) so we had quite a bit of catching up to do. I explained I was there for her to see this breast lump which was probably a blocked duct, and that I was doing my wifely duty, so could I please have a message from her to take to my husband telling him not to worry?
One of the things I like about my GP is that she is thorough. Even though we both knew this would not be anything, she went very seriously through all the steps of examining me, looking carefully at everything (even the lymph glands under my arms and in my neck) and generally doing a very good job. I always take notes about her style when I see her - she has been in practice a good twenty years longer than I have, and I hope one day to have her bedside manner.
However, I have to admit that I was not impressed when she said that my lump was "not obviously a blocked duct" and that I would have to have a mammogram and ultrasound. One of the annoying things about seeing a good doctor is that I would have to be an idiot not to take her advice. So I checked my watch, decided that I could fit in her requested investigations as long as the registrar did not call, and went over to the radiology suite.
She had called ahead and so when I arrived I went straight in to the MMG. It was rather uncomfortable, but not as bad as I had feared. The worst part was the reading material in the waiting room - 50 Shades of Grey. I decided I would rather stare at the walls.
Then the U/S, which unfortunately took a very long time. In the middle of it, my phone rang. It was the registrar at the hospital for which I was currently on-call. The ultrasonographer waved to indicate that I should take the call, so I did. It was a routine update on the patients of the afternoon and the results from the morning's blood tests. I talked to the reg for a while, and while I was annoyed to notice that the ultrasonographer had turned the screen away so that I could not see what he was doing, as I was on the phone I could not correct him.
The phone call and the ultrasound ended at about the same time, so I was given the films and released to take them back to my GP. Straight away please, and they would fax over the report within the next ten minutes, as soon as the radiologist was finished. Amazing service! I trotted back to my GP, hoping that we would be able to wrap this all up before the end of the day.
But no. She was doing the professional frown and "concerned" look that I have felt on my own face when I have to give someone news they are not going to like. Sure enough, the U/S was "inconclusive" and the report said "recommend biopsy".
"I can't. I'm on call."
My usually very understanding GP seemed to be rather dense today.
"It is one thing to have an U/S while I'm on call, but I can't have a sedative, local anaesthetic and be lying under a sterile sheet having a biopsy while I am supposed to be on call!"
Totally unsympathetically, she suggested I call in sick.
"But I've never chucked a sickie in my life before! I don't even know how to call in sick at this hospital!"
"There will be a way."
"And I'm meant to be on call this weekend as well!"
Finally, I managed to turn my mind to tackling the issue, found the relevant phone numbers, and called in sick. Then my increasingly dictatorial GP said that I should call my husband to come and hold my hand for the biopsy.
I scoffed at that. Did she think I was some kind of inexperienced person who has never been in a hospital before, that I needed my hand held? She was insistent. She even rang through to the theatre where Dean was operating. I was rather scandalised by her nerve. She did not bother to ask what he was doing - just told him to drop everything and come straight to the hospital to meet me. (I had never dared try that, not even the day I thought Zoe had a broken arm!)
So with a deep sigh I wandered off down to the surgeon's rooms for a fine needle biopsy. I still thought this was all rather overkill for what was most likely going to turn out to be a blocked duct. Lactating women are notoriously difficult to image, and I was well aware of the number of "false positives" which MMGs turn up in women under 40. Still, my GP was very compelling.
So the surgeon gave me an injection of local anaesthetic and stuck a small needle in me.
I asked him, "Did you get any milk out?"
"No." He gave me a rather strange look that seemed to say, "Are you sure you're a doctor?"
The needle did not hurt. I could not feel anything except for a small amount of wetness leaking down my side.
"Sorry about this, but I might be leaking milk on your examination couch."
He turned around quickly from preparing the slides and hurried back to apply direct pressure to the site. Lactating women bleed quite a lot when you stick a needle in the breast, apparently.
Dean arrived just in time for the conversation about "FNA inconclusive, suggest U/S guided core biopsy." After a quick conversation, we agreed that the girls were already with his mother and it might be best to get it out of the way immediately, so we headed downstairs for the core biopsy. Fortunately they were able to squeeze me in just before 5pm. I did not need it (of course) but I was glad all the same that Dean was there to hold my hand.
* * *
It was a long day, so I'm going to split it into two posts. Also, I've just been told that some people prefer to follow blogs on FB, so I've created a FB page for this blog and all updates will also be posted there. https://www.facebook.com/honeysandwichesandbreastcancer
Monday 25 August 2014
Welcome to my new blog!
You might be wondering why someone who already has four blogs, a Facebook account, two fan fiction pseudonyms and a reddit account needs another place to air her thoughts. Or you might be unaware that I already have all those. Anyway, I decided I need a different space to talk about my cancer journey and how it intersects with my parenting and with the rest of my life.
So here we are! Honey Sandwiches!
The title was chosen because I realized how important honey sandwiches are in my life, or more accurately, in Evie's life. It was because one day when everything was just too hard, and I was just too tired and there was just too much going on, I decided that Evie could have honey sandwiches in her lunchbox. I do not generally consider honey sandwiches to be the last word in nutrition for a child's school lunchbox. I do not encourage anyone else to give their child honey sandwiches for lunch, and certainly not on a regular basis.
But on this particular morning I was overwhelmed and stressed and I decided to chuck it all in the too-hard basket, embrace my inner "bad mother" and let Evie have honey sandwiches for lunch for once.
But the world did not end. No-one came to take my child away, or even visited to ask me probing questions. Evie ate her lunch and loved it! And I decided that on the whole, there is a place for cutting myself some slack and giving my kids honey sandwiches every now and then.
So, honey sandwiches are a symbol to me of letting myself prioritize my sanity over my perfectionism, of recognizing that I'm often too tired to do everything well and have to make some tough choices, of letting go and giving myself some grace.
Having cancer has taught me many life lessons which I am keen to record and reflect upon. You are invited to join me on this journey.
PS - If this is the first you have heard about my cancer diagnosis at all, don't feel you are the only one. I have deliberately kept it very quiet to date. I am only now beginning to be able to talk about it. The next few posts of this blog will detail how it all happened, and why I have not spoken about it much.
So here we are! Honey Sandwiches!
The title was chosen because I realized how important honey sandwiches are in my life, or more accurately, in Evie's life. It was because one day when everything was just too hard, and I was just too tired and there was just too much going on, I decided that Evie could have honey sandwiches in her lunchbox. I do not generally consider honey sandwiches to be the last word in nutrition for a child's school lunchbox. I do not encourage anyone else to give their child honey sandwiches for lunch, and certainly not on a regular basis.
But on this particular morning I was overwhelmed and stressed and I decided to chuck it all in the too-hard basket, embrace my inner "bad mother" and let Evie have honey sandwiches for lunch for once.
But the world did not end. No-one came to take my child away, or even visited to ask me probing questions. Evie ate her lunch and loved it! And I decided that on the whole, there is a place for cutting myself some slack and giving my kids honey sandwiches every now and then.
So, honey sandwiches are a symbol to me of letting myself prioritize my sanity over my perfectionism, of recognizing that I'm often too tired to do everything well and have to make some tough choices, of letting go and giving myself some grace.
Having cancer has taught me many life lessons which I am keen to record and reflect upon. You are invited to join me on this journey.
PS - If this is the first you have heard about my cancer diagnosis at all, don't feel you are the only one. I have deliberately kept it very quiet to date. I am only now beginning to be able to talk about it. The next few posts of this blog will detail how it all happened, and why I have not spoken about it much.
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