9pm, 29/4/13
It's so good to be home!
I'm reclining in my lovely warm bed, enjoying silence of the house and the distant sound of traffic. I feel worn-out after a long day in the hospital.
I slept okay last night, from 1230-320 (woke up from another bad dream), and again from 430-730, when the cleaners woke me (don't ask me why they need to change the bins so early in the day). I'd ordered porridge for breakfast, but the grey gloop that arrived only had the hint of ever being acquainted with oatmeal, so I mixed the honey in the warm milk and drank that instead, grateful that I'd brought some bananas from home.
I had my last infusion of vancomycin from 730-1030, so I sat up on the bed and read the news and many other things on my iPad, a wonderful companion for a hospital stay. The oncology team came around 9am, and my oncologist told me the preliminary reports from pathology showed no cultures had been grown from my port. He said that means my infusaport can stay in, and I'll be able to have my next chemo on May 8th, as scheduled. I have to take augmenting duo (an antibiotic) twice a day for the next five days, then switch to flucloxcyllin. No more Clindamycin! He wants to give my liver a rest. I was to be allowed to leave after the formal results came back from pathology, which they estimated would be at 1pm.
In an example of how hospital discharges can be improved, I didn't escape until after 4, when the formal report finally arrived, despite repeated calls to pathology. I didn't mind, I managed to read most of an excellent Doctor Who book, Shada started by Douglas Adams and finished by Gareth Roberts (published 2011). It was a luxury to be able to start and finish a novel in a day, undisturbed by others. And I'm sure my bed was quickly taken by someone waiting in emergency.
So I'm home, feeling well but tired, and looking forward to spending the last week of the holidays with my beautiful boys, who were happily having nerf gun battles while I was away. I hope this is the last drama I have to go through. When the lump was detected on ultrasound, I kept telling myself it was probably a storm in a teacup, that 4/5 breast lumps are benign. I'm glad I've finally had one thing turn out to be the proverbial storm, my teacup has been waiting four months for its storm.
Now for sleep, hopefully without the guillotines and cries of terror that have been waking me the last few nights,
Monday, 29 April 2013
Friday, 26 April 2013
Back in hospital
27/4/13. 650pm
It looks like I'll be in hospital until Monday, at the earliest. Although me temperature hasn't been elevated since I came in last night (when I was feeling unwell and my temperature rose from 37.7 to 38.1 over thirty minutes), they're concerned that I had rigours last night when they were flushing my infusaport. I interpreted the sudden shivering, shaking, and teeth-chattering as a psychological reaction to them taking 20 minutes to finally needle my port, but it turns out that it can be a sign of an infection in the port being flushed throughout the body. They would have let me go home today, if it hadn't happened.
I guess in the scheme of things, it's better to find out now, while my white cells are okay, and not to find it out when they're due to do the next chemo (May 8th). The infusaport empties into a large central vein, so if any pathogens start to grow there, they get flushed throughout the body when the line is flushed with saline, which happens whenever they access the line. This is why it's important for them to draw up some blood into a syringe when they access the line, presumably so any pathogens that might be lurking in it will get removed, rather than getting sent throughout the body, which is called a septic shower. The body responds by shivering and shaking, or rigors. Which is what may have happened last night. In the worst case, the body can go into septic shock which is a life-threatening event. BP can drop very low, there can be other scary symptoms, and you can get organ failure. I don't want to go there.
So they're giving me IV vancomycin again, and another one that I can't remember. They'll check my CRP (a measure of infection) each day, and look at how the blood cultures develop on Monday to see if there's any evidence of infection from the bloods taken last night. If there is, the port will have to come out (easy procedure under local anaesthesia), and I can have my final three cycles of chemo through my veins.
How am I feeling through this? Irritated, tired, hoping I've had the last of my side effects. I can't see the point of getting upset. I've given up on the delusional belief that life should be fair. Fairness doesn't come into this. Getting upset by this is not going to help me. Staying positive will.
It looks like I'll be in hospital until Monday, at the earliest. Although me temperature hasn't been elevated since I came in last night (when I was feeling unwell and my temperature rose from 37.7 to 38.1 over thirty minutes), they're concerned that I had rigours last night when they were flushing my infusaport. I interpreted the sudden shivering, shaking, and teeth-chattering as a psychological reaction to them taking 20 minutes to finally needle my port, but it turns out that it can be a sign of an infection in the port being flushed throughout the body. They would have let me go home today, if it hadn't happened.
I guess in the scheme of things, it's better to find out now, while my white cells are okay, and not to find it out when they're due to do the next chemo (May 8th). The infusaport empties into a large central vein, so if any pathogens start to grow there, they get flushed throughout the body when the line is flushed with saline, which happens whenever they access the line. This is why it's important for them to draw up some blood into a syringe when they access the line, presumably so any pathogens that might be lurking in it will get removed, rather than getting sent throughout the body, which is called a septic shower. The body responds by shivering and shaking, or rigors. Which is what may have happened last night. In the worst case, the body can go into septic shock which is a life-threatening event. BP can drop very low, there can be other scary symptoms, and you can get organ failure. I don't want to go there.
So they're giving me IV vancomycin again, and another one that I can't remember. They'll check my CRP (a measure of infection) each day, and look at how the blood cultures develop on Monday to see if there's any evidence of infection from the bloods taken last night. If there is, the port will have to come out (easy procedure under local anaesthesia), and I can have my final three cycles of chemo through my veins.
How am I feeling through this? Irritated, tired, hoping I've had the last of my side effects. I can't see the point of getting upset. I've given up on the delusional belief that life should be fair. Fairness doesn't come into this. Getting upset by this is not going to help me. Staying positive will.
Ups and downs
April 26th. 2013. 1115pm
Eleven years ago tonight I was sleeping in a hospital in Melbourne, waiting for my first child to start the process of bring born. He was ten days overdue, so my obstetrician had given me some gel to induce labour at 830 pm. Ben went home to look after his parents, who were staying with us to look after our dogs. He didn't like the look of the trundle bed in my room.
I went to sleep around 930, and woke at about midnight with tummy pains. I went to the loo, twice, then realised I was having contractions. I called the nurse, who said to time the contractions. I called Ben, who said to call back when I was going to the labour room. I timed the contractions diligently, wondering when the nurse would come back. After thirty minutes, I called the nurse again. "My contractions are coming every two minutes, and lasting 90 seconds. If this is labour, I want an epidural. Now. No, don't worry about a wheelchair, I can walk to the labour ward."
I tried to call Ben while being wheeled upstairs, but he'd left the phone off the hook and had gone back to sleep. I was only 4cm dilated, and the baby was in distress. They stopped the contractions with a shot of ventolin, and I remembered to try Ben's mobile. He arrived thirty minutes later, and little David was born by emergency caesarean at 414am. It had taken that long for a theatre to become available. I saw him briefly, but didn't get to hold him. My BP had dropped very low, and I spent a couple of hours in recovery before I was returned to my room. David was wheeled in, crying his little heart out, but the nurse wouldn't let me hold him until she'd done something or other for me first. When I finally held him, he was red and exhausted from crying.
David's temperament is quite different from nathaniel's, a forceps delivery two and a half years later, who was laid on my chest and slept soundly for the first couple of hours in the air. I wonder increasingly if those very early experiences affected the level of anxiety in my boys, and in the way I have parented them. I know I couldn't bear to be parted from David when he was tiny, and he refused to sleep without me next to him until he was 8. Nathaniel has always been a better sleeper, and far less anxious about me leaving the home.
So it's ironic that I'm back in hospital on the eve of David's birthday. I was feeling well, which made me feel very happy, for most of today, and my bone pain had gone. Nathaniel helped me make David's birthday cake, and David helped me make a gooey chocolate slice. We watched penguins of Madagascar on DVD, the boys played games, I spoke to a friend, and didn't overdo things physically. I started to flag around five, when Ben came home, and I asked him to give me an endone, as my thighs were aching again. I went upstairs, meaning to go out to buy David's present, but suddenly felt unwell. My temperature was 37.7, and rose to 38.1 over the next thirty minutes. So we all came down to the hospital, and now I'm lying in a bed in the plaster room, receiving IV fluids and antibiotics.
My temperature has returned to normal, though I started shivering and shaking (rigours) after they needled my infusaport.
I'm feeling a bit better now, and I hope I'll be able to go home tomorrow for David's birthday. I don't think I'm neutropenic, I hope it's not the flu, and I hope it's the last time I have to come into hospital.
It seems that I need to be very careful not to jinx myself- before I was diagnosed, I told Ben how grateful I was that we hadn't had any major health scares. Today I wrote on Facebook that I was feeling great. Just bad luck I guess, though I understand how people throughout time have believed there must be some quixotic force who rules our fates.
Happy birthday, sweet, wonderful David. I'm so proud of you, I love you so much. I will do everything I can to make sure I'm here for you for many more years to cone.
Eleven years ago tonight I was sleeping in a hospital in Melbourne, waiting for my first child to start the process of bring born. He was ten days overdue, so my obstetrician had given me some gel to induce labour at 830 pm. Ben went home to look after his parents, who were staying with us to look after our dogs. He didn't like the look of the trundle bed in my room.
I went to sleep around 930, and woke at about midnight with tummy pains. I went to the loo, twice, then realised I was having contractions. I called the nurse, who said to time the contractions. I called Ben, who said to call back when I was going to the labour room. I timed the contractions diligently, wondering when the nurse would come back. After thirty minutes, I called the nurse again. "My contractions are coming every two minutes, and lasting 90 seconds. If this is labour, I want an epidural. Now. No, don't worry about a wheelchair, I can walk to the labour ward."
I tried to call Ben while being wheeled upstairs, but he'd left the phone off the hook and had gone back to sleep. I was only 4cm dilated, and the baby was in distress. They stopped the contractions with a shot of ventolin, and I remembered to try Ben's mobile. He arrived thirty minutes later, and little David was born by emergency caesarean at 414am. It had taken that long for a theatre to become available. I saw him briefly, but didn't get to hold him. My BP had dropped very low, and I spent a couple of hours in recovery before I was returned to my room. David was wheeled in, crying his little heart out, but the nurse wouldn't let me hold him until she'd done something or other for me first. When I finally held him, he was red and exhausted from crying.
David's temperament is quite different from nathaniel's, a forceps delivery two and a half years later, who was laid on my chest and slept soundly for the first couple of hours in the air. I wonder increasingly if those very early experiences affected the level of anxiety in my boys, and in the way I have parented them. I know I couldn't bear to be parted from David when he was tiny, and he refused to sleep without me next to him until he was 8. Nathaniel has always been a better sleeper, and far less anxious about me leaving the home.
So it's ironic that I'm back in hospital on the eve of David's birthday. I was feeling well, which made me feel very happy, for most of today, and my bone pain had gone. Nathaniel helped me make David's birthday cake, and David helped me make a gooey chocolate slice. We watched penguins of Madagascar on DVD, the boys played games, I spoke to a friend, and didn't overdo things physically. I started to flag around five, when Ben came home, and I asked him to give me an endone, as my thighs were aching again. I went upstairs, meaning to go out to buy David's present, but suddenly felt unwell. My temperature was 37.7, and rose to 38.1 over the next thirty minutes. So we all came down to the hospital, and now I'm lying in a bed in the plaster room, receiving IV fluids and antibiotics.
My temperature has returned to normal, though I started shivering and shaking (rigours) after they needled my infusaport.
I'm feeling a bit better now, and I hope I'll be able to go home tomorrow for David's birthday. I don't think I'm neutropenic, I hope it's not the flu, and I hope it's the last time I have to come into hospital.
It seems that I need to be very careful not to jinx myself- before I was diagnosed, I told Ben how grateful I was that we hadn't had any major health scares. Today I wrote on Facebook that I was feeling great. Just bad luck I guess, though I understand how people throughout time have believed there must be some quixotic force who rules our fates.
Happy birthday, sweet, wonderful David. I'm so proud of you, I love you so much. I will do everything I can to make sure I'm here for you for many more years to cone.
Tuesday, 23 April 2013
Cycle 3, day 7
(School holidays, lovely weather, marred by sore tongue and increased awareness of GI tract.)
My tongue feels awful. It's sore and sensitive, a little like the feeling when you've eaten too many chips, only the whole tip and first third is in pain. There's a pain-free bit in the middle, but then it starts again at the back of my tongue, goes down my throat, through my gut, and ends up... Well, I won't give you too much information. It's enough to say I'm afraid of going to the loo.
I have had to start taking the Clindamycin as single capsules again, the chemo has obviously done its job and stripped my guts of the fast-growing cells, leaving me with a bundle of sensitive nerves. It's hard to know what to eat - smooth and bland things seem to work. I'm having vanilla frûche with my capsules just now, the cold is divine, but the acid stings my tongue, and I found myself sucking on the cold spoon for its magical soothing qualities. I have never received sensual solace from a spoon before!
It's easy to settle into a routine with chemo. After the first round, where fear of the unknown and a run of bad luck heightened every experience, we've almost habituated to it. The chemo nurse who removed my needle today said that patients assume that the clinic is only for giving chemo, when in reality it is there to help with managing the side effects as well.
The first few days of this round weren't too bad: I took all the antinausea drugs prophylactically, and it worked, to the point that I think we'd almost forgotten that I had chemo last Wednesday, until my tongue started to get sore last night. I've stocked up on a sodium bicarbonate mouthwash to cleanse after brushing, nystatin to prevent thrush, and an antiseptic mouthwash called Difflam that I haven't dared to try yet, they said it might sting. Ben ordered some emu oil capsules on the Internet after reading that they can be good for the gut during chemo - I took one tonight, but I'm not keen on eating emu oil, even in capsule form. They smell weird, and I am sick of taking pills.
In the scheme of things, I'm feeling okay, and a bit of a wuss writing about a sore tongue, given the far greater loss and suffering that has been happening in the world this past week, what with bombings in Boston, earthquakes in china, the gas explosion in Texas, and all the other bad news that I usually block out through being busy.
Chrissy Amphlett's death has been a sobering reminder that breast cancer can be fatal, and I'm aware of a whole range of thoughts that I haven't been allowing myself to think. Like how damned lucky it is that my tumour was caught before it spread, what might have happened if it hadn't been caught early, and a simmering annoyance that it wasn't detected last year. I'd be over my treatment by now, if it had been, but... It wasn't detected last year, it's happening this year, and I hope and pray that the treatment goes well so that I can live another fifty years in good health. I'm so sad for Chrissy's family, and for all those who have lost people to cancer. It's such a bitch of an illness, sneaking up and invading a body, disrupting the lives of all those involved, and still sometimes stealing life despite the most valiant fight. I think I'll pack all that away for after my treatment is over, I need to keep focussed on getting through each day, managing symptoms as they arise. I'd rather spend my energy on trying to stay well, enjoying my family, and looking forward to the future, rather than worrying.
I dreamt about Dad's mother, Jessie, last night. The dream gave me a sense of love and safety, and continuity with my family. I never knew her, she died of cancer in 1952, so it's strange that I dreamed about her. She had 14 children, 31 grandchildren, and reportedly told a cousin that she always wanted to have children in the house, she loved them so much. I wish I could have known her, she was deeply loved by my aunts and uncles. A wonderful thing about being back home is the sense of connectedness to family. When I see them, I get a sense of stillness and calm acceptance that is wonderful, even when tinged with teasing and stirring from the male members of the family. I had that sense of beneficence in my dream, I hope I experience it more often.
420am. Bugger. I'd forgotten about the bone pain. My thighs are aching so much, and my pelvis. I tried to get back to sleep for half and hour, but my amateur attempts at self-hypnosis didn't work. So I've taken an NSAID (advil, because paracetamol didn't work last cycle), and I'm sitting up to get started on my first dose of Clindamycin for the day (accompanied by some yoplait LeRice, just for something different). My elbows and shoulders are aching too. I hope the pain goes away soon, it's not much fun.
433am. I now have two young companions in my bed. Poor old Po, our 15yo blind, deaf, and cognitively compromised Tibetan spaniel was whining. Nathaniel woke Ben up (they all sleep in the same room while I'm having chemo), Po peed on Ben's arm, and Ben is now having to clean up a stinky doggy mess. It's hard not to laugh.
My tongue feels awful. It's sore and sensitive, a little like the feeling when you've eaten too many chips, only the whole tip and first third is in pain. There's a pain-free bit in the middle, but then it starts again at the back of my tongue, goes down my throat, through my gut, and ends up... Well, I won't give you too much information. It's enough to say I'm afraid of going to the loo.
I have had to start taking the Clindamycin as single capsules again, the chemo has obviously done its job and stripped my guts of the fast-growing cells, leaving me with a bundle of sensitive nerves. It's hard to know what to eat - smooth and bland things seem to work. I'm having vanilla frûche with my capsules just now, the cold is divine, but the acid stings my tongue, and I found myself sucking on the cold spoon for its magical soothing qualities. I have never received sensual solace from a spoon before!
It's easy to settle into a routine with chemo. After the first round, where fear of the unknown and a run of bad luck heightened every experience, we've almost habituated to it. The chemo nurse who removed my needle today said that patients assume that the clinic is only for giving chemo, when in reality it is there to help with managing the side effects as well.
The first few days of this round weren't too bad: I took all the antinausea drugs prophylactically, and it worked, to the point that I think we'd almost forgotten that I had chemo last Wednesday, until my tongue started to get sore last night. I've stocked up on a sodium bicarbonate mouthwash to cleanse after brushing, nystatin to prevent thrush, and an antiseptic mouthwash called Difflam that I haven't dared to try yet, they said it might sting. Ben ordered some emu oil capsules on the Internet after reading that they can be good for the gut during chemo - I took one tonight, but I'm not keen on eating emu oil, even in capsule form. They smell weird, and I am sick of taking pills.
In the scheme of things, I'm feeling okay, and a bit of a wuss writing about a sore tongue, given the far greater loss and suffering that has been happening in the world this past week, what with bombings in Boston, earthquakes in china, the gas explosion in Texas, and all the other bad news that I usually block out through being busy.
Chrissy Amphlett's death has been a sobering reminder that breast cancer can be fatal, and I'm aware of a whole range of thoughts that I haven't been allowing myself to think. Like how damned lucky it is that my tumour was caught before it spread, what might have happened if it hadn't been caught early, and a simmering annoyance that it wasn't detected last year. I'd be over my treatment by now, if it had been, but... It wasn't detected last year, it's happening this year, and I hope and pray that the treatment goes well so that I can live another fifty years in good health. I'm so sad for Chrissy's family, and for all those who have lost people to cancer. It's such a bitch of an illness, sneaking up and invading a body, disrupting the lives of all those involved, and still sometimes stealing life despite the most valiant fight. I think I'll pack all that away for after my treatment is over, I need to keep focussed on getting through each day, managing symptoms as they arise. I'd rather spend my energy on trying to stay well, enjoying my family, and looking forward to the future, rather than worrying.
I dreamt about Dad's mother, Jessie, last night. The dream gave me a sense of love and safety, and continuity with my family. I never knew her, she died of cancer in 1952, so it's strange that I dreamed about her. She had 14 children, 31 grandchildren, and reportedly told a cousin that she always wanted to have children in the house, she loved them so much. I wish I could have known her, she was deeply loved by my aunts and uncles. A wonderful thing about being back home is the sense of connectedness to family. When I see them, I get a sense of stillness and calm acceptance that is wonderful, even when tinged with teasing and stirring from the male members of the family. I had that sense of beneficence in my dream, I hope I experience it more often.
420am. Bugger. I'd forgotten about the bone pain. My thighs are aching so much, and my pelvis. I tried to get back to sleep for half and hour, but my amateur attempts at self-hypnosis didn't work. So I've taken an NSAID (advil, because paracetamol didn't work last cycle), and I'm sitting up to get started on my first dose of Clindamycin for the day (accompanied by some yoplait LeRice, just for something different). My elbows and shoulders are aching too. I hope the pain goes away soon, it's not much fun.
433am. I now have two young companions in my bed. Poor old Po, our 15yo blind, deaf, and cognitively compromised Tibetan spaniel was whining. Nathaniel woke Ben up (they all sleep in the same room while I'm having chemo), Po peed on Ben's arm, and Ben is now having to clean up a stinky doggy mess. It's hard not to laugh.
Wednesday, 17 April 2013
Round 3, or how to get knocked out in four hours
Took the boys to school this morning, collected my antinausea meds from the Holman Clinic at 9, went home and worked on finishing some of the paperwork that has been mounting up. Took my Enmed tablet at 930, one hour before my chemo appointment, tried not to listen to the ongoing coverage of the Boston marathon bombing, though the familiar images of Boylston St and the Boston accents kept drawing me in. I'll have to take Ben and the kids there one day, to get it out of my system.
My six months in Boston, from June 1997, were lonely and weird. I took refuge in watching M.A.S.H. and Star Trek on tv at night, as they felt more real than the world outside my room. It felt most real when Stephe, Catherine and Viv came over from work for the epilepsy conference, near the end of my stay (I have a photo of us walking in the snow near Copley Square, just up from yesterday's bomb blasts). I made some dear friends in Boston (I miss you!), and met lots of other wonderful people. It is awful to think of the shock and trauma the community must be going through. I'm trying to stay detached from it, and am managing a sense of disbelief. I don't want to allow myself to feel as upset as I was by 9/11, the Japanese tsunami, and the Victorian bush fires of 2009 (literally too close to home). Prayers and love for the people affected by the bombings, and all traumatic events everywhere.
One more task completed by 1015, Ben came to collect me for my 1030 session. We checked in, and went to the main waiting area and waited, and waited, Finally called in just after 11 by Monday's nurse. Seated away from the windows with their view of the garden, I discovered that she should have put a cap on the line from my needle. I asked the new nurse what he could do about it - he said he could clean it thoroughly, or put in a new needle. I chose the latter - don't want any chance of sepsis. He said it was a wise choice, as the infusaport empties into a central vein. If an infective agent gets in that way, it's like a "septic shower," I.e., the bacteria gets distributed all over the body. Not good. So I received a brand new needle in one sharp jab (not as stinging as the local anaesthetic). Walked out at 230, feeling ok after a little nap and a few trips to the loo (drinking two litres of water tends to have that effect). The nurse capped off the line with a positive pressure cap, so I am not allowed to seal the line with the little yellow clamp. Amazing technologies, so grateful for out universal health system, it costs people in America thousands to access this treatment, even with private insurance.. The main cost to us has been over $300 on medications.
When I returned home, I took all my anti nausea meds. I thought I might try a prophylactic approach, rather than taking them when symptoms appeared. It seemed to work - I haven't felt sick, just deeply tired. I had to crawl into bed at 730, and couldn't muster the energy to converse with David, who was a little offended by my "can't talk, need sleep" comments. I woke up at 1115, so I've had my Clindamycin and anti nausea meds, and now I'll be back to sleep. Need my G-CSF shot at 230 tomorrow, then I hope to cruise through this last three weeks of FEC.
Next chemo: Taxotere (doxetaxal). Main side effects - pain, oedema. May lose my eyelashes and eyebrows. Will need to wear ice gloves during chemo to reduce risk of peripheral neuropathy. I asked if they have ice socks as well - two friends and a cousin have peripheral neuropathy after chemo, and it's the problems with balance that bother them most...
Nearly half-way there...
My six months in Boston, from June 1997, were lonely and weird. I took refuge in watching M.A.S.H. and Star Trek on tv at night, as they felt more real than the world outside my room. It felt most real when Stephe, Catherine and Viv came over from work for the epilepsy conference, near the end of my stay (I have a photo of us walking in the snow near Copley Square, just up from yesterday's bomb blasts). I made some dear friends in Boston (I miss you!), and met lots of other wonderful people. It is awful to think of the shock and trauma the community must be going through. I'm trying to stay detached from it, and am managing a sense of disbelief. I don't want to allow myself to feel as upset as I was by 9/11, the Japanese tsunami, and the Victorian bush fires of 2009 (literally too close to home). Prayers and love for the people affected by the bombings, and all traumatic events everywhere.
One more task completed by 1015, Ben came to collect me for my 1030 session. We checked in, and went to the main waiting area and waited, and waited, Finally called in just after 11 by Monday's nurse. Seated away from the windows with their view of the garden, I discovered that she should have put a cap on the line from my needle. I asked the new nurse what he could do about it - he said he could clean it thoroughly, or put in a new needle. I chose the latter - don't want any chance of sepsis. He said it was a wise choice, as the infusaport empties into a central vein. If an infective agent gets in that way, it's like a "septic shower," I.e., the bacteria gets distributed all over the body. Not good. So I received a brand new needle in one sharp jab (not as stinging as the local anaesthetic). Walked out at 230, feeling ok after a little nap and a few trips to the loo (drinking two litres of water tends to have that effect). The nurse capped off the line with a positive pressure cap, so I am not allowed to seal the line with the little yellow clamp. Amazing technologies, so grateful for out universal health system, it costs people in America thousands to access this treatment, even with private insurance.. The main cost to us has been over $300 on medications.
When I returned home, I took all my anti nausea meds. I thought I might try a prophylactic approach, rather than taking them when symptoms appeared. It seemed to work - I haven't felt sick, just deeply tired. I had to crawl into bed at 730, and couldn't muster the energy to converse with David, who was a little offended by my "can't talk, need sleep" comments. I woke up at 1115, so I've had my Clindamycin and anti nausea meds, and now I'll be back to sleep. Need my G-CSF shot at 230 tomorrow, then I hope to cruise through this last three weeks of FEC.
Next chemo: Taxotere (doxetaxal). Main side effects - pain, oedema. May lose my eyelashes and eyebrows. Will need to wear ice gloves during chemo to reduce risk of peripheral neuropathy. I asked if they have ice socks as well - two friends and a cousin have peripheral neuropathy after chemo, and it's the problems with balance that bother them most...
Nearly half-way there...
Monday, 15 April 2013
Ready for round three
My third round of chemo is scheduled for Wednesday at 1030. I feel cautiously optimistic that it will go okay this time, I have Stemetil in the fridge to prevent the feeling of motion sickness, and the G-CSF seemed to help prevent infection. In three weeks I'll be half-way through my chemo, with the final round due to start on June 12th.
I went in to have my pre-chemo bloods done yesterday morning after school drop off, thinking that I might go to the pathology department and see if my vein would hold up (poor thing collapsed last time). Then I noticed that they'd booked me to have my bloods done in the Holman clinic, followed by "VAD care," whatever that was. So I dutifully went to the clinic and had a needle put into my infusaport so they could draw blood. VAD stands for venous access device (nothing to do with VD, thankfully).
I felt quite anxious waiting for the nurse as she prepared the multiple syringes of saline (to flush my port), putting everything out on a sterile cloth, scrubbing her hands and fingernails, donning gloves. I practiced my breathing and relaxation techniques, and wished I'd thought to have some lorazepam. There seems to be an increase in anxiety as I become more familiar with the process, not a decrease from habituation. Damn.
The nurse didn't seem as experienced as some of the others, and I'm glad I asked for a local anesthetic - she had two attempts at putting the needle in, and was having trouble drawing blood, until she realised she needed to remove something from the needle. The whole process tok about an hour, including time wasted because they sent me to the wrong waiting room. It's a nice small white needle that's been left in, compared to my previous blue ones, and at least I won't need to have it done again tomorrow.
I've been very tired the last few days, thanks to an attempt to regain some fitness by using the treadmill. I've done it three days in a row now, 36minutes at 5pm/h on a variable incline (alternating 1 or 5 degrees every three minutes). I used to be able to do more than that at 6.5km/h prior to surgery, so I've lost quite a bit of condition. I just need to maintain what I have, even though it makes me feel very tired and I absolutely need to sleep in the afternoon,
Exercise helps with mood and recovery, and will hopefully prevent too much weight gain (the majority of people gain 5-15 kg during chemo for breast cancer). I'd lost 14kg between June 2011 and February 2012 through exercise and the Dukan diet, but I put the weight back on after Dad died and I started eating food with sugar and wheat again, I know I shouldn't try to lose weight during treatment, but I don't want to gain it. It's depressing to look for clothes that fit. I tried on 8 pairs of jeans last week, and couldn't pull 6 of them up. Women don't have thighs this season, apparently.
The boys are sleeping in my bed tonight, both wanted to stay home yesterday. David was distraught last night, saying he can't sleep and couldn't concentrate at school because he's worried about me. It doesn't help that he has a term's worth of homework to finish in the last week of school, but I'm annoyed that his teacher hasn't been checking on his progress over the term, as promised on the homework sheet that gives year 5 kids a minimum of six projects to do at their own pace over the term. He's completed two, in the last two weeks, with much complaining and many tears. I haven't had the energy to help him do it this term. Will talk to the school tomorrow, we don't need another stressor - we have more than enough already, have had for the past 11 years. I only hope our family's run of health issues ends soon, with good outcomes for everyone.
I was looking for advice on how to help children cope with having a parent with cancer, and found instead an article that summarizes well-intentioned things that people say. You can see it here. It helped me to understand why these things irritate me so much sometimes. I'm probably guilty of saying similar things to people in the past - it's so hard to know what to say, it's good to know what not to say.
There are a number of similar articles on the web, if you want to look. This last one is from a blog written by a woman with stage 4 breast cancer. It is simultaneously funny and sobering - a view of the trials for those with metastatic breast cancer. It is comprehensive and tackles the "brave" comments, but also gives practical advice on what to say or do. Read it here.
I hope my cancer never recurs, and that I get through my treatment ok. I'm doing nearly everything I can to maximize my chances of a good recovery, though giving up sugar is proving difficult when working out what to eat is a daily puzzle. I don't feel brave. I'm just doing what I can to survive, because I want to see my boys grow up, I want to be there for them every step of the way.
I went in to have my pre-chemo bloods done yesterday morning after school drop off, thinking that I might go to the pathology department and see if my vein would hold up (poor thing collapsed last time). Then I noticed that they'd booked me to have my bloods done in the Holman clinic, followed by "VAD care," whatever that was. So I dutifully went to the clinic and had a needle put into my infusaport so they could draw blood. VAD stands for venous access device (nothing to do with VD, thankfully).
I felt quite anxious waiting for the nurse as she prepared the multiple syringes of saline (to flush my port), putting everything out on a sterile cloth, scrubbing her hands and fingernails, donning gloves. I practiced my breathing and relaxation techniques, and wished I'd thought to have some lorazepam. There seems to be an increase in anxiety as I become more familiar with the process, not a decrease from habituation. Damn.
The nurse didn't seem as experienced as some of the others, and I'm glad I asked for a local anesthetic - she had two attempts at putting the needle in, and was having trouble drawing blood, until she realised she needed to remove something from the needle. The whole process tok about an hour, including time wasted because they sent me to the wrong waiting room. It's a nice small white needle that's been left in, compared to my previous blue ones, and at least I won't need to have it done again tomorrow.
I've been very tired the last few days, thanks to an attempt to regain some fitness by using the treadmill. I've done it three days in a row now, 36minutes at 5pm/h on a variable incline (alternating 1 or 5 degrees every three minutes). I used to be able to do more than that at 6.5km/h prior to surgery, so I've lost quite a bit of condition. I just need to maintain what I have, even though it makes me feel very tired and I absolutely need to sleep in the afternoon,
Exercise helps with mood and recovery, and will hopefully prevent too much weight gain (the majority of people gain 5-15 kg during chemo for breast cancer). I'd lost 14kg between June 2011 and February 2012 through exercise and the Dukan diet, but I put the weight back on after Dad died and I started eating food with sugar and wheat again, I know I shouldn't try to lose weight during treatment, but I don't want to gain it. It's depressing to look for clothes that fit. I tried on 8 pairs of jeans last week, and couldn't pull 6 of them up. Women don't have thighs this season, apparently.
The boys are sleeping in my bed tonight, both wanted to stay home yesterday. David was distraught last night, saying he can't sleep and couldn't concentrate at school because he's worried about me. It doesn't help that he has a term's worth of homework to finish in the last week of school, but I'm annoyed that his teacher hasn't been checking on his progress over the term, as promised on the homework sheet that gives year 5 kids a minimum of six projects to do at their own pace over the term. He's completed two, in the last two weeks, with much complaining and many tears. I haven't had the energy to help him do it this term. Will talk to the school tomorrow, we don't need another stressor - we have more than enough already, have had for the past 11 years. I only hope our family's run of health issues ends soon, with good outcomes for everyone.
I was looking for advice on how to help children cope with having a parent with cancer, and found instead an article that summarizes well-intentioned things that people say. You can see it here. It helped me to understand why these things irritate me so much sometimes. I'm probably guilty of saying similar things to people in the past - it's so hard to know what to say, it's good to know what not to say.
There are a number of similar articles on the web, if you want to look. This last one is from a blog written by a woman with stage 4 breast cancer. It is simultaneously funny and sobering - a view of the trials for those with metastatic breast cancer. It is comprehensive and tackles the "brave" comments, but also gives practical advice on what to say or do. Read it here.
I hope my cancer never recurs, and that I get through my treatment ok. I'm doing nearly everything I can to maximize my chances of a good recovery, though giving up sugar is proving difficult when working out what to eat is a daily puzzle. I don't feel brave. I'm just doing what I can to survive, because I want to see my boys grow up, I want to be there for them every step of the way.
Wednesday, 10 April 2013
FEC cycle 2, day 15
I love April!
The weather is sublime - warm days, cool nights - and the slowly changing foliage is beautiful. The attached photo is of cotoneaster berries on one of our evening walks - so red and luscious, great food for native birds - pity it's an invasive weed. The other photo is of a mushroom that forced its way through some year-old bitumen in our street. Amazing to see the power of plants. Bitumen isn't as hard as concrete, but you don't think of mushrooms as something strong enough to lift and break bitumen.
I am feeling really good this week. The G-CSF shot caused bone pain briefly last week (my whole pelvis ached, a little like it did 11 years ago when I was heavily pregnant with David, only worse), but it seems to have looked after my white blood cells. My neutrophils were down to 1.25 last week, but I'm feeling well, and there's been no sign of a fever. (Touch wood!)
I was bothered by fatigue in the last week, and the accompanying irritability (I just need to lie down and be left alone - Kevin McCloud's voice on Grand Designs is so soporific! I feel relaxed just thinking about his mellifluous tones...), but now I'm feeling well, and it's so good to feel well again after feeling unwell. I feel almost euphoric (and no opiates on board to take the blame!).
I think my euphoria is because the chemo made me feel so unwell, I started to think it was the new normal. So it's utterly brilliant to feel well, to realise that the chemo-malaise is only transitory, and that I will hopefully have many more years of feeling well ahead of me, once I get through the chemo.
There are lots of other things I'm grateful for:
- the physio doesn't need to see me for a month - my cording (aka axillary web syndrome) seems to have gone away
- I don't have lymphedema
- my seroma has gone away
- the prophylactic antibiotics seem to have kept my cellulitis under control
- I'm now able to take all three clyndamycin tablets at the same time, so it doesn't take 1.5 hours to complete one dose. I'm taking them at 530, 1130, 530, and 1030 each day
- daylight savings has ended, and I'm getting 6 hours sleep each night, instead of 2 to 4
- being bald isn't that bad, apart from the cold
- people say I have a beautifully-shaped head, and my eyes (previously squinty-looking) seem bigger without hair (DK why)
- I enjoy being flat-chested, even if unilaterally so. I am eager to get rid of the other breast, and I'm not sure that I want a reconstruction. Boobs are over-rated
- my family and friends are being wonderful and supportive
- I'm enjoying being a stay-at-home mum - far less stressed when taking the boys to school, when I don't have work to look forward to
- it's just started raining (I love the sound of rain on a cast-iron roof)
- I'm feeling okay to be driving at the moment
- it is indescribably good to be living in my home town, close to family and friends
- I have nothing to complain about, compared to the children and young people with disabilities who I seem to keep seeing around. I am humbled by their persistence.
- I have wonderful people looking after me, and lots of people praying for me in their own religious or non-religious ways
- Life is precious, and I've been given a gift, being diagnosed before the cancer spread.
- our little dog, Po-Po (named Patrul after the vagabond Tibetan saint) is turning 15 tomorrow, and is comfortable one year after he lost his hair due to cutaneous lymphoma. He may be deaf, blind, toileting inside, and only able to walk in circles, but he loves his food, is not in pain, and loves being patted. We didn't think he'd live this long
- my friend down the road has a cocker spaniel puppy who reminds me of our dear dog Cindy (1981-1995), it reminds me of all the love and wonderful times growing up, and I just want to kidnap the dear little thing whenever I pat her.
- we have wonderful neighbours, who I need to visit more often.
- I now own a beautiful cherry-red cashmere scarf, after a lifetime of avoiding red clothes (they made me feel agitated, I preferred calming blues, whites, greys, purple and black). I feel like I need the energy the colour gives me. Weird, eh?
They say it's good to write down three things that you're grateful for at the end of each day. I'm feeling content and happy after writing that list - I'm sure there are more things I can add, but I don't want to bore you...And I'm trying to stay relevant
I've been busy talking to builders and landscapers this week (need to have a project, or two, to keep me distracted - renovations won't start until after treatment is over), and I've started practicing Beethoven's Sonata in C minor ('Pathetique') and listening to his symphonies in bed each night. So I have Beethoven in my dreams and in my mind as I wake. I'm also getting sick of TV (so much rubbish!), so I'm reading and listening to classical music, and I think I might start painting soon...though I also want to bake lots of wonderful food for my family and friends...I just have to be careful not to overdo it. Despite what sounds like slightly manic energy above, I still need to rest on the couch for a few hours each day, and sometimes sleep. It's just so good to be feeling normal, even if temporarily so.
Seven days left until the last dose of FEC, I plan to make the most of it! (imagine a granny trying to speed with a four-point walking frame (might need to watch 'The Producers' tomorrow;))
PS - I've disabled the comments option on this blog, as it seemed to be crashing for a number of people (myself included, after one particularly eloquent response). Feel free to email me if you'd like to
X
The weather is sublime - warm days, cool nights - and the slowly changing foliage is beautiful. The attached photo is of cotoneaster berries on one of our evening walks - so red and luscious, great food for native birds - pity it's an invasive weed. The other photo is of a mushroom that forced its way through some year-old bitumen in our street. Amazing to see the power of plants. Bitumen isn't as hard as concrete, but you don't think of mushrooms as something strong enough to lift and break bitumen.
I am feeling really good this week. The G-CSF shot caused bone pain briefly last week (my whole pelvis ached, a little like it did 11 years ago when I was heavily pregnant with David, only worse), but it seems to have looked after my white blood cells. My neutrophils were down to 1.25 last week, but I'm feeling well, and there's been no sign of a fever. (Touch wood!)
I was bothered by fatigue in the last week, and the accompanying irritability (I just need to lie down and be left alone - Kevin McCloud's voice on Grand Designs is so soporific! I feel relaxed just thinking about his mellifluous tones...), but now I'm feeling well, and it's so good to feel well again after feeling unwell. I feel almost euphoric (and no opiates on board to take the blame!).
I think my euphoria is because the chemo made me feel so unwell, I started to think it was the new normal. So it's utterly brilliant to feel well, to realise that the chemo-malaise is only transitory, and that I will hopefully have many more years of feeling well ahead of me, once I get through the chemo.
There are lots of other things I'm grateful for:
- the physio doesn't need to see me for a month - my cording (aka axillary web syndrome) seems to have gone away
- I don't have lymphedema
- my seroma has gone away
- the prophylactic antibiotics seem to have kept my cellulitis under control
- I'm now able to take all three clyndamycin tablets at the same time, so it doesn't take 1.5 hours to complete one dose. I'm taking them at 530, 1130, 530, and 1030 each day
- daylight savings has ended, and I'm getting 6 hours sleep each night, instead of 2 to 4
- being bald isn't that bad, apart from the cold
- people say I have a beautifully-shaped head, and my eyes (previously squinty-looking) seem bigger without hair (DK why)
- I enjoy being flat-chested, even if unilaterally so. I am eager to get rid of the other breast, and I'm not sure that I want a reconstruction. Boobs are over-rated
- my family and friends are being wonderful and supportive
- I'm enjoying being a stay-at-home mum - far less stressed when taking the boys to school, when I don't have work to look forward to
- it's just started raining (I love the sound of rain on a cast-iron roof)
- I'm feeling okay to be driving at the moment
- it is indescribably good to be living in my home town, close to family and friends
- I have nothing to complain about, compared to the children and young people with disabilities who I seem to keep seeing around. I am humbled by their persistence.
- I have wonderful people looking after me, and lots of people praying for me in their own religious or non-religious ways
- Life is precious, and I've been given a gift, being diagnosed before the cancer spread.
- our little dog, Po-Po (named Patrul after the vagabond Tibetan saint) is turning 15 tomorrow, and is comfortable one year after he lost his hair due to cutaneous lymphoma. He may be deaf, blind, toileting inside, and only able to walk in circles, but he loves his food, is not in pain, and loves being patted. We didn't think he'd live this long
- my friend down the road has a cocker spaniel puppy who reminds me of our dear dog Cindy (1981-1995), it reminds me of all the love and wonderful times growing up, and I just want to kidnap the dear little thing whenever I pat her.
- we have wonderful neighbours, who I need to visit more often.
- I now own a beautiful cherry-red cashmere scarf, after a lifetime of avoiding red clothes (they made me feel agitated, I preferred calming blues, whites, greys, purple and black). I feel like I need the energy the colour gives me. Weird, eh?
They say it's good to write down three things that you're grateful for at the end of each day. I'm feeling content and happy after writing that list - I'm sure there are more things I can add, but I don't want to bore you...And I'm trying to stay relevant
I've been busy talking to builders and landscapers this week (need to have a project, or two, to keep me distracted - renovations won't start until after treatment is over), and I've started practicing Beethoven's Sonata in C minor ('Pathetique') and listening to his symphonies in bed each night. So I have Beethoven in my dreams and in my mind as I wake. I'm also getting sick of TV (so much rubbish!), so I'm reading and listening to classical music, and I think I might start painting soon...though I also want to bake lots of wonderful food for my family and friends...I just have to be careful not to overdo it. Despite what sounds like slightly manic energy above, I still need to rest on the couch for a few hours each day, and sometimes sleep. It's just so good to be feeling normal, even if temporarily so.
Seven days left until the last dose of FEC, I plan to make the most of it! (imagine a granny trying to speed with a four-point walking frame (might need to watch 'The Producers' tomorrow;))
PS - I've disabled the comments option on this blog, as it seemed to be crashing for a number of people (myself included, after one particularly eloquent response). Feel free to email me if you'd like to
X
Wednesday, 3 April 2013
Cycle 2, day 9
4am by the Post Office clock. Have just swallowed my third Clindamycin with some custard (having transitioned from peaches/cream, peaches/yoghurt, raspberries/yoghurt).
I was supposed to take the dreaded antibiotic at 11 last night, but fell asleep around 9 and didn't wake until 230. I was having such a good sleep, I didn't want to wake up and take the tablets, but as they only last in the system for 6 hours, I didn't want to give any lurking bacteria the chance to breed for 12 hours, not when my white cells are probably diminishing in number.
This cycle hasn't been too bad. I had awful motion sickness on the first night, but I've got some stemetil now, so I'll be able to avoid that feeling the next time. I spent the second day back in the Holman Clinic, sleeping and getting IV fluids in the morning, then sleeping until my G-CSF injection later in the afternoon. The nurses didn't have a problem with me staying another couple of hours, I would have had to come back anyway, and they had another room in case anyone else needed to come in.
The worst thing this cycle has been the fatigue, and irritability. The latter might have been compounded by the 5-day break over Easter. Having the kids home is lovely, but they can be so demanding, and my usual school-day routine of relaxing on the couch doesn't work when the boys are around. I also find it hard not to potter around in the kitchen, but it wears me out.
I took the boys to school yesterday morning, and collected them in the afternoon after a nice long nap. I was very careful with my driving, it seems to take a lot of effort to concentrate on the road, and I think I won't drive again until I feel better. When we got home, I had to lie down, and I couldn't bear to talk to anyone - the energy required was too much, and I found it very irritating. Mum brought Hannah back from a CWA function, and Hannah was brimming with happy stories her day. I couldn't bear to listen, I had to ask her to sit down and watch Grand Designs with me and to stop talking. I felt incredibly rude, and I still feel bad about it, but I just couldn't cope with having to listen actively, it just took too much energy. I'll need to manage my fatigue better, so that I'm not grumpy with the people I love, which makes me even grumpier out of guilt and shame.
A final note before I go back to sleep - at school today, I saw a mum who I haven't seen since before I was diagnosed. She was rushing to collect her son, and I called out to her because I was so happy to see her again. She did a double-take when she saw me (standing bald-headed because it was too hot in the sun for my beanie). I thought I'd told her about the diagnosis by text message, but she apparently didn't know, though she said she'd heard rumours and didn't want to ask. It was a weird interaction - I feel the same person as before, I was happy to see her, I forgot that I was bald... She seemed embarrassed, shocked, awkward... I felt bad for her discomfort, and I wished I had the time to talk to her properly, but she was obviously in a hurry.
It's the first awkward interaction I've had with anyone since I was diagnosed. Not bad for 2 months, I guess, though it gives rise to unfamiliar feelings - the sense that someone may think that I've changed because my appearance has changed; the concern that someone might avoid seeing me because of my diagnosis or the fears and feelings they might have about cancer; the sense that I am still me, even though I'm having some rather revolting treatment right now; the realization that, yes, this is a serious illness, and that I've been guilty in the past of avoiding people because I've been worried about them or couldn't bear to see them unwell. Which makes me feel bad for my cowardice, my avoiding seeing people I love because of the pain it caused me to see them suffer. They were still the same people, with the same need for contact from others, an even greater need because of their suffering. How bloody selfish of me to avoid seeing them because they were sick and it upset me! They were living with it, they would have liked to see me, but I ran and hid because I didn't want to see them suffer, because it made me feel bad. They were still the same people, despite the illnesses, with the same need for contact with other people. I hope there's a heaven, so I can apologize when I see them again. But for this life, no more running away from people I care about because of fear of feeling sad or angry about what they're going through. The fear, sadness, and anger are my baggage. The interaction with them will be good, and a manifestation of love, the most powerful force in the universe.
I was supposed to take the dreaded antibiotic at 11 last night, but fell asleep around 9 and didn't wake until 230. I was having such a good sleep, I didn't want to wake up and take the tablets, but as they only last in the system for 6 hours, I didn't want to give any lurking bacteria the chance to breed for 12 hours, not when my white cells are probably diminishing in number.
This cycle hasn't been too bad. I had awful motion sickness on the first night, but I've got some stemetil now, so I'll be able to avoid that feeling the next time. I spent the second day back in the Holman Clinic, sleeping and getting IV fluids in the morning, then sleeping until my G-CSF injection later in the afternoon. The nurses didn't have a problem with me staying another couple of hours, I would have had to come back anyway, and they had another room in case anyone else needed to come in.
The worst thing this cycle has been the fatigue, and irritability. The latter might have been compounded by the 5-day break over Easter. Having the kids home is lovely, but they can be so demanding, and my usual school-day routine of relaxing on the couch doesn't work when the boys are around. I also find it hard not to potter around in the kitchen, but it wears me out.
I took the boys to school yesterday morning, and collected them in the afternoon after a nice long nap. I was very careful with my driving, it seems to take a lot of effort to concentrate on the road, and I think I won't drive again until I feel better. When we got home, I had to lie down, and I couldn't bear to talk to anyone - the energy required was too much, and I found it very irritating. Mum brought Hannah back from a CWA function, and Hannah was brimming with happy stories her day. I couldn't bear to listen, I had to ask her to sit down and watch Grand Designs with me and to stop talking. I felt incredibly rude, and I still feel bad about it, but I just couldn't cope with having to listen actively, it just took too much energy. I'll need to manage my fatigue better, so that I'm not grumpy with the people I love, which makes me even grumpier out of guilt and shame.
A final note before I go back to sleep - at school today, I saw a mum who I haven't seen since before I was diagnosed. She was rushing to collect her son, and I called out to her because I was so happy to see her again. She did a double-take when she saw me (standing bald-headed because it was too hot in the sun for my beanie). I thought I'd told her about the diagnosis by text message, but she apparently didn't know, though she said she'd heard rumours and didn't want to ask. It was a weird interaction - I feel the same person as before, I was happy to see her, I forgot that I was bald... She seemed embarrassed, shocked, awkward... I felt bad for her discomfort, and I wished I had the time to talk to her properly, but she was obviously in a hurry.
It's the first awkward interaction I've had with anyone since I was diagnosed. Not bad for 2 months, I guess, though it gives rise to unfamiliar feelings - the sense that someone may think that I've changed because my appearance has changed; the concern that someone might avoid seeing me because of my diagnosis or the fears and feelings they might have about cancer; the sense that I am still me, even though I'm having some rather revolting treatment right now; the realization that, yes, this is a serious illness, and that I've been guilty in the past of avoiding people because I've been worried about them or couldn't bear to see them unwell. Which makes me feel bad for my cowardice, my avoiding seeing people I love because of the pain it caused me to see them suffer. They were still the same people, with the same need for contact from others, an even greater need because of their suffering. How bloody selfish of me to avoid seeing them because they were sick and it upset me! They were living with it, they would have liked to see me, but I ran and hid because I didn't want to see them suffer, because it made me feel bad. They were still the same people, despite the illnesses, with the same need for contact with other people. I hope there's a heaven, so I can apologize when I see them again. But for this life, no more running away from people I care about because of fear of feeling sad or angry about what they're going through. The fear, sadness, and anger are my baggage. The interaction with them will be good, and a manifestation of love, the most powerful force in the universe.
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