4am, Tuesday morning. One hour late for my 3am Clindamycin, despite setting an alarm on my phone (helps to have the sound turned on!). I'll be finished taking them with this afternoon's dose, then my surgeon said to start taking the Cephlexin again, for ten days. Tomorrow is the second try at my second chemo cycle. I feel ready.
Yesterday was a great day. By the end of it, I was feeling healthy, for the first time in a month, though it seems like ages.
I wore my new wig to school, and three people commented on my hair. I felt a bit of a fake. I only wore the wig because it was cold, and I wanted the warmth over my ears and neck. The synthetic wig provides that, but it's a style that my own hair would never keep. My hair is too fine and independent.
I've been enjoying being virtually bald. I went to the Celtic Barber on Friday and had the remaining hairs gently cut back with a No.1 clipper, so that it would look more even all over. The process took about 20 minutes, even though the hair is now very thin. It feels lovely to run my hands over the short hair, and I feel liberated in being rid of the stuff that has never properly submitted to my attempts to control it. I'm even contemplating staying bald after all this is over. I would save on haircuts, and I could always have manageable and fashionable hair through the magic of wigs. Though I don't like getting compliments on something that's fake. And I was slightly irritated by the wig hair brushing my face. But even though there are websites that say bald women look hot, I also worry about choosing baldness as a long-term style. Despite what you may suspect from this blog (which is written for friends and family), I don't like drawing attention to myself. My four years in a girls' boarding school ingrained in me a strong sense of the importance of dressing well but not too conspicuously. Choosing to remain bald after my hair starts to grow back would break that rule, as would changing wigs each day. I'm not currently leaving the house without some headcovering on. I need to protect my skin from the sun, and it's been cold. Oh well, I don't get to choose for the next few months. The remaining hairs will probably hit the dust in two weeks time, and the second agent, Taxotere, is said to be even more brutal, with some people losing their eyelashes and eyebrow hair, and the regrowth taking a long time, or the hair never regaining its former glory. Wigs and hats would then become long-term options.
440am. Damn, that second Clindamycin is hurting. I'm glad I'll be off them today, I hope!
David went off for his year 5 camp today, a bit anxious about leaving, and with the option of coming back on the second day if he gets too homesick. I hope he's having a ball, and that the prospect of spending four days with his friends is more attractive than two days at home where he'll have to do homework. Nathaniel wanted to stay home for a "mummy day" yesterday, so I kept him busy with drawing, reading, and playing games in the morning. I slept in the afternoon, and he left me alone - lucky Ben was home on a sick day and they kept each other occupied. I felt good after the sleep, I needed it after doing this early morning antibiotic shift for the last few days. Three people came by with an assortment of food, which was fantastic. It gave me some social contact with dear people, and also fresh pasta for two lunches, risotto, baked potatoes, and salad to go with our meatballs for dinner, and several meals worth for our freezer. As well as some fruit and some berry muffins. I had to move some excess berries and frozen meat to the old fridge in the laundry. (I really need to start eating those berries, I have quite a stockpile. Berry smoothies coming up).
457am. God, I'm tired. One more Clindamycin to go, then back to sleep from 530 until 7. Then take Nathaniel to school, go past the post office, pick up some more Cephlexin, see the oncologist at 1030, return home, and probably collapse on the couch.
I need to start writing thank you letters to all the people who have sent me cards. I just haven't had the energy lately, but I'll see if I can do a couple a day. While Hannah's here, I'll sit with her each day and ask her about her life, so that I can fill in a book I bought for her for Christmas. It allows a grandparent to record memories about their parents, siblings, and memories. She'll be 89 in April. It's nice to write down her recollections, and I think she enjoys the chance to talk about them.
Fourteen years ago, I intended to interview all my uncles and aunts about their lives, and to record it on video. Never got around to it, especially after the kids came along. Now there are only two left on Dad's side, and all those wonderful stories are gone, or diluted in the memories of my cousins. It makes me so sad. My father doted on his family, he always used to take us around the local uncles and aunts at Easter and Christmas, and we'd always visit the cousins in Hobart, Devonport, or other places when we travelled around the state. It was so nice to have that sense of connection with family, even though we childishly resented being dragged along to old people's homes. The love that greeted us was wonderful, though it takes hindsight to realise it. I wish I could see all my aunts and uncles again, tell them how wonderful they were, how good it was to have them bring out the cordial, cakes, and biscuits when we came to visit. How unfair it is that they had to get old and die. I remember them all as gentle and loving souls, some irascible, some teasing, all fond of my dear father. I miss him so much. Part of me wants to curl up on his lap and feel safe and loved again, to go back to a time when he could do anything, solve any problem, carry me on his back and make me so tall. It was so unfair, the way he declined. And I wish I'd had the courage to visit him more, instead of avoiding visiting because it broke my heart every time.
Deep breath.
I have to live my life to the best of my abilities, out of respect and gratitude to my families who gave me life and love, and to pass their legacy to my children. I need to separate the love from the grief, and use their gift of love to strengthen me for the months ahead. I know that it's not going to be easy, and that getting through this will probably result in transformations that I can't predict.
I need to explore why I get so, so, irritated when Hannah tells me that she knows it's all going to be all right. Is it because I worry that it's not? Is it because her cheerful affirmations of a good outcome seem so blithely ignorant of what I've been through so far, of what lies ahead? Is it because it feels wrong to tempt fate by predicting the outcome? Is it because she was wrong for so many years when she told her husband he needed to eat and get strong so that he could come home from the nursing home? I feel afraid when she says it, even though I know she's trying to reassure me. I'm fine when people wish me all the best with my treatment, when they ask how I am. I just want to run a mile when I'm faced with sympathy (don't look at me with pity written all over your face! I don't need pity, I'm lucky, it could be much worse!), and I want to spin around and whizz off to another place when faced with cheerful, blithe predictions of a good outcome. I'm afraid of what could go wrong. I know it's not going to be easy, though I hope it will be better from now on. I don't know how life will be at the end of my treatment. I just need people to be with me here and now, to keep me grounded in the present moment, to distract, stimulate, encourage me. If I concentrate on the present moment, the future will look after itself.
542am. Time for sleep. Peace and love to you all. X
Monday, 25 March 2013
Saturday, 23 March 2013
Clindamycin blues
344 in the morning, the wind is swirling and whining outside. I'm propped up in bed, grey woollen wrap around my shoulders, black polar fleece tube around my neck, lilac crocheted beanie on my head. Warm and inelegant. I wish I was still asleep, dreaming of walking like Elle MacPherson (or was it Michelle Bridges?) along a windswept beach.
In 10 minutes I'll take my second Clindamycin for the morning. First, I'll take another spoon of the concoction I made to try to protect my stomach. Last night, it was tinned peaches and cream. This morning, it's yoghurt, peach juice, and cream (I ate all the peaches last night). A cloying and slightly revolting mix on top of the revolting taste this antibiotic seems to being. The first Clindamycin is simmering away in my gut, so I take another spoon of the yoghurt mix, careful not to take too much because it has to last me another two tablets.
This is the most awful medication I've ever taken. I took the first few doses (3x150mg capsules, every six hours) in one hit, only to be struck with what I thought was heartburn, but then realised was stomach pain. Incredible, sharp, pain in my stomach, not relieved by antacids, drinking milk, or taking yoghurt. My oncologist suggested I separate the tablets by 30 minutes, which has helped. Internet searches suggest staying upright for at least 30 minutes after each dose, taking them on a full stomach, and not drinking too much water. (time for the second capsule now, I've never been afraid of medicines before)
I'm on this horrible antibiotic because of the cellulitis over my seroma. You may recall my seroma had swollen and become red when I was admitted to emergency with a fever 2 Mondays ago. The swelling and redness subsided with IV antibiotics, and came back when the IV Vancomycin was withdrawn last Saturday. My surgeon put me on Cephlexin when I saw her on Tuesday, and my oncologist changed that to Clindamycin when I went in for my second round of chemo on Wednesday. It is a powerful antibiotic, used for anaerobic infections, and apparently stockpiled in the USA in case of an anthrax attack. It can cause a whole range of side effects, with diarrhea and colitis being among the most serious. I'm glad I haven't had them, yet (touch wood), but I need to be vigilant for months afterwards because there can be delayed and serious GI consequences. Just what I need, another thing to watch out for.
For best effect, I need to take the Clindamycin every six hours, including overnight, so that there is a constant level in my system. I really didn't want to wake up and take them this morning, it's such a good night for sleeping. But I thought about the prospect of missing chemo again, or being put on more powerful antibiotics (if they exist), or having to be admitted for more IV ABs, and it seemed better to take my medicine. It gives me a chance to write, and to encourage every one of you not to take your health for granted.
I know that some of you have been through far worse than me, and you won't need any encouragement. However, there may be some of you who still have that wonderful sense of invulnerability, that nothing bad will ever happen to your health. I hope that you're right. But to give yourself the best chance of coasting through life with good health, please look after yourselves. Eat healthy foods, exercise, sleep, take regular holidays, lower your stress levels, love, laugh, and do whatever suits you in terms of cultivating your spiritual side. Take a good look at your life and see if it's truly balanced. Try to achieve a better balance, and don't take risks with your health and wellbeing because your job/family/mortgage/whatever are demanding too much of your time. You need to look after yourself before you can look after others.
Sorry for the soapbox, I just hope that all of you have good health and happiness all the days of your lives. I heard similar messages, and even gave them to patients, but never thought it applied to me. I was never going to get sick. I was going to cruise through life like my great aunty Olive, living independently and happily to the age of 102, chasing off would-be burglars with my walking stick at the age of 96. Who knows, I may still get there, much wiser now than I would have been. And hopefully not affected by lymphedema, colitis, or recurrence of cancer.
Time for the third capsule, after some yoghurt. The cream seems to help coat my gut, but it's revolting. Then I need to stay upright for another 30 minutes, then risk lying down and sleeping again, but only until 9am, when I'll have to do it all again. And deal with the fatigue and intermittent dizziness that has been afflicting me since Thursday. My 89 year-old mother-in-law is coming back in the morning, staying with us for about 3 weeks over Easter. I'm not sure I can cope with another person asking me to do things for them. It's hard enough to get through the day looking after myself, and doing small things for the boys and Ben, and our elderly dog (deaf, blind, walks in circles, sleeps a lot, and prone to toileting inside if we don't catch him in time). Having to prepare lunches for Hannah (who will eat soy crisps and biscuits for lunch if I don't watch her) is going to be a challenge, when I don't know what to eat most days. Time to call in the offers of food from friends. I need microwaveable meals so that Hannah and I can have easy lunches. And I need someone to help me cook fresh food for everyone in the evening. We've been having takeaways too often lately.
Enough twaddle. It seems the yoghurt and cream has shielded my gut from the pain of those capsules. Today is the fifth day of treatment, I might be able to stop taking them tonight.
I'd hoped that this blog would be positive and upbeat throughout. Naiveté was a lovely thing. It turns out that getting treatment for breast cancer is quite unpleasant, and even a positive attitude can't prevent shit from happening. I don't like to grumble, but it's really annoying that I've racked up so many side effects (including cellulitis, which one source estimates has a 4% prevalence after mastectomy). So I will stand humbled, chastened by my delusions of immortality and robust health, and I will accept that I may have to go through a whole lot more crap before this thing is over. It's one hell of a way to have some time off from work.
In 10 minutes I'll take my second Clindamycin for the morning. First, I'll take another spoon of the concoction I made to try to protect my stomach. Last night, it was tinned peaches and cream. This morning, it's yoghurt, peach juice, and cream (I ate all the peaches last night). A cloying and slightly revolting mix on top of the revolting taste this antibiotic seems to being. The first Clindamycin is simmering away in my gut, so I take another spoon of the yoghurt mix, careful not to take too much because it has to last me another two tablets.
This is the most awful medication I've ever taken. I took the first few doses (3x150mg capsules, every six hours) in one hit, only to be struck with what I thought was heartburn, but then realised was stomach pain. Incredible, sharp, pain in my stomach, not relieved by antacids, drinking milk, or taking yoghurt. My oncologist suggested I separate the tablets by 30 minutes, which has helped. Internet searches suggest staying upright for at least 30 minutes after each dose, taking them on a full stomach, and not drinking too much water. (time for the second capsule now, I've never been afraid of medicines before)
I'm on this horrible antibiotic because of the cellulitis over my seroma. You may recall my seroma had swollen and become red when I was admitted to emergency with a fever 2 Mondays ago. The swelling and redness subsided with IV antibiotics, and came back when the IV Vancomycin was withdrawn last Saturday. My surgeon put me on Cephlexin when I saw her on Tuesday, and my oncologist changed that to Clindamycin when I went in for my second round of chemo on Wednesday. It is a powerful antibiotic, used for anaerobic infections, and apparently stockpiled in the USA in case of an anthrax attack. It can cause a whole range of side effects, with diarrhea and colitis being among the most serious. I'm glad I haven't had them, yet (touch wood), but I need to be vigilant for months afterwards because there can be delayed and serious GI consequences. Just what I need, another thing to watch out for.
For best effect, I need to take the Clindamycin every six hours, including overnight, so that there is a constant level in my system. I really didn't want to wake up and take them this morning, it's such a good night for sleeping. But I thought about the prospect of missing chemo again, or being put on more powerful antibiotics (if they exist), or having to be admitted for more IV ABs, and it seemed better to take my medicine. It gives me a chance to write, and to encourage every one of you not to take your health for granted.
I know that some of you have been through far worse than me, and you won't need any encouragement. However, there may be some of you who still have that wonderful sense of invulnerability, that nothing bad will ever happen to your health. I hope that you're right. But to give yourself the best chance of coasting through life with good health, please look after yourselves. Eat healthy foods, exercise, sleep, take regular holidays, lower your stress levels, love, laugh, and do whatever suits you in terms of cultivating your spiritual side. Take a good look at your life and see if it's truly balanced. Try to achieve a better balance, and don't take risks with your health and wellbeing because your job/family/mortgage/whatever are demanding too much of your time. You need to look after yourself before you can look after others.
Sorry for the soapbox, I just hope that all of you have good health and happiness all the days of your lives. I heard similar messages, and even gave them to patients, but never thought it applied to me. I was never going to get sick. I was going to cruise through life like my great aunty Olive, living independently and happily to the age of 102, chasing off would-be burglars with my walking stick at the age of 96. Who knows, I may still get there, much wiser now than I would have been. And hopefully not affected by lymphedema, colitis, or recurrence of cancer.
Time for the third capsule, after some yoghurt. The cream seems to help coat my gut, but it's revolting. Then I need to stay upright for another 30 minutes, then risk lying down and sleeping again, but only until 9am, when I'll have to do it all again. And deal with the fatigue and intermittent dizziness that has been afflicting me since Thursday. My 89 year-old mother-in-law is coming back in the morning, staying with us for about 3 weeks over Easter. I'm not sure I can cope with another person asking me to do things for them. It's hard enough to get through the day looking after myself, and doing small things for the boys and Ben, and our elderly dog (deaf, blind, walks in circles, sleeps a lot, and prone to toileting inside if we don't catch him in time). Having to prepare lunches for Hannah (who will eat soy crisps and biscuits for lunch if I don't watch her) is going to be a challenge, when I don't know what to eat most days. Time to call in the offers of food from friends. I need microwaveable meals so that Hannah and I can have easy lunches. And I need someone to help me cook fresh food for everyone in the evening. We've been having takeaways too often lately.
Enough twaddle. It seems the yoghurt and cream has shielded my gut from the pain of those capsules. Today is the fifth day of treatment, I might be able to stop taking them tonight.
I'd hoped that this blog would be positive and upbeat throughout. Naiveté was a lovely thing. It turns out that getting treatment for breast cancer is quite unpleasant, and even a positive attitude can't prevent shit from happening. I don't like to grumble, but it's really annoying that I've racked up so many side effects (including cellulitis, which one source estimates has a 4% prevalence after mastectomy). So I will stand humbled, chastened by my delusions of immortality and robust health, and I will accept that I may have to go through a whole lot more crap before this thing is over. It's one hell of a way to have some time off from work.
Tuesday, 19 March 2013
Chemo #2
Chemo prep: drink lots of water the day before. Result: up to bathroom at 130 and 430 in the morning. Couldn't sleep after the second one, so I emailed a friend, and finally felt sleepy at 6am. Waking up from dreams at 730 wasn't fun, but at least being hairless saves me lots of time after my shower. Tried out my new makeup from yesterday's Look Good Feel Better session. May as well try to look my best while getting chemo. (Narcissistic photos attached).
So... I arrived for my 930 chemo session a little early, ate my Bircher museli with raspberries ( Bliss!), was given 1.5litres of IV fluids along with a long-lasting anti-emetic to try to avoid the dehydration and nausea from round 1.
Fiona the chemo-nurse was all set up to give me the "red devil" (looks like raspberry cordial, turns urine pink for a couple of days, and even gave a white shirt pink underarms a couple of weeks after the first treatment). She drew back some blood, and started to slowly push the red liquid through. Then I mentioned I had been put on to cephlexin last night by my surgeon, because the area over my mastectomy scar is still red and swollen near the breastbone.
The area had swollen up prior to my admission last week, went down with IV antibiotics, and came back up again the day after they ceased the IV. Vancomycin. Two different medical officers looked at it on the weekend, and I saw my surgeon yesterday because it wasn't getting better. The skin was a little lumpy, warm to touch, and red. Someone last week said it looked cellulitic, but I didn't worry early in the week because I just didn't have the energy, and the redness went away. I did worry when it came back on Saturday, but none of the doctors seemed worried. Until today. It's apparently redder than before, and the infectious diseases consultant recommended I stop the cephlexin and start Clindamycin. And postpone chemo until next week.
Unfortunately, the new antibiotic has "a higher risk of pseudo membranous colitis from Clostridium overgrowth", so I need to take probiotics.
I'm on so many tablets now, I need to write them all down, and set alerts on my phone. It's a little amusing when well-meaning people ask if I'm taking vitamin c or other supplements. I'm finding it hard enough to keep up with the ones in on, and to exercise, eat healthy food, and rest. Adding more tablets to the mix is a little overwhelming.
Must rest now, my BP is down to 100/70 and I'm dehydrated, despite drinking 3litres of water earlier today for the chemo I never had, having the IV fluids, and 1.5 litres of hydralyte this evening. Time to veg on the couch with my boys.
So... I arrived for my 930 chemo session a little early, ate my Bircher museli with raspberries ( Bliss!), was given 1.5litres of IV fluids along with a long-lasting anti-emetic to try to avoid the dehydration and nausea from round 1.
Fiona the chemo-nurse was all set up to give me the "red devil" (looks like raspberry cordial, turns urine pink for a couple of days, and even gave a white shirt pink underarms a couple of weeks after the first treatment). She drew back some blood, and started to slowly push the red liquid through. Then I mentioned I had been put on to cephlexin last night by my surgeon, because the area over my mastectomy scar is still red and swollen near the breastbone.
The area had swollen up prior to my admission last week, went down with IV antibiotics, and came back up again the day after they ceased the IV. Vancomycin. Two different medical officers looked at it on the weekend, and I saw my surgeon yesterday because it wasn't getting better. The skin was a little lumpy, warm to touch, and red. Someone last week said it looked cellulitic, but I didn't worry early in the week because I just didn't have the energy, and the redness went away. I did worry when it came back on Saturday, but none of the doctors seemed worried. Until today. It's apparently redder than before, and the infectious diseases consultant recommended I stop the cephlexin and start Clindamycin. And postpone chemo until next week.
Unfortunately, the new antibiotic has "a higher risk of pseudo membranous colitis from Clostridium overgrowth", so I need to take probiotics.
I'm on so many tablets now, I need to write them all down, and set alerts on my phone. It's a little amusing when well-meaning people ask if I'm taking vitamin c or other supplements. I'm finding it hard enough to keep up with the ones in on, and to exercise, eat healthy food, and rest. Adding more tablets to the mix is a little overwhelming.
Must rest now, my BP is down to 100/70 and I'm dehydrated, despite drinking 3litres of water earlier today for the chemo I never had, having the IV fluids, and 1.5 litres of hydralyte this evening. Time to veg on the couch with my boys.
Sunday, 17 March 2013
A new day
Monday morning, waiting to see my oncologist. Feeling very tired, I'll be heading home as soon as this appointment is over to get some sleep. Then there's a physio appointment at 2. Need to get to the barber's as well, to see if a professional can transform what looks like a moth-eaten possum pelt into something more attractive. So glad I have some hats to wear, wigs are a little scratchy, and my scalp is tender - the sighing of my follicles as they slowly give up their locks.
Saturday night's grief and guilt has been replaced with a sense of sadness and acceptance. No point in berating myself for all the things I haven't done, should have done, could have done, wish I'd done. I've done the best I could in every situation, and learnt from my mistakes (mostly), so it's onward and upward from here. Even if the next six months are going to be difficult, I'll get through them.
Photos show me with my favourite new hat over top of wig the day before I became febrile; short-haired but not moth-eaten in hospital yesterday; with new wig trying to look elegant; and my beautiful boys last Tuesday. At least my white cells are back up and I can hug them again.
Saturday night's grief and guilt has been replaced with a sense of sadness and acceptance. No point in berating myself for all the things I haven't done, should have done, could have done, wish I'd done. I've done the best I could in every situation, and learnt from my mistakes (mostly), so it's onward and upward from here. Even if the next six months are going to be difficult, I'll get through them.
Photos show me with my favourite new hat over top of wig the day before I became febrile; short-haired but not moth-eaten in hospital yesterday; with new wig trying to look elegant; and my beautiful boys last Tuesday. At least my white cells are back up and I can hug them again.
Friday, 15 March 2013
An idle mind...
Friday March 15th. My fifth night in hospital. I'm feeling better physically, worse emotionally.
The boys have been crying for me in their sleep. I hugged them properly for the first time today, after avoiding body contact all week for fear of getting a new infection. I just needed to cuddle them, bugs be damned. My neutrophils were up to 1.2 today, so I'm getting better at resisting infection, I hope. Getting worse at distracting myself from the totally crapful situation I'm in.
That's always been the problem with spending too much time alone and idle. Too much time for thinking about all the things I wanted to do this year, all the things I would be doing if my blasted milk ducts hadn't turned feral. I'm feeling guilty that I had to drop my role as national and state chair of our college on other people, without giving a proper handover. I wanted to achieve so much this year. I only had until our October conference left as national chair, and I haven't had the energy to share those ideas with my deputy or the rest of the committee. I know, I know, I can call them up and let them know, and I will, but I feel like I've abandoned them, as I do with work.
Okay, all my CBT - oriented friends, and others, will be seeing how irrational and self-defeating it is to feel guilty over having to step down from professional responsibilities when faced with my diagnosis and treatment needs. I see it too. But it doesn't stop the tears from rolling down my face and it doesn't make me feel any better to know it's irrational and self-punitive. I just feel like I've let people down who were depending on me, and I hate doing that. And I'd far rather be in a reality where there had been no cancer, where I'd be continuing on with what I was doing, which was trying to get a balance between my family and professional life.
Is this meant to be a wake-up call that I was neglecting my family and focussing too much on neuropsychology? I don't think so. I love my family so much, we've been through so many difficult times the past 11years, I needed to take some time out to focus on something different. The stress of caring for aging parents, fathers dying slowly in nursing homes, while trying to bring up two beautiful boys... I had to escape from it some times, neuropsychology was a way of trying to help other people, because I couldn't stop my father, or Ben's father, from declining. Then Dad died last year and I found it hard to write my reports. It felt futile, knowing that I couldn't save anyone. Irrational again, I know. I enjoyed seeing patients, but the reports were just so hard to finish.
And I feel like I've failed my children, they've had a lousy childhood, with their parents preoccupied with work and unwell grandparents. I've often taken the path of least resistance with them because I haven't had the energy to argue with them, and then Ben and I have argued about their behavior. They're great kids, I love them so much, and I feel so bad that I'm not at home with them. But I don't feel well enough to go home yet. I'm still so tired during the day, I don't know if I could prepare meals for them, or cope with their demands.
Well, now I've told you how I feel. I think this is the lowest I've felt since I was diagnosed. Afraid, stupid, scared about my future treatments. I'm not posting this to get sympathy. Please, God, not sympathy. Love, prayers, kindness. For me and for everyone else who is going through difficult times, some much, much worse than mine. That's what I want from you. Universal love and kindness. That would be worth it.
I think I'll just go to sleep now to the ache of my hair follicles dying, a slow, dull pain across the top of my head as my cells give up their hair. There will be another two handfuls of hair in the shower in the morning.
Tonight, I'll think about all the things that make me happy, all the things to look forward to, all the things to appreciate and be grateful for. There are so many.
I will pack my guilt and fears and regrets into balloons and watch them fly into the sunset, only to be hit by rockets and explode into fireworks.
Tomorrow is a new day, and it will be wonderful.
The boys have been crying for me in their sleep. I hugged them properly for the first time today, after avoiding body contact all week for fear of getting a new infection. I just needed to cuddle them, bugs be damned. My neutrophils were up to 1.2 today, so I'm getting better at resisting infection, I hope. Getting worse at distracting myself from the totally crapful situation I'm in.
That's always been the problem with spending too much time alone and idle. Too much time for thinking about all the things I wanted to do this year, all the things I would be doing if my blasted milk ducts hadn't turned feral. I'm feeling guilty that I had to drop my role as national and state chair of our college on other people, without giving a proper handover. I wanted to achieve so much this year. I only had until our October conference left as national chair, and I haven't had the energy to share those ideas with my deputy or the rest of the committee. I know, I know, I can call them up and let them know, and I will, but I feel like I've abandoned them, as I do with work.
Okay, all my CBT - oriented friends, and others, will be seeing how irrational and self-defeating it is to feel guilty over having to step down from professional responsibilities when faced with my diagnosis and treatment needs. I see it too. But it doesn't stop the tears from rolling down my face and it doesn't make me feel any better to know it's irrational and self-punitive. I just feel like I've let people down who were depending on me, and I hate doing that. And I'd far rather be in a reality where there had been no cancer, where I'd be continuing on with what I was doing, which was trying to get a balance between my family and professional life.
Is this meant to be a wake-up call that I was neglecting my family and focussing too much on neuropsychology? I don't think so. I love my family so much, we've been through so many difficult times the past 11years, I needed to take some time out to focus on something different. The stress of caring for aging parents, fathers dying slowly in nursing homes, while trying to bring up two beautiful boys... I had to escape from it some times, neuropsychology was a way of trying to help other people, because I couldn't stop my father, or Ben's father, from declining. Then Dad died last year and I found it hard to write my reports. It felt futile, knowing that I couldn't save anyone. Irrational again, I know. I enjoyed seeing patients, but the reports were just so hard to finish.
And I feel like I've failed my children, they've had a lousy childhood, with their parents preoccupied with work and unwell grandparents. I've often taken the path of least resistance with them because I haven't had the energy to argue with them, and then Ben and I have argued about their behavior. They're great kids, I love them so much, and I feel so bad that I'm not at home with them. But I don't feel well enough to go home yet. I'm still so tired during the day, I don't know if I could prepare meals for them, or cope with their demands.
Well, now I've told you how I feel. I think this is the lowest I've felt since I was diagnosed. Afraid, stupid, scared about my future treatments. I'm not posting this to get sympathy. Please, God, not sympathy. Love, prayers, kindness. For me and for everyone else who is going through difficult times, some much, much worse than mine. That's what I want from you. Universal love and kindness. That would be worth it.
I think I'll just go to sleep now to the ache of my hair follicles dying, a slow, dull pain across the top of my head as my cells give up their hair. There will be another two handfuls of hair in the shower in the morning.
Tonight, I'll think about all the things that make me happy, all the things to look forward to, all the things to appreciate and be grateful for. There are so many.
I will pack my guilt and fears and regrets into balloons and watch them fly into the sunset, only to be hit by rockets and explode into fireworks.
Tomorrow is a new day, and it will be wonderful.
Thursday, 14 March 2013
Intuition and diagnosis
3am on the oncology ward. I'm in pain and feeling mightily peeved.
Woke up feeling hot and sweaty, and my sinus pain back with a concentrated vengeance. Pain 7-8/10 (vs 1-2/10 yesterday), and concentrated behind my right eye. A deep, sharp pain that lessens slightly when I clear my post-nasal congestion (resulting in revoting sound and equally revolting postnasal drip). Although the pain isn't spread across my forehead like it was yesterday, it's concentrated on a single spot and seems to extend to the back of my head. Or maybe my neck is just stiff from holding my head funny?
The bones above and below my eyes aren't sore to touch, unless I press very hard, so I've had doctors asking me all week how I know it's sinus pain. I just know, I say, I've been having recurrent sinusitis since 1994, when my allergic rhinitis decided to stop displaying itself as a nose-abrading display of sneezing and running, and to retreat to my sinuses. I've learnt to avoid it with a daily antihistamine. If I forget to take my antihistamine, I get symptoms in a day or two, and try to suppress them by nasal irrigation (fess make a sachet that gives a solution of buffered saline with xylitol), and sudofed. If the symptoms don't resolve, I need to take antibiotics. Otherwise I end up lying in bed with the blinds drawn, not wanting to move my head, feeling fatigued and easily irritated. I've wasted weeks of my life with this bloody condition. I know my own body.
So I'm peeved because I wasn't assertive enough when I saw my doctor last week. He seemed dubious about my prediction that I was getting sinusitis, and said that taking an antibiotic for it might mask a more serious infection. I left with a script for amoxicillin, promising only to take it if I developed a full-blown sinus headache. Not remembering that the playing field has changed, that I was neutropenic. I'm not annoyed with my doctor, I'm annoyed with myself for not being assertive about what I know about my own body.
My fatigue and need for sleep on the weekend were associated with the tell-tale buildup of congestion in my sinuses. I was taking Sudafed to reduce the symptoms. The first symptoms after the fever and shaking in DEM were rapid onset of sinus headache, earache, and sore throat. The seroma inflammation and redness might have been a red herring. The seroma fluid didn't grow a culture, and my surgeon thought it was probably a sympathetic reaction to the underlying infection. The sinus headache has been bothering me all week. It only started to resolve properly yesterday when they let me take Sudafed. I haven't been able to provide a sample of the postnasal discharge because it's postnasal. No runny nose, no sneezing. It hurts my head to cough, and there's not enough postnasal discharge to cough up anyway.
So I'm going to ask the lovely, thorough, registrar who suggested a sinus CT and ENT referral to arrange them for me. I've been doing my reading (e.g. http://allergies.about.com/od/noseandsinusallergies/a/sinusitis.htm), and while I don't want to undergo surgery to improve drainage while I'm having chemo, I would be willing to try steroidal and non steroidal sprays to reduce inflammation and discharge. I'll also ask if I could have some amoxicillin, or something, for the current infection. I know they've been hitting me with heavy-duty antibiotics targeted at the cultures that came back, but my sinusitis usually dissipates a day or two after starting antibiotics. And this thing is so frigging painful, I get stabs of pain that go up to a 9/10. Must turn light off, take my 0.5 mg of lorazepam, and get some sleep. Grrrr.
Woke up feeling hot and sweaty, and my sinus pain back with a concentrated vengeance. Pain 7-8/10 (vs 1-2/10 yesterday), and concentrated behind my right eye. A deep, sharp pain that lessens slightly when I clear my post-nasal congestion (resulting in revoting sound and equally revolting postnasal drip). Although the pain isn't spread across my forehead like it was yesterday, it's concentrated on a single spot and seems to extend to the back of my head. Or maybe my neck is just stiff from holding my head funny?
The bones above and below my eyes aren't sore to touch, unless I press very hard, so I've had doctors asking me all week how I know it's sinus pain. I just know, I say, I've been having recurrent sinusitis since 1994, when my allergic rhinitis decided to stop displaying itself as a nose-abrading display of sneezing and running, and to retreat to my sinuses. I've learnt to avoid it with a daily antihistamine. If I forget to take my antihistamine, I get symptoms in a day or two, and try to suppress them by nasal irrigation (fess make a sachet that gives a solution of buffered saline with xylitol), and sudofed. If the symptoms don't resolve, I need to take antibiotics. Otherwise I end up lying in bed with the blinds drawn, not wanting to move my head, feeling fatigued and easily irritated. I've wasted weeks of my life with this bloody condition. I know my own body.
So I'm peeved because I wasn't assertive enough when I saw my doctor last week. He seemed dubious about my prediction that I was getting sinusitis, and said that taking an antibiotic for it might mask a more serious infection. I left with a script for amoxicillin, promising only to take it if I developed a full-blown sinus headache. Not remembering that the playing field has changed, that I was neutropenic. I'm not annoyed with my doctor, I'm annoyed with myself for not being assertive about what I know about my own body.
My fatigue and need for sleep on the weekend were associated with the tell-tale buildup of congestion in my sinuses. I was taking Sudafed to reduce the symptoms. The first symptoms after the fever and shaking in DEM were rapid onset of sinus headache, earache, and sore throat. The seroma inflammation and redness might have been a red herring. The seroma fluid didn't grow a culture, and my surgeon thought it was probably a sympathetic reaction to the underlying infection. The sinus headache has been bothering me all week. It only started to resolve properly yesterday when they let me take Sudafed. I haven't been able to provide a sample of the postnasal discharge because it's postnasal. No runny nose, no sneezing. It hurts my head to cough, and there's not enough postnasal discharge to cough up anyway.
So I'm going to ask the lovely, thorough, registrar who suggested a sinus CT and ENT referral to arrange them for me. I've been doing my reading (e.g. http://allergies.about.com/od/noseandsinusallergies/a/sinusitis.htm), and while I don't want to undergo surgery to improve drainage while I'm having chemo, I would be willing to try steroidal and non steroidal sprays to reduce inflammation and discharge. I'll also ask if I could have some amoxicillin, or something, for the current infection. I know they've been hitting me with heavy-duty antibiotics targeted at the cultures that came back, but my sinusitis usually dissipates a day or two after starting antibiotics. And this thing is so frigging painful, I get stabs of pain that go up to a 9/10. Must turn light off, take my 0.5 mg of lorazepam, and get some sleep. Grrrr.
Wednesday, 13 March 2013
On being a patient
1030pm, 28/4/2013
The worst thing about staying in hospital overnight is hearing the moans and tears of other patients, and not being able to jump up and help them. The best I can do (while receiving these IV antibiotics) is to call the nurse and make sure they're looking after the old dear who is in pain across the corridor. And to shut the door, so I can't hear her.
It's very hard to suppress the urge to help others and to focus on looking after myself.
Being in the patient role makes me feel much more vulnerable. Is it because of all the times I've reassured patients that we're doing our best to help them, while knowing that their situation is grim?
The thing that kept me going as a clinician was the hope that everything would work out in the end. I have to maintain that hope as I go through this.
While I'm here, I'll include something I wrote on the third day of my last hospital admission, when I was feeling very unwell, and hadn't had the benefit of being allowed home on day leave (I slept blissfully in my own bed for four hours this afternoon. Heaven!). I'm feeling ok this time, though tired, and I now have "tissuing" to add to my list of side-effects (it's when there's a bit of leakage from the cannula into the surrounding tissue. Ouch!) I've just been informed that my next Tazocin is due at 3am, so it's goodnight from me.
14/3/13
Day three in hospital, and I want to go home!!!!
I have a new and enormous empathy for people who have to stay in hospital for a prolonged time, where the discharge is dependent on factors not entirely under their control. My past hospital admissions have been for childbirth, where I was so high on endorphins I didn't mind where I was, and for the mastectomy, where there was a clearly defined discharge date. This time, I'm stuck until my white blood cell count rises to 1.0 (it was 0.1 on Tuesday, 0.2 yesterday), at which stage I can be sent home on oral antibiotics. Until then, it's IV ABs and regular observations and daily blood tests and hospital food.
I can't complain about the care I'm getting, the nurses are lovely, the doctors are kind and listen to me, the ward is quiet. I obviously need the rest and care, and this is the best place for me to be. The food is bland and unappealing - I wonder if the kitchen does it to encourage people to leave, or is it just my chemo making me a fussy eater? I'm glad for family and friends who can bring me tastier options from the cafeteria or home. The problem is, I feel trapped, and I suddenly understand how awful it must be for all those patients who are in here for months on end. Especially for the ones who are well enough to go home, but whose discharge is held up by the need to find accommodation, or to determine if they have the capacity to choose their discharge destination.
Some things I've learnt as a patient that all healthcare workers should know:
1. If a patient has been told you're going to see them, go and see them that day, even if it's only for a couple of minutes to introduce yourself and to say when you're going to see them again. Patients don't have much to do, and it's hard to relax if you're constantly waiting for someone to come and see you.
2. It would be good if there was some way of indicating that your use of the nurse call bell had been heard. You don't want to be a nuisance by buzzing too much, but sometimes it takes so long for them to come, you start to worry that they have all disappeared (silly, I know, of course they're with other patients, but it's just how your mind works)
3. Conversations at the nurses station and in hallways are very easily overheard, especially by people bored out of their wits and listening for the presence of their doctors on the wards
4. Nurses can make such a difference to your experience as a patient. Their kindness, willingness to engage in conversation, and sense of humor help enormously. There is a huge contrast between the nursing care I've had here (they've all been wonderful) and the stressed-out nurse who increased my anxiety after having David, or the one who was in such a hurry to get me out of the day procedure unit last year. As a patient, you can tell if someone is truly listening to you, or if they're just going through the motions while their mind is on other things. When you're feeling unwell, the latter approach just makes you feel more vulnerable, and less able to ask for what you need (you don't want to be more of a nuisance than you've been already)
The worst thing about staying in hospital overnight is hearing the moans and tears of other patients, and not being able to jump up and help them. The best I can do (while receiving these IV antibiotics) is to call the nurse and make sure they're looking after the old dear who is in pain across the corridor. And to shut the door, so I can't hear her.
It's very hard to suppress the urge to help others and to focus on looking after myself.
Being in the patient role makes me feel much more vulnerable. Is it because of all the times I've reassured patients that we're doing our best to help them, while knowing that their situation is grim?
The thing that kept me going as a clinician was the hope that everything would work out in the end. I have to maintain that hope as I go through this.
While I'm here, I'll include something I wrote on the third day of my last hospital admission, when I was feeling very unwell, and hadn't had the benefit of being allowed home on day leave (I slept blissfully in my own bed for four hours this afternoon. Heaven!). I'm feeling ok this time, though tired, and I now have "tissuing" to add to my list of side-effects (it's when there's a bit of leakage from the cannula into the surrounding tissue. Ouch!) I've just been informed that my next Tazocin is due at 3am, so it's goodnight from me.
14/3/13
Day three in hospital, and I want to go home!!!!
I have a new and enormous empathy for people who have to stay in hospital for a prolonged time, where the discharge is dependent on factors not entirely under their control. My past hospital admissions have been for childbirth, where I was so high on endorphins I didn't mind where I was, and for the mastectomy, where there was a clearly defined discharge date. This time, I'm stuck until my white blood cell count rises to 1.0 (it was 0.1 on Tuesday, 0.2 yesterday), at which stage I can be sent home on oral antibiotics. Until then, it's IV ABs and regular observations and daily blood tests and hospital food.
I can't complain about the care I'm getting, the nurses are lovely, the doctors are kind and listen to me, the ward is quiet. I obviously need the rest and care, and this is the best place for me to be. The food is bland and unappealing - I wonder if the kitchen does it to encourage people to leave, or is it just my chemo making me a fussy eater? I'm glad for family and friends who can bring me tastier options from the cafeteria or home. The problem is, I feel trapped, and I suddenly understand how awful it must be for all those patients who are in here for months on end. Especially for the ones who are well enough to go home, but whose discharge is held up by the need to find accommodation, or to determine if they have the capacity to choose their discharge destination.
Some things I've learnt as a patient that all healthcare workers should know:
1. If a patient has been told you're going to see them, go and see them that day, even if it's only for a couple of minutes to introduce yourself and to say when you're going to see them again. Patients don't have much to do, and it's hard to relax if you're constantly waiting for someone to come and see you.
2. It would be good if there was some way of indicating that your use of the nurse call bell had been heard. You don't want to be a nuisance by buzzing too much, but sometimes it takes so long for them to come, you start to worry that they have all disappeared (silly, I know, of course they're with other patients, but it's just how your mind works)
3. Conversations at the nurses station and in hallways are very easily overheard, especially by people bored out of their wits and listening for the presence of their doctors on the wards
4. Nurses can make such a difference to your experience as a patient. Their kindness, willingness to engage in conversation, and sense of humor help enormously. There is a huge contrast between the nursing care I've had here (they've all been wonderful) and the stressed-out nurse who increased my anxiety after having David, or the one who was in such a hurry to get me out of the day procedure unit last year. As a patient, you can tell if someone is truly listening to you, or if they're just going through the motions while their mind is on other things. When you're feeling unwell, the latter approach just makes you feel more vulnerable, and less able to ask for what you need (you don't want to be more of a nuisance than you've been already)
Tuesday, 12 March 2013
Fever
I'm writing from the oncology ward at Launceston General Hospital, 23 hours after I came here with a fever. I've been on IV antibiotics, and will be in here for 3 or 4 days until my white cells rise enough for me to go home on oral antibiotics.
I was tired on the weekend, which I attributed to staying up past midnight on friday reading the latest Phryne Fisher novel. It's frivolous and entertaining, and I've always found it hard to put down a good book. I only wish the ABC would make a range of clothes, hats, accesories and shoes available based on the tv series. I lust after her wardrobe very badly.
I went for a half-hour walk with David on Saturday, he wanted to see how long it would take to walk to his school - we made it as far as City Park, where Ben and Nathaniel picked us up. School would probably be another 15-20 minutes - it would make us very fit to walk there each day, but I was pooped. Walking down steep hills uses muscles that aren't often challenged :) I slept solidly for a couple of hours on Saturday afternoon, with a visit from a dear friend who lives in Hobart, and I slept well again from 1030 to 530 on saturday night. David had a birthday party on Saturday, and came home tired and grumpy, complaining of a sore throat. He came and slept with me around 2 am, as he often does. I've never been great at sending him back to his bed, and I was so tired I just hoped I wouldn't catch anything from him.
Sunday morning was spent taking a walk with a friend from work, who had breast cancer 4 years ago. She told me that it's not advised to shave your head when the hair starts falling out, as the follicles aren't pushing new hair through, and the hair can get stuck under the skin. The thought of a scalp with ingrown hairs doesn't appeal to me, so I'll just get it clipped really short when it starts to fall out.
I slept for 2 or 3 hours on Sunday afternoon, and still felt tired, but I get so hungry, I needed to get up and cook dinner. The boys, who were really well-behaved all weekend, were very noisy and boisterous. I feel sad that they have missed out on going to the beach and having much outdoor fun this summer. They're happy to play inside, but they have so much energy to burn, I need them to get tired. I'll see if I can arrange for them to spend time with their friends each weekend. I don't have the energy to take them out, and Ben always seems to have work to do when he's at home. Anyway, the noise got a little too much in the house, so I took Ginny for a walk in the park, enjoying the rainbow and the smattering of rain that started to fall. Back at home I felt a bit hot. Our Braun ear thermometer said 38.2, 38.4, 37.6. It's so unreliable, seems to give a 0.6 range in measures from one person. Our other thermometer said my temperature was 37.5, +/- 0.1. Then I stood up to take the boys to bed at 830, and started shivering, even though I felt hot. I called my oncologist, who said I should go to emergency.
The thermometer at the triage desk said my temp was 37.1, but inside emergency it was 38.7. I felt awful - shivery, hot and cold, achy all over. My throat was sore, I was getting an earache, and my sinuses started to fill up. It took 1.5 hours before they started the IV antibiotics, the poor boys were falling asleep on the floor in my cubicle, and asking if they could stay home tomorrow.
I had a pretty lousy night. My temperature got up to 39.2, my blood pressure dropped as low as 86/53, and has been up and down all day. It goes up when I get IV fluids, then down again when the fluids stop. I feel drained and dizzy when it's low, though I've been okay to walk to the bathroom (the fluids seem to go straight to my bladder). I remember my BP dropping as low as 50 over something when I was having my kids, I think because I'd had epidurals for both. It's a strange feeling, you lack the energy to be worried about having such a low BP, though you know it's not good. I finally managed to sleep around 330 am, I was afraid to go to sleep for a while, my breathing was shallow and i was afraid that I'd die if i went to sleep (totally irrational, but very real). I also found it hard to sleep because I was waiting for the medical consultant to see me, as promised. I'm not sure if he did come, or if I dreamt that he did. I remember someone coming and saying they had read my file and didn't need to examine me, saying that I wouldn't be able to pronounce his name, so I looked at his name badge and asked if Sukhdeep was pronounced a little like Sundeep. I guess it must have happened, but it felt like a dream.
My surgeon drained my seroma this morning, 200ml of clear fluid. It had swollen up yesterday and was red and painful last night, this became less with the antibiotics. They took a sample from my seroma, and have done blood cultures and tested me for MRSA, giving me some vancomycin just in case. One of the lovely old physicians here speculates that most of the staff probably have MRSA, so it will be interesting to see if I do. I hope not! I don't need it. I'm still neutropenic, and my liver functions are a little "deranged", possibly due to the chemo. I might need to have a liver ultrasound and sinus CT if they don't improve. What joy! At least it won't involve more injections, I'm beginning to feel like a pin cushion, and they can't access all the lovely veins on my left side because of the risk of lymphedema. The back of my hand is tender from being cannulated twice in a week, and I'm finding needles quite painful. They've accessed my infusaport now, and it's not uncomfortable, after an initial stinging sensation when they needled it.
It's now 845, my temperature has dropped below 38, my bp is better, and I'm getting tired again. It was lovely to see my boys for a brief visit tonight. They didn't like wearing masks and not being able to hug me, and I really wanted to hug them. We just had to satisfied with holding hands. I miss them so much, I wish I wasn't sick, I hate being away from them. But I know this is the best place to be, and they'll cope without me. And hopefully I'll sail through the rest of my treatment. Though I now know why some people refuse to persist with chemotherapy.
I was tired on the weekend, which I attributed to staying up past midnight on friday reading the latest Phryne Fisher novel. It's frivolous and entertaining, and I've always found it hard to put down a good book. I only wish the ABC would make a range of clothes, hats, accesories and shoes available based on the tv series. I lust after her wardrobe very badly.
I went for a half-hour walk with David on Saturday, he wanted to see how long it would take to walk to his school - we made it as far as City Park, where Ben and Nathaniel picked us up. School would probably be another 15-20 minutes - it would make us very fit to walk there each day, but I was pooped. Walking down steep hills uses muscles that aren't often challenged :) I slept solidly for a couple of hours on Saturday afternoon, with a visit from a dear friend who lives in Hobart, and I slept well again from 1030 to 530 on saturday night. David had a birthday party on Saturday, and came home tired and grumpy, complaining of a sore throat. He came and slept with me around 2 am, as he often does. I've never been great at sending him back to his bed, and I was so tired I just hoped I wouldn't catch anything from him.
Sunday morning was spent taking a walk with a friend from work, who had breast cancer 4 years ago. She told me that it's not advised to shave your head when the hair starts falling out, as the follicles aren't pushing new hair through, and the hair can get stuck under the skin. The thought of a scalp with ingrown hairs doesn't appeal to me, so I'll just get it clipped really short when it starts to fall out.
I slept for 2 or 3 hours on Sunday afternoon, and still felt tired, but I get so hungry, I needed to get up and cook dinner. The boys, who were really well-behaved all weekend, were very noisy and boisterous. I feel sad that they have missed out on going to the beach and having much outdoor fun this summer. They're happy to play inside, but they have so much energy to burn, I need them to get tired. I'll see if I can arrange for them to spend time with their friends each weekend. I don't have the energy to take them out, and Ben always seems to have work to do when he's at home. Anyway, the noise got a little too much in the house, so I took Ginny for a walk in the park, enjoying the rainbow and the smattering of rain that started to fall. Back at home I felt a bit hot. Our Braun ear thermometer said 38.2, 38.4, 37.6. It's so unreliable, seems to give a 0.6 range in measures from one person. Our other thermometer said my temperature was 37.5, +/- 0.1. Then I stood up to take the boys to bed at 830, and started shivering, even though I felt hot. I called my oncologist, who said I should go to emergency.
The thermometer at the triage desk said my temp was 37.1, but inside emergency it was 38.7. I felt awful - shivery, hot and cold, achy all over. My throat was sore, I was getting an earache, and my sinuses started to fill up. It took 1.5 hours before they started the IV antibiotics, the poor boys were falling asleep on the floor in my cubicle, and asking if they could stay home tomorrow.
I had a pretty lousy night. My temperature got up to 39.2, my blood pressure dropped as low as 86/53, and has been up and down all day. It goes up when I get IV fluids, then down again when the fluids stop. I feel drained and dizzy when it's low, though I've been okay to walk to the bathroom (the fluids seem to go straight to my bladder). I remember my BP dropping as low as 50 over something when I was having my kids, I think because I'd had epidurals for both. It's a strange feeling, you lack the energy to be worried about having such a low BP, though you know it's not good. I finally managed to sleep around 330 am, I was afraid to go to sleep for a while, my breathing was shallow and i was afraid that I'd die if i went to sleep (totally irrational, but very real). I also found it hard to sleep because I was waiting for the medical consultant to see me, as promised. I'm not sure if he did come, or if I dreamt that he did. I remember someone coming and saying they had read my file and didn't need to examine me, saying that I wouldn't be able to pronounce his name, so I looked at his name badge and asked if Sukhdeep was pronounced a little like Sundeep. I guess it must have happened, but it felt like a dream.
My surgeon drained my seroma this morning, 200ml of clear fluid. It had swollen up yesterday and was red and painful last night, this became less with the antibiotics. They took a sample from my seroma, and have done blood cultures and tested me for MRSA, giving me some vancomycin just in case. One of the lovely old physicians here speculates that most of the staff probably have MRSA, so it will be interesting to see if I do. I hope not! I don't need it. I'm still neutropenic, and my liver functions are a little "deranged", possibly due to the chemo. I might need to have a liver ultrasound and sinus CT if they don't improve. What joy! At least it won't involve more injections, I'm beginning to feel like a pin cushion, and they can't access all the lovely veins on my left side because of the risk of lymphedema. The back of my hand is tender from being cannulated twice in a week, and I'm finding needles quite painful. They've accessed my infusaport now, and it's not uncomfortable, after an initial stinging sensation when they needled it.
It's now 845, my temperature has dropped below 38, my bp is better, and I'm getting tired again. It was lovely to see my boys for a brief visit tonight. They didn't like wearing masks and not being able to hug me, and I really wanted to hug them. We just had to satisfied with holding hands. I miss them so much, I wish I wasn't sick, I hate being away from them. But I know this is the best place to be, and they'll cope without me. And hopefully I'll sail through the rest of my treatment. Though I now know why some people refuse to persist with chemotherapy.
Friday, 8 March 2013
Week two. The nadir
The nadir. Sounds dramatic. I was told I'd probably spend all of day 8 (Wednesday) in bed, and that I'd feel pretty bad for the days after that. I'm glad the predictions were wrong! I saw the oncologist on Friday, and the blood results showed that I'm officially neutropenic (neutrophils 0.3, which is better than 0.0, but the lower end of the normal range is 2.0). He did the nadir blood test to confirm the expected effects of chemo on my white cells, and to help plan for the next chemo cycle, which is due to start on the 20th. Being neutropenic means that I have to be very careful to avoid infection, and I have to go to hospital immediately if I get a fever over 37.9, as there's a risk of septic shock, which sounds scary enough for me to not want to know anything more about it. Chemo patients get taken immediately into a separate part of our emergency department, to avoid the risk of infection from other patients. To help support my body in the next cycle, I'll be given an injection of something to boost my white cell production on the day after chemo. The most likely side effect of this will be pain in my bones, for which I will need narcotics (great! Just what I need! Another reason to feel tired), but a serious side effect is a ruptured spleen. I don't want to add that to my side effects tally.
My surgeon told me I'd experienced nearly every side effect when I saw her on Tuesday (200ml from the seroma, it's slowing down!), and I imagined a row of little badges, one for each side effect - seroma, axillary web syndrome (aka cording), nausea, dehydration, dry mouth, oral thrush, gut disturbance, constipation, diarrhea, bone pain, fatigue, excessive sedation with some painkillers...
Hair loss is due to start in the next week, but I'm prepared. I have found some elastics to tie it into pony tails, and I'll get Ben and the boys to cut them off for me. Then Ben can use his Wahl hair clippers to make it even, and if my scalp is not too sensitive, I'll get him to shave my head. Then I'll pack my hair into a ziplock bag, singing 'nothing compares 2u', and start my new life as a skinhead. Or a Buddhist nun.
I have 6 hats and 2 wigs to choose from (one long, dark, and natural hair, loaned by a dear friend, the other shorter and synthetic, more my hair colour). People say you feel the cold on your head at night, so I'll be wearing a beanie to keep warm in bed, not that I should need it while this heatwave continues. We've moved to the downstairs bedrooms because it's just too hot upstairs to sleep, though unlike Melbourne, where the nightly minimum is only 20, it gets to a nice cool 12-14 overnight in Launceston. Median property prices are pretty good too, if you'd like to move down here. We need healthcare workers, and lots of workers under 65, though finding work can be difficult for some.
Launceston is a lovely place, with lovely people. It's so touching to have friends of friends, or old classmates, offering to help. I've even made a new friend in the last couple of weeks, a delightful woman who I'd only met once before, and who is wonderful to spend time with. There's a generosity of spirit in the people here that I never experienced in the community where I lived in melbourne, but maybe it's because I'm home, that I'm one of them, and that I never had that depth of contacts and belonging in melbourne (even though I have some absolutely marvelous friends there). I think the less stressful pace of life here also helps foster a sense of community, and a willingness to help other people. Everyone is only 5-20 minutes away, we don't spend hours commuting each week, there's more time to spend with other people. I'm so glad I came home.
So It's been a pretty good week. I had a long talk with a genetic counsellor, who thinks there is a very low chance of me having a BRCA gene, so my ovaries look safe for now. I found I had enough energy each morning to go for a walk (Ginny is very happy about that), and then to potter around in the kitchen making breakfast and my vege juice. Surprising how long it takes to do such simple things, though it's interspersed with attempts to tidy up the kitchen and family area. I saw a condition on Facebook described as "housework distractibility disorder," where you start one task, get distracted by another, then another, and at the end of it have very little complete. Luckily, doing this each day has resulted in the kitchen and family area being reasonably tidy. I even found the energy to move some small tables around so that the furniture in the family area looks quite good. Eclectic, but I'm happy with it. One troublesome room down, three more to go.
So, my routine for the last week was: get up with the boys around 630 (wow! Regular awake time does improve sleep hygiene); get their food ready; encourage them to pack their own bags; shower (doing lots of conditioning to make my wig donation as lustrous as possible); breakfast with pottering around; walk for 30 minutes (preferably with a friend); talk to visiting friend about renovation ideas; start to feel tired at 1030, but also ravenous; cook and eat eggs or some other protein; lie on the couch and watch abc iView (Shakespeare, ages of Britain, Doctor Blake mysteries, miss Fisher's murder mysteries (I lust after her clothes), the pre-raphaelite brotherhood). Lovely to watch grownup tv uninterrupted.
I haven't felt like sleeping during the day, just needing to lie down, drink water, and eat lots of protein. I turned into Mumzilla around 5pm on the one day when I hadn't had enough protein - I felt achey and ravenously hungry, and although I knew I needed to lie down, I needed to eat more. This meant cooking dinner (chicken sausages and veges), and getting very irritated with two boys who had not unpacked their school bags, and who complained at everything I asked them to do. I feel bad for getting so cross with them, but I felt like utter crap, I needed to eat and rest, and in drawing up a list of chores for them to do, I have realized how much I've been doing for them because it's been easier than fighting about it. I don't have the energy to do so many things for them, and it will be better for all of us if they start pulling their weight and getting into some good routines. Avoiding conflict has led to some problematic behaviours and attitudes. Luckily, setting clear routines and expectations is seeing those behaviours resolve.
It's been lovely having the house to myself during the day, with just the dogs for company. Po-po sleeps on the couch next to me, and Ginny lazes outside. I go out the front every hour or so and turn on the watering system, so the garden isn't looking as parched as it was. I'm getting plenty of time to fantasize about how I want to renovate this house, and I'm starting to make plans for the garden. It's nice to take a break from psychology and to be thinking about creating beautiful things. I might even start painting again, though I need to practice my piano. Beethoven's Pathetique and Tempest sonatas are calling to me. Wish I could sing with the MSO chorus again, but I can sing along to recordings of some of the works we sang. Redoing Schnittke's choral concerto would be fun (difficult works being good for your brain) I think there's a recording with the score on YouTube...
I'm hungry again, best cook lunch to feed my poor cells, they are clamoring for food after suffering an unexpected attack that depleted all their resources. Food, then sleep.
Next week: week 3. Predicted to be the recovery week. Fingers crossed.
My surgeon told me I'd experienced nearly every side effect when I saw her on Tuesday (200ml from the seroma, it's slowing down!), and I imagined a row of little badges, one for each side effect - seroma, axillary web syndrome (aka cording), nausea, dehydration, dry mouth, oral thrush, gut disturbance, constipation, diarrhea, bone pain, fatigue, excessive sedation with some painkillers...
Hair loss is due to start in the next week, but I'm prepared. I have found some elastics to tie it into pony tails, and I'll get Ben and the boys to cut them off for me. Then Ben can use his Wahl hair clippers to make it even, and if my scalp is not too sensitive, I'll get him to shave my head. Then I'll pack my hair into a ziplock bag, singing 'nothing compares 2u', and start my new life as a skinhead. Or a Buddhist nun.
I have 6 hats and 2 wigs to choose from (one long, dark, and natural hair, loaned by a dear friend, the other shorter and synthetic, more my hair colour). People say you feel the cold on your head at night, so I'll be wearing a beanie to keep warm in bed, not that I should need it while this heatwave continues. We've moved to the downstairs bedrooms because it's just too hot upstairs to sleep, though unlike Melbourne, where the nightly minimum is only 20, it gets to a nice cool 12-14 overnight in Launceston. Median property prices are pretty good too, if you'd like to move down here. We need healthcare workers, and lots of workers under 65, though finding work can be difficult for some.
Launceston is a lovely place, with lovely people. It's so touching to have friends of friends, or old classmates, offering to help. I've even made a new friend in the last couple of weeks, a delightful woman who I'd only met once before, and who is wonderful to spend time with. There's a generosity of spirit in the people here that I never experienced in the community where I lived in melbourne, but maybe it's because I'm home, that I'm one of them, and that I never had that depth of contacts and belonging in melbourne (even though I have some absolutely marvelous friends there). I think the less stressful pace of life here also helps foster a sense of community, and a willingness to help other people. Everyone is only 5-20 minutes away, we don't spend hours commuting each week, there's more time to spend with other people. I'm so glad I came home.
So It's been a pretty good week. I had a long talk with a genetic counsellor, who thinks there is a very low chance of me having a BRCA gene, so my ovaries look safe for now. I found I had enough energy each morning to go for a walk (Ginny is very happy about that), and then to potter around in the kitchen making breakfast and my vege juice. Surprising how long it takes to do such simple things, though it's interspersed with attempts to tidy up the kitchen and family area. I saw a condition on Facebook described as "housework distractibility disorder," where you start one task, get distracted by another, then another, and at the end of it have very little complete. Luckily, doing this each day has resulted in the kitchen and family area being reasonably tidy. I even found the energy to move some small tables around so that the furniture in the family area looks quite good. Eclectic, but I'm happy with it. One troublesome room down, three more to go.
So, my routine for the last week was: get up with the boys around 630 (wow! Regular awake time does improve sleep hygiene); get their food ready; encourage them to pack their own bags; shower (doing lots of conditioning to make my wig donation as lustrous as possible); breakfast with pottering around; walk for 30 minutes (preferably with a friend); talk to visiting friend about renovation ideas; start to feel tired at 1030, but also ravenous; cook and eat eggs or some other protein; lie on the couch and watch abc iView (Shakespeare, ages of Britain, Doctor Blake mysteries, miss Fisher's murder mysteries (I lust after her clothes), the pre-raphaelite brotherhood). Lovely to watch grownup tv uninterrupted.
I haven't felt like sleeping during the day, just needing to lie down, drink water, and eat lots of protein. I turned into Mumzilla around 5pm on the one day when I hadn't had enough protein - I felt achey and ravenously hungry, and although I knew I needed to lie down, I needed to eat more. This meant cooking dinner (chicken sausages and veges), and getting very irritated with two boys who had not unpacked their school bags, and who complained at everything I asked them to do. I feel bad for getting so cross with them, but I felt like utter crap, I needed to eat and rest, and in drawing up a list of chores for them to do, I have realized how much I've been doing for them because it's been easier than fighting about it. I don't have the energy to do so many things for them, and it will be better for all of us if they start pulling their weight and getting into some good routines. Avoiding conflict has led to some problematic behaviours and attitudes. Luckily, setting clear routines and expectations is seeing those behaviours resolve.
It's been lovely having the house to myself during the day, with just the dogs for company. Po-po sleeps on the couch next to me, and Ginny lazes outside. I go out the front every hour or so and turn on the watering system, so the garden isn't looking as parched as it was. I'm getting plenty of time to fantasize about how I want to renovate this house, and I'm starting to make plans for the garden. It's nice to take a break from psychology and to be thinking about creating beautiful things. I might even start painting again, though I need to practice my piano. Beethoven's Pathetique and Tempest sonatas are calling to me. Wish I could sing with the MSO chorus again, but I can sing along to recordings of some of the works we sang. Redoing Schnittke's choral concerto would be fun (difficult works being good for your brain) I think there's a recording with the score on YouTube...
I'm hungry again, best cook lunch to feed my poor cells, they are clamoring for food after suffering an unexpected attack that depleted all their resources. Food, then sleep.
Next week: week 3. Predicted to be the recovery week. Fingers crossed.
Sunday, 3 March 2013
First week of chemo
My first chemo appointment was scheduled for 815 on Tuesday last week. They say it's good for people to keep track of how they respond, to help with planning future treatments. So here goes...
I felt pretty anxious about having chemo. All the knowledge and rationalization in the world doesn't overcome a very primitive (& realistic) fear about letting someone put poisonous chemicals into your body.
I had woken at 430am, but decided to go back to sleep until David was sure to wake me at 630. He always does, always has. I dozed, and dreamt that I was late for my chemo. I woke up in that dream and dreamt that I was really late for my chemo, that someone was telling me it was 930am. I forced my eyes open to find the kids sleeping either side of me, and David's watch showing the time as 718. Damn! It's hard to get everyone ready for school on a normal day if we get up at 7, 720 was really going to be a struggle.
The initial plan was for mum to take the boys to school, and Ben to take me for my 815 appointment. The boys were anxious too, so I suggested mum take me and Ben take them, but with our chaotic, rushed start to the day, the kids were getting more anxious. In the end, Ben decided to let them have the day at home, so they could see that I would be okay. So mum stayed home with the boys and Hannah, and Ben took me to the Holman Clinic. All good so far.
At the Holman Clinic I was the first person in the waiting room. All good. I sent Ben off to get me a chai latte (I don't enjoy even Stella's wonderful coffee since I was diagnosed), and a bircher museli (my regular work breakfast). A chirpy nurse called Fiona came to escort me to the chemo room, and my friend Brooke dropped by, making sure she didn't spend too long in the chairs in case they tried to infuse here again too (she'd been treated there a few years ago and has been a constant source of inspiration to me, wonderful woman!). Ben came back, they gave me a premed tablet to help with the nausea, and then they set me up for my first infusion of fluids and anti emetics. Despite having a local anesthetic at my infusaport, it stung when they accessed it!
Amazing how anxiety heightens pain... I'm usually fine with needles and blood tests, yet I found myself in tears when bloods were taken the day before, and it felt like there was stinging under the skin when the initial fluids were going into the infusaport. Chemo nurse Fiona had told me to let them know if there was any discomfort, as it's important to be sure the drugs are going into the vein, and not under the skin. So I told her, she and the doctor had a look at me, and booked me in for an Xray at 1130, where they would inject some dye to confirm where the port was emptying. This gave us an hour and a half to go home, check on the boys, run some errands in town (including getting my new multifocals, another sign of age!), eat some bircher museli (they hadnt had any at 830) and then go for the Xray.
There was a long wait for the Xray, but at least I knew the radiologist (the father of one of David's friends, who gave a brilliant session on neuroimaging for neuropsychs at our conference last year). The Xray showed the dye pumping nicely where it should, so I was reassured that the chemo wasn't going to end up in the wrong place. A kind radiology nurse patted my hand and told me that things are never straightforward for people who work in hospitals, they always seem to have more complications than other people, but not to worry, just keep asking questions, they'd look after me, everything would be ok. I felt paradoxically reassured by this interaction. Her bedside manner and kindness was calming, even though her words seemed to be harbingers of doom!
So, 5 hours after jolting out of sleep, I finally started the chemo. Drank 2-3 liters of water over the time, as per my pre-reading that recommends 2-3 litres per day for the first two days. Ben told me to stop drinking so much, I think he thought it was excessive. And he was sick of taking me to the loo ;)
Felt very tired during chemo, but didn't want to sleep because the nurses were giving me lots of useful info. Ben had a nice time reading something or other, and we were home around 230. I felt okay, so I dispensed Hannan's medications for the next two weeks (irritating necessity brought about by overly rigid pharmacist who refuses to put fish oil, panadol osteo, Vit D, Caltrate and Ferrograd C into the Webster packs because you're "not allowed" to put more than 7 meds in one). Did a little bit of preparation for school lunches, a little paperwork, and finally lay down for a nap at 5ish. Immediately felt like crap. A bit like you feel when you're getting the flu - achy all over, a bit dizzy, needed to go to the toilet, didn't feel like drinking. Not nauseous, just unwell. I tried to sleep, but kept waking up with a sense of malaise. I didn't want to make a fuss, but they'd said to go back to hospital if I felt unwell. I was also feeling scared. So I asked Ben to take me to the hospital.
Luckily they fast-track chemo patients through emergency (to avoid contact with infectious patients) and I was put into a quiet area. They said I was dehydrated (!!!), and I ended up being admitted overnight, given 3 litres of IV fluids and anti-emetics. I rested at home on Wednesday, and even managed an evening walk.
Thursday was ok, Mum took me to the surgeon at noon, and 500 ml was drained from my seroma. It was almost flat on that side again, and it's been filling up only slowly since then.
Friday was ok too, if going to the fifth funeral in one year is okay. Dear old uncle Brian had a lovely send-off, and there were lots of cousins and other family there. I pigged out on Finney's little chocolate eclairs, they were fantastic! Just the kind of high-calorie food another wise Fiona says I need. But I didn't feel up to staying, it was good to go and to see people, I just couldn't get caught up in the gathering.
Ben took me to school-mate Fiona's place, and we went for a walk around the school before she took us to the boys' swimming lesson at 330. Friday was my most embarrassing day so far - two episodes of urinary incontinence - though nobody knew until now. (i think i wrote a warning about warts and all about a month ago). I met another friend at swimming, a physiotherapist, and she talked about extruser muscles and pelvic floors and all sorts of things. I didn't have a UTI (urinary tract infection), and it hasn't recurred since, but it was bewildering to be walking along and suddenly wetting myself. Aren't your glad I shared that?
Saturday was utter crap. I had severe abdominal pains, and worked out that I hadn't had a proper BM since wednesday. I never knew constipation could be so painful. It was as bad as labour pains, only my whole abdomen was gripped in a crampy spasm of pain. All day. Only relieved by lying flat with my knees elevated. And getting started on movicol. I was nearly going to go to the hospital again, but decided to enjoy the beautiful day with a walk at Seaport and a chance to eat. Mud's confit chicken was delicious, as usual, and the wonders of movicol, combined with walking and the gastro-colonic reflex made me feel better - when we got home.
I must have looked a sight walking back to the car, one arm around Ben's shoulder, the other clutched across my guts. Two young inebriates, dressed for a party in reflective shades, shorts, and construction hats, came up and asked me if I'd had too much beef vindaloo. I said 'no, chemotherapy', three times before they stopped going on about vindaloo. One of them said sorry, then his mate warned me that too much vindaloo is bad too.
I slept well Saturday night, despite frequent trips to the bathroom, and felt proud of myself for not going to hospital with constipation.
Sunday ( day 5) I was exhausted. I slept all morning, had little appetite, moved downstairs to a cooler bedroom, decided to have a bath because my thighs were aching, took my temperature (38), went to hospital. Had some tests, a litre of fluids, antibiotics, medicine for oral thrush (great!), instructions to gargle salt water frequently, drink fluids, take anti-emetics, wean self slowly off endone and panadeine forte, and have my bloods done again on day 8 - the nadir when my white cell count will be lowest is yet to come. What fun!
I am developing strong feelings of affection for my medical oncologist. He introduced me to my new favourite medicine - Movicol - and he came to see me in emergency yesterday. He is kind and sympathetic, and very supportive. He's giving me lots of practical advice and reassurance, and I think I'll get through okay with him looking after me. It's also great to have the love and support of so many other people. I'll get through it, though it isn't something I hoped for in my life.
I felt pretty anxious about having chemo. All the knowledge and rationalization in the world doesn't overcome a very primitive (& realistic) fear about letting someone put poisonous chemicals into your body.
I had woken at 430am, but decided to go back to sleep until David was sure to wake me at 630. He always does, always has. I dozed, and dreamt that I was late for my chemo. I woke up in that dream and dreamt that I was really late for my chemo, that someone was telling me it was 930am. I forced my eyes open to find the kids sleeping either side of me, and David's watch showing the time as 718. Damn! It's hard to get everyone ready for school on a normal day if we get up at 7, 720 was really going to be a struggle.
The initial plan was for mum to take the boys to school, and Ben to take me for my 815 appointment. The boys were anxious too, so I suggested mum take me and Ben take them, but with our chaotic, rushed start to the day, the kids were getting more anxious. In the end, Ben decided to let them have the day at home, so they could see that I would be okay. So mum stayed home with the boys and Hannah, and Ben took me to the Holman Clinic. All good so far.
At the Holman Clinic I was the first person in the waiting room. All good. I sent Ben off to get me a chai latte (I don't enjoy even Stella's wonderful coffee since I was diagnosed), and a bircher museli (my regular work breakfast). A chirpy nurse called Fiona came to escort me to the chemo room, and my friend Brooke dropped by, making sure she didn't spend too long in the chairs in case they tried to infuse here again too (she'd been treated there a few years ago and has been a constant source of inspiration to me, wonderful woman!). Ben came back, they gave me a premed tablet to help with the nausea, and then they set me up for my first infusion of fluids and anti emetics. Despite having a local anesthetic at my infusaport, it stung when they accessed it!
Amazing how anxiety heightens pain... I'm usually fine with needles and blood tests, yet I found myself in tears when bloods were taken the day before, and it felt like there was stinging under the skin when the initial fluids were going into the infusaport. Chemo nurse Fiona had told me to let them know if there was any discomfort, as it's important to be sure the drugs are going into the vein, and not under the skin. So I told her, she and the doctor had a look at me, and booked me in for an Xray at 1130, where they would inject some dye to confirm where the port was emptying. This gave us an hour and a half to go home, check on the boys, run some errands in town (including getting my new multifocals, another sign of age!), eat some bircher museli (they hadnt had any at 830) and then go for the Xray.
There was a long wait for the Xray, but at least I knew the radiologist (the father of one of David's friends, who gave a brilliant session on neuroimaging for neuropsychs at our conference last year). The Xray showed the dye pumping nicely where it should, so I was reassured that the chemo wasn't going to end up in the wrong place. A kind radiology nurse patted my hand and told me that things are never straightforward for people who work in hospitals, they always seem to have more complications than other people, but not to worry, just keep asking questions, they'd look after me, everything would be ok. I felt paradoxically reassured by this interaction. Her bedside manner and kindness was calming, even though her words seemed to be harbingers of doom!
So, 5 hours after jolting out of sleep, I finally started the chemo. Drank 2-3 liters of water over the time, as per my pre-reading that recommends 2-3 litres per day for the first two days. Ben told me to stop drinking so much, I think he thought it was excessive. And he was sick of taking me to the loo ;)
Felt very tired during chemo, but didn't want to sleep because the nurses were giving me lots of useful info. Ben had a nice time reading something or other, and we were home around 230. I felt okay, so I dispensed Hannan's medications for the next two weeks (irritating necessity brought about by overly rigid pharmacist who refuses to put fish oil, panadol osteo, Vit D, Caltrate and Ferrograd C into the Webster packs because you're "not allowed" to put more than 7 meds in one). Did a little bit of preparation for school lunches, a little paperwork, and finally lay down for a nap at 5ish. Immediately felt like crap. A bit like you feel when you're getting the flu - achy all over, a bit dizzy, needed to go to the toilet, didn't feel like drinking. Not nauseous, just unwell. I tried to sleep, but kept waking up with a sense of malaise. I didn't want to make a fuss, but they'd said to go back to hospital if I felt unwell. I was also feeling scared. So I asked Ben to take me to the hospital.
Luckily they fast-track chemo patients through emergency (to avoid contact with infectious patients) and I was put into a quiet area. They said I was dehydrated (!!!), and I ended up being admitted overnight, given 3 litres of IV fluids and anti-emetics. I rested at home on Wednesday, and even managed an evening walk.
Thursday was ok, Mum took me to the surgeon at noon, and 500 ml was drained from my seroma. It was almost flat on that side again, and it's been filling up only slowly since then.
Friday was ok too, if going to the fifth funeral in one year is okay. Dear old uncle Brian had a lovely send-off, and there were lots of cousins and other family there. I pigged out on Finney's little chocolate eclairs, they were fantastic! Just the kind of high-calorie food another wise Fiona says I need. But I didn't feel up to staying, it was good to go and to see people, I just couldn't get caught up in the gathering.
Ben took me to school-mate Fiona's place, and we went for a walk around the school before she took us to the boys' swimming lesson at 330. Friday was my most embarrassing day so far - two episodes of urinary incontinence - though nobody knew until now. (i think i wrote a warning about warts and all about a month ago). I met another friend at swimming, a physiotherapist, and she talked about extruser muscles and pelvic floors and all sorts of things. I didn't have a UTI (urinary tract infection), and it hasn't recurred since, but it was bewildering to be walking along and suddenly wetting myself. Aren't your glad I shared that?
Saturday was utter crap. I had severe abdominal pains, and worked out that I hadn't had a proper BM since wednesday. I never knew constipation could be so painful. It was as bad as labour pains, only my whole abdomen was gripped in a crampy spasm of pain. All day. Only relieved by lying flat with my knees elevated. And getting started on movicol. I was nearly going to go to the hospital again, but decided to enjoy the beautiful day with a walk at Seaport and a chance to eat. Mud's confit chicken was delicious, as usual, and the wonders of movicol, combined with walking and the gastro-colonic reflex made me feel better - when we got home.
I must have looked a sight walking back to the car, one arm around Ben's shoulder, the other clutched across my guts. Two young inebriates, dressed for a party in reflective shades, shorts, and construction hats, came up and asked me if I'd had too much beef vindaloo. I said 'no, chemotherapy', three times before they stopped going on about vindaloo. One of them said sorry, then his mate warned me that too much vindaloo is bad too.
I slept well Saturday night, despite frequent trips to the bathroom, and felt proud of myself for not going to hospital with constipation.
Sunday ( day 5) I was exhausted. I slept all morning, had little appetite, moved downstairs to a cooler bedroom, decided to have a bath because my thighs were aching, took my temperature (38), went to hospital. Had some tests, a litre of fluids, antibiotics, medicine for oral thrush (great!), instructions to gargle salt water frequently, drink fluids, take anti-emetics, wean self slowly off endone and panadeine forte, and have my bloods done again on day 8 - the nadir when my white cell count will be lowest is yet to come. What fun!
I am developing strong feelings of affection for my medical oncologist. He introduced me to my new favourite medicine - Movicol - and he came to see me in emergency yesterday. He is kind and sympathetic, and very supportive. He's giving me lots of practical advice and reassurance, and I think I'll get through okay with him looking after me. It's also great to have the love and support of so many other people. I'll get through it, though it isn't something I hoped for in my life.
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