4 more weeks of taxol. We are on the downward stretch. Thank god as I am tired and have an mad rash over my body which I'm pretty sure is from the taxol.
My poor family has been through so much trauma this year, on Monday my mother in law died suddenly leaving my husband devastated. Then when my eldest asked for a day off for the funeral, they sacked her! Nice and understanding. Just what you want in an employer. 2012 can go bite my ass! How much more can a family take? I feel on the edge of things sometimes especially where my girls are concerned. I want to protect them from bullies and manipulators but it's so hard especially when they are in their place of employment and in their other home.
Their father and his girlfriend are some of the worst. What kind of people emotionally manipulate a little girl who wants to spend some extra time with her mother while she is going through breast cancer treatment because she is afraid she may die? Selfish emotionally immature ones that's who. My poor girl was made to feel guilty by a father who said he would be sad if she spent an extra 3 days a fortnight with me and his girlfriend who thought that things should be kept as normal. What's normal about this situation? Nothing! Whats normal about shared care of children? Nothing! It just confuses them and leaves with a sense of not having a true home base. And another thing, whose business is it of yours to be sticking your nose in making my child confused and upset? You've been around for 5 minutes and while you try and portray happy families with your sickeningly sweet Facebook posts on my daughters wall(designed so I can see them? Yes I think so) the truth is that one who has to try so hard, must be seriously lacking in that which she so desires. I think life behind closed doors is very different, especially if you constantly feel the need to get one up on someone with breast cancer going through chemotherapy! Maybe I'm being emotional and over sensitive, but it's not just me who has seen and commented on it. My friends and family have all asked what her story is? It's very hard to see your children being manipulated when they just need a little bit of understanding. Who would it have hurt to say sure sweetheart, we understand this is a hard time, go and spend some extra time with your mum and when all this settles down, we can reasses the situation then. But I guess a man who thinks his child is over it and healed from a fun afternoon in the pool is about as emotionally deep as an evaporated puddle.
And now I have my husband to look after and his father who has been staying at our house since the death. I was reminded of our emotionally fragile we all are when my husband became upset on fathers day because no one had said happy fathers day to him. It wasn't intentional, I was just waiting for all the girls to be together to give him his gifts. But we are all hypersensitive at the moment.
And so on the eve of my mother in laws funeral, I have my girls home with me again and I am complete. Now just to get through tomorrow!
Thursday, 13 September 2012
Monday, 27 August 2012
Number 6 of taxol/herceptin done and dusted. Halfway there. Physically I feel good, emotionally I'm exhausted. The stress of scans and what they may or may not mean coupled with the everyday family/work/life/money stressors has stretched me. At times I feel at the edge of breaking point.
I worry about my treatment and if it's going to work. I worry about our finances and if we have enough money. I worry about my husband and his health. I worry about my mum and her health. I worry about my children and how they are coping not only with my diagnosis but life in general. Puberty, high school, new jobs, bullies, going back and forth from one house to another (we have shared care at 50% each) it all takes its toll.
My middle child tells me she is having nightmares about me dieing and when we approach her father about her being able to spend more time at my house he stonewalls and then is non receptive so the poor thing is then confused and torn between us both. You'd think that in this situation people would be more caring and accommodating to a child who is afraid her mother is going to die. I guess not. The whole situation tears me up inside.
My eldest child is being bullied at work by colleagues who for some reason have taken a dislike to her and who leave her alone after the centre has closed with a child who hasn't been picked up and doesn't speak a word of English! Research your child care centers people! There are some dodgy operators out there!
What is the right way? How do I get them through this?
Saturday, 25 August 2012
From frying pan to fire
So it's week. 5 of taxol/herceptin. I've gone back to work, had an MRI of my head and now have to have a bone scan. Am currently feeling very scared and sorry for myself.
I've been back at work for about 4 weeks now. The first 2 weeks were horrendous and I was ready to resign. I felt very overwhelmed and was constantly being confronted with my own cancer and mortality. I was trying to figure out what the hell I was going to do for a crust and was considering all sorts of things including working on the casual pool.
The headache which started after the last cycle of AC continued and had days where it was constant and freaking me out. I wasn't sleeping properly and was constantly worrying about my brain and whether there was cancer in it. I told my oncologist and she said she didn't think I had brain mets but would send me for an MRI anyway. Unfortunately the scan was booked for the following week so I had 7 excruciating days to endure. The headache did ease off which made me feel slightly comforted. Slightly! The day of the MRI I was wound up tight like a spring. I had my chemo then off we went. On the way I popped a lorazepam to help me relax. At the scan I had to strip down to my undies and wear a paper gown. Then I lay on the narrow little bed and they popped a set of headphones on me and a funny cage thing over my head. I don't really know how long the scan took I just remember my mantra of "clear brain, clear brain, clear brain" and the clunking of magnets and whirring of the machine. My doctor said she would call me with the results when she got them. When I got home I slept for about 3 hours and woke with no missed calls on my phone.
The next day at work I was a bit of a mess. But only internally. Externally unless you knew me you wouldn't know anything was wrong. All day I waited for the phone call. And all day it didn't come. At 5 pm I couldn't wait any longer so I texted my doc and asked if she had my results yet. She called me back and told me that I had a brain and it had no cancer in it. This was great news! Hooray!
Still I had moments of uneasiness as if something wasn't quite right. I kept having thoughts of what if she read the wrong one, or what if they made a mistake, or what if there was something but she didn't want to tell me over the phone, she just wanted to wait until clinic to tell me personally. I pushed these thoughts out of my mind and just enjoyed the fact that my brain was free of cancer. I was sleeping better, actually enjoying work again, I had been given BMT to look after which was really good as it was one more step away from straight oncology which made it a little easier to deal with.
The morning of chemo while I was getting ready, I had a moment of anxiety about my MRI. It passed fairly quickly and I didnt give it a 2nd thought. Then when I was there, my onc says to me, I want to see you and the bottom fell out of my gut and I could feel the hot prickles on my face. What about I ask? Your treatment she tells me. Huh? I am confused. I follow her into the office and she tells me there is something on my MRI. I feel sick, what is it? She says the brain is clear and looks good but at the base of my skull, a small bone called the clivus has lit up on the scan. They have reported that it is most likely red marrow but could be bone metastases. I now have to have a bone scan. Now I feel sick. And numb. And fucking angry. Up and down rollercoaster of emotions. I feel like I am on the edge of freaking out. How much more? I go through thinking i am going to die, to having a reprieve, to thinking I am going to die again! God help me! The girls in the clinic and my breast care nurse want to talk. But I really don't want to. What is there to say? They're all going to say its probably nothing. The likelihood of it being anything is small. Yes but the likelihood of me having cancer in the first place was small too.
Thankfully my bone scan was booked for the Wednesday, 2 days after my chemo. I don't think I could have gone another week waiting like I did for the MRI. I tell my husband and for the first time I can tell he's worried as he is very quiet and doesn't try and reassure me that it's probably nothing like he usually does. Then I tell my mum and I know she is really upset. I tell my eldest daughter, and the younger girls overhear me talking about it so I tell them too. My youngest seems angry and asks why didn't they do all of this in the beginning? I explain to her that it's not normally done unless you have positive lymph nodes because the likelihood of it having spread is very minimal and they don't like to expose you to the radiation unless it's really needed.
Tuesday at work is a complete washout. I tell the everyone and they are all suitably sympaetic. I don't really end up doing much that day, I appear to be reading the same thing over and over again without actually processing anything. That night after everyone has gone to bed I am still up. I am thinking about death, mine in particular. I am wondering what it will be like. Where will I die? I don't really want to die in hospital with people I know looking after me. Will I go to a hospice? I think I'd like to die here at home. These thoughts are awful I know but I can't stop them.
Wednesday morning D-Day. Scan is booked for 3, have to have the radioactive tracer injected at 1. I get up, do some exercises then take the dogs for a walk. I have some lunch and off we go. We get to the imaging rooms and the doctor tells us that their machine is broken and we have the option of rebooking or going to st George private. Ummmmm, private please! I ain't waiting any longer!
So he gives me my injection and off we go.
I am nervous but also strangely calm and resolute. No matter the outcome I will fight this fucker with everything in my being. The 5 year overall survival for bone mets isn't very high and i think the 10 year OS is almost non existant but I will be in that percentage. I will do everything I can to live as long as I can.
I'm called in and am lying on the table. My eyes are closed and my mantra is going through my head over and over. Cancer free bones, cancer free bones. I'm getting good at these mantras! They are a part of my daily ritual now. The scan takes about 10 minutes and then the nuclear med technician says to me "all good, I'll just show the films to the doctor." all good? WTF does that mean? Are they clear? I feel a surge of hope and try to push it down. Not yet, we are not in the clear just yet. As I'm walking out the doctor has my films and asks me a few questions about the history etc. I know this man, he is the specialist that would review the PET scans for the lymphoma MDT. A million years ago in another life I was part of that team discussing scans and biopsies and the treatments for patients...... I wonder if he recognizes me? I highly doubt it. He tells me the scan looks pretty good other than some arthritis in my back, there doesn't appear to be anything abnormal. Oh dear god I want to hug him! But again I will wait for the official report. I go and wait in the waiting room again, I have to have another scan of my head to check out the clivus. I tell my husband what he said. He is relieved. I am slightly but a, still waiting for the official report. I have the second scan and we wait for the report. Andrew says to me you can't open it, it's for the doctor! Ha! I tell him! Watch me! And as soon as I get it, I tear that sucker open. Blah blah, kyphosis, scoliosis, yes I know that, conclusion: no evidence of skeletal metastases! Thank you thankyou thankyou god! I text everyone to tell them. I feel like I've been reprieved from death row!
That night, I pop the the bottle of Moët I was given for my birthday and my husband and I have a drink to celebrate.
Unfortunately, the anxiety doesn't go that easily and the uneasy feeling lingers a little longer. I won't be truly settled until my oncologist sees it and is happy. I have to keep reading the report to settle myself. It's not that I don't trust the radiologists skill and opinion I think it's just a residue of anxiety that is hanging around.
I've been back at work for about 4 weeks now. The first 2 weeks were horrendous and I was ready to resign. I felt very overwhelmed and was constantly being confronted with my own cancer and mortality. I was trying to figure out what the hell I was going to do for a crust and was considering all sorts of things including working on the casual pool.
The headache which started after the last cycle of AC continued and had days where it was constant and freaking me out. I wasn't sleeping properly and was constantly worrying about my brain and whether there was cancer in it. I told my oncologist and she said she didn't think I had brain mets but would send me for an MRI anyway. Unfortunately the scan was booked for the following week so I had 7 excruciating days to endure. The headache did ease off which made me feel slightly comforted. Slightly! The day of the MRI I was wound up tight like a spring. I had my chemo then off we went. On the way I popped a lorazepam to help me relax. At the scan I had to strip down to my undies and wear a paper gown. Then I lay on the narrow little bed and they popped a set of headphones on me and a funny cage thing over my head. I don't really know how long the scan took I just remember my mantra of "clear brain, clear brain, clear brain" and the clunking of magnets and whirring of the machine. My doctor said she would call me with the results when she got them. When I got home I slept for about 3 hours and woke with no missed calls on my phone.
The next day at work I was a bit of a mess. But only internally. Externally unless you knew me you wouldn't know anything was wrong. All day I waited for the phone call. And all day it didn't come. At 5 pm I couldn't wait any longer so I texted my doc and asked if she had my results yet. She called me back and told me that I had a brain and it had no cancer in it. This was great news! Hooray!
Still I had moments of uneasiness as if something wasn't quite right. I kept having thoughts of what if she read the wrong one, or what if they made a mistake, or what if there was something but she didn't want to tell me over the phone, she just wanted to wait until clinic to tell me personally. I pushed these thoughts out of my mind and just enjoyed the fact that my brain was free of cancer. I was sleeping better, actually enjoying work again, I had been given BMT to look after which was really good as it was one more step away from straight oncology which made it a little easier to deal with.
The morning of chemo while I was getting ready, I had a moment of anxiety about my MRI. It passed fairly quickly and I didnt give it a 2nd thought. Then when I was there, my onc says to me, I want to see you and the bottom fell out of my gut and I could feel the hot prickles on my face. What about I ask? Your treatment she tells me. Huh? I am confused. I follow her into the office and she tells me there is something on my MRI. I feel sick, what is it? She says the brain is clear and looks good but at the base of my skull, a small bone called the clivus has lit up on the scan. They have reported that it is most likely red marrow but could be bone metastases. I now have to have a bone scan. Now I feel sick. And numb. And fucking angry. Up and down rollercoaster of emotions. I feel like I am on the edge of freaking out. How much more? I go through thinking i am going to die, to having a reprieve, to thinking I am going to die again! God help me! The girls in the clinic and my breast care nurse want to talk. But I really don't want to. What is there to say? They're all going to say its probably nothing. The likelihood of it being anything is small. Yes but the likelihood of me having cancer in the first place was small too.
Thankfully my bone scan was booked for the Wednesday, 2 days after my chemo. I don't think I could have gone another week waiting like I did for the MRI. I tell my husband and for the first time I can tell he's worried as he is very quiet and doesn't try and reassure me that it's probably nothing like he usually does. Then I tell my mum and I know she is really upset. I tell my eldest daughter, and the younger girls overhear me talking about it so I tell them too. My youngest seems angry and asks why didn't they do all of this in the beginning? I explain to her that it's not normally done unless you have positive lymph nodes because the likelihood of it having spread is very minimal and they don't like to expose you to the radiation unless it's really needed.
Tuesday at work is a complete washout. I tell the everyone and they are all suitably sympaetic. I don't really end up doing much that day, I appear to be reading the same thing over and over again without actually processing anything. That night after everyone has gone to bed I am still up. I am thinking about death, mine in particular. I am wondering what it will be like. Where will I die? I don't really want to die in hospital with people I know looking after me. Will I go to a hospice? I think I'd like to die here at home. These thoughts are awful I know but I can't stop them.
Wednesday morning D-Day. Scan is booked for 3, have to have the radioactive tracer injected at 1. I get up, do some exercises then take the dogs for a walk. I have some lunch and off we go. We get to the imaging rooms and the doctor tells us that their machine is broken and we have the option of rebooking or going to st George private. Ummmmm, private please! I ain't waiting any longer!
So he gives me my injection and off we go.
I am nervous but also strangely calm and resolute. No matter the outcome I will fight this fucker with everything in my being. The 5 year overall survival for bone mets isn't very high and i think the 10 year OS is almost non existant but I will be in that percentage. I will do everything I can to live as long as I can.
I'm called in and am lying on the table. My eyes are closed and my mantra is going through my head over and over. Cancer free bones, cancer free bones. I'm getting good at these mantras! They are a part of my daily ritual now. The scan takes about 10 minutes and then the nuclear med technician says to me "all good, I'll just show the films to the doctor." all good? WTF does that mean? Are they clear? I feel a surge of hope and try to push it down. Not yet, we are not in the clear just yet. As I'm walking out the doctor has my films and asks me a few questions about the history etc. I know this man, he is the specialist that would review the PET scans for the lymphoma MDT. A million years ago in another life I was part of that team discussing scans and biopsies and the treatments for patients...... I wonder if he recognizes me? I highly doubt it. He tells me the scan looks pretty good other than some arthritis in my back, there doesn't appear to be anything abnormal. Oh dear god I want to hug him! But again I will wait for the official report. I go and wait in the waiting room again, I have to have another scan of my head to check out the clivus. I tell my husband what he said. He is relieved. I am slightly but a, still waiting for the official report. I have the second scan and we wait for the report. Andrew says to me you can't open it, it's for the doctor! Ha! I tell him! Watch me! And as soon as I get it, I tear that sucker open. Blah blah, kyphosis, scoliosis, yes I know that, conclusion: no evidence of skeletal metastases! Thank you thankyou thankyou god! I text everyone to tell them. I feel like I've been reprieved from death row!
That night, I pop the the bottle of Moët I was given for my birthday and my husband and I have a drink to celebrate.
Unfortunately, the anxiety doesn't go that easily and the uneasy feeling lingers a little longer. I won't be truly settled until my oncologist sees it and is happy. I have to keep reading the report to settle myself. It's not that I don't trust the radiologists skill and opinion I think it's just a residue of anxiety that is hanging around.
Saturday, 28 July 2012
Let it snow!
Well a fabulous weekend was had in the snow, unfortunately not long enough. I had my first Taxol/Herceptin on Monday and compared to AC, TH is a walk in the park!
This has been a crazy full on week, back from the snow on Sunday, chemo Monday, was supposed to go back to work Tuesday but ended up in hospital with my eldest daughter instead! She was admitted to high dependency with asthma so the return to work was put off until Thursday. The poor baby was not happy with being in hospital so I spent my time to and from work visiting and comforting her. Needless to say by the end of the week I am exhausted. Also battling a bit of a head cold/sinusitis doesn't help. I've had a headache for 2 weeks and have convinced myself I have brain mets. Nasty nasty thoughts. I'm so emotional and scared and tired and really don't want to play anymore. I don't like this game. I'm really feeling sorry for myself now. Why me? It's not fair! I look after cancer patients. I'm not the cancer patient! Going back to work was interesting. While I was there it was fine, but on reflection, I don't know if I really want to be there. Don't I have enough cancer in my life? Unfortunately life doesn't stop and bills need to be paid. I think somehow I might have a hard time getting another job and I certainly don't want to go back to clinical nursing. Am off to see the clinical psychologist on Monday. Hopefully she can help me deal with all the bullshit inside my brain. God knows I'm not dealing with it so well at the moment.
Sunday, 15 July 2012
2 weeks later......
Since my last post I have had another round of chemo, booked a ski trip, shaved my daughters' heads to raise money for breast cancer research and celebrated my 40th birthday.
A fairly full on fortnight!
I booked the ski trip after the last wahwah as I needed something other than another dose of poison to look forward to. I'm also in the mindset of do not put off until tomorrow things that can be enjoyed today.
Life is short. Sometimes shorter than we expect. Enjoy it now!
I celebrated a lovely birthday with family and friends, stretching the celebrations to over 3 days! A girl doesn't turn 40 every day, and she certainly doesn't turn 40 bald every day!
I even had a couple of surprise interstate visits from my sister and cousin which was really lovely.
Then back to reality and the last cycle of AC. That stuff is rancid. Just thinking about it now makes me feel nauseated.
The side effects start at the end of the infusion of cyclophosphamide with an awful headachy/sinusy feeling. I usually have a sleep when I get home, and then the yuk yuks start. It's the only way I can explain it. You just feel YUK. It starts with a low level queasiness, headachy tiredness which just gets worse.
The next day I pop every pill in the box and just try and sleep the day away. I don't want to be awake feeling like this.
Friday is an absolute shocker. I feel sick, my bones ache from the neulasta, my head hurts and my skin hurts! Mama Mia! I am popping maxalon, stemetil, Endone, panadol! Talk about poly pharmacy! By the end of the day I am so over it and cranky I pick a fight with my husband when he gets home.
Saturday I wake up feeling better but still not 100% and I go to my daughters netball game. I last for 2 quarters before I have to leave, and I dont make it to soccer in the afternoon. The rest of the day is a write off, but at least my bones have stopped aching.
Sunday is similar. The constant queasiness and headaches are soul destroying. It's always there yet the hardcore Meds have stopped. All I have now is maxalon, stemetil and lorazepam. For the sake of not spending these days in a stupour, I try and limit them.
Sunday is spent on the couch.
And now it's Monday. At the moment, I don't feel too bad. But its always this way in the mornings, it's as the day goes on that I start to feel worse.
I have a look good feel better session this morning which I'm taking my good friend to. She also had breast cancer 10 years ago but never went to a session so she deserves one I reckon! Out of all my friends, she is the only one who knows what I am going through. She has been there, experienced all the side effects, the mental and emotional ups and downs, been bald done the lot. Every one else can only sympathize, she can hug me (albeit gently cos my skin hurts) and say I know. It means a lot to have that.
Love you babe xx
I miss my girls today, they are at their dads. I know he has as much right to see them as I do but I just want to be selfish and say no! You can't have them for a week at a time, I need them! They are my shining lights in this time of darkness! And I miss them! I want them with me always!
But I have to try and remove negative thoughts and focus on the positive. The negative saps my good juju and I need as much of it as I can get at the moment.
I follow the dalai lama such a beautiful spirit and wish I could be more tolerant. More giving and forgiving.
I am unfortunately a slave to my emotions. And they are like a roller coaster at the moment!
Saturday, 30 June 2012
She'sa mighty cold for a bald bitch!
I don't want to be bald today.
I want to have a bad hair day.
I dont want fatigue from chemotherapy
I want to be tired from working full time.
I want to be organising outings with the kids, not ferrying them to Canteen events.
I want to feel sick because I have drunk a little too much not from this shit that has been pumped into my veins.
I hate this shit disease.
I hate thinking that every twinge and pain is a secondary.
I hate thinking morbid thoughts and feeling like shit.
I dont want this shadow following me around for the rest of my life.
Worrying every time a new symptom pops up.
Worrying every time I have a follow up appointment.
sleepless nights
anxiety
depression
nausea
fatigue
chemotherapy
port a cath
blood tests
Cancer.
these are words I loathe today.
And yet I am adjuvant. I should be thankful.
I should see the glass as half full.
I should wear these scars and symptoms as my battle wounds.
I will pick myself up and damn this disease.
You wont get the better of me!
Fuck you cancer! I am stronger than you!
You wont get me.
I will wallow in my treatment side effects because it means it is doing something.
I will eat good food and exercise and treat my body as a temple so you cant get another foot hold.
I will have down moments but you wont keep me down.
I will fight you until the bitter end. Until you are gone and I am exhausted.
I will poison my body and expose it to radiation to be rid of you.
But I will be the victor. Not you.
You can go and get fucked!
(WOOD, EYE)
I want to have a bad hair day.
I dont want fatigue from chemotherapy
I want to be tired from working full time.
I want to be organising outings with the kids, not ferrying them to Canteen events.
I want to feel sick because I have drunk a little too much not from this shit that has been pumped into my veins.
I hate this shit disease.
I hate thinking that every twinge and pain is a secondary.
I hate thinking morbid thoughts and feeling like shit.
I dont want this shadow following me around for the rest of my life.
Worrying every time a new symptom pops up.
Worrying every time I have a follow up appointment.
sleepless nights
anxiety
depression
nausea
fatigue
chemotherapy
port a cath
blood tests
Cancer.
these are words I loathe today.
And yet I am adjuvant. I should be thankful.
I should see the glass as half full.
I should wear these scars and symptoms as my battle wounds.
I will pick myself up and damn this disease.
You wont get the better of me!
Fuck you cancer! I am stronger than you!
You wont get me.
I will wallow in my treatment side effects because it means it is doing something.
I will eat good food and exercise and treat my body as a temple so you cant get another foot hold.
I will have down moments but you wont keep me down.
I will fight you until the bitter end. Until you are gone and I am exhausted.
I will poison my body and expose it to radiation to be rid of you.
But I will be the victor. Not you.
You can go and get fucked!
(WOOD, EYE)
Thursday, 28 June 2012
I got the 1 am blues!
I was doing so well with my sleep patterns. Thankyou chemo for messing them up!
Feeling a bit crap this time round. Not as bad as first time, but nowhere near as good as the second one.
Slept on and off for the rest of day 1, and for most of yesterday and now BING! Im awake!
Felt so gross yesterday, just a yuck feeling in my stomach, tired and energyless.
managed to eat a little, but even though I was hungry, every time I ate I felt worse. Like the food was just sitting there not wanting to go anywhere.
My hair is almost all gone, I am almost a chrome dome. Apart from a few cactus spikes here and there which annoy the crap out of me. I give it a good scrub in the shower with a wash cloth and marvel at the amount of hair caught in it. I also marvel that there is any left on my head! but there is, I feel it when Im lying on it. poking into my head like little needles :(
Anyway 1 more round of AC to go thank god then onto the weekly taxol/herceptin. Hopefully this will be a lot kinder.
Right lets see if we can score a few more zzzzz's!
nighty night!
Feeling a bit crap this time round. Not as bad as first time, but nowhere near as good as the second one.
Slept on and off for the rest of day 1, and for most of yesterday and now BING! Im awake!
Felt so gross yesterday, just a yuck feeling in my stomach, tired and energyless.
managed to eat a little, but even though I was hungry, every time I ate I felt worse. Like the food was just sitting there not wanting to go anywhere.
My hair is almost all gone, I am almost a chrome dome. Apart from a few cactus spikes here and there which annoy the crap out of me. I give it a good scrub in the shower with a wash cloth and marvel at the amount of hair caught in it. I also marvel that there is any left on my head! but there is, I feel it when Im lying on it. poking into my head like little needles :(
Anyway 1 more round of AC to go thank god then onto the weekly taxol/herceptin. Hopefully this will be a lot kinder.
Right lets see if we can score a few more zzzzz's!
nighty night!
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