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!
Tuesday, 26 June 2012
Round 3! ding ding!
here we go for number 3.
Round 2 wasnt too bad, so Im hoping round 3 and 4 wont be cumulative and knock my socks off!
I have been fairly busy with doctors appointments, ferrying children to sport and school and catching up with friends.
Last week I got my genetic tests back, we are clear of the dreaded BRCA genes. Thank God!
I wasnt really concerned for myself as if I was positive it was a fairly easy decision to go chop chop chop. The concern was for the girls. To be faced with that ticking time bomb and the decisions that go along with it.
Thankfully they dont have to face that. They will need to be breast aware and start official screening at 29 (10 years younger than my diagnosis) but they dont need to think about having their boobs off or ovaries out at a ridiculously young age.
So it is 7 weeks since my diagnosis and I still have moments where it feels so surreal and like a huge mistake! Its like a really bad dream that when you wake up you breathe a sigh of relief and think Oh thank god that was a dream.
I cant wake up from this one.
My hair is falling out at its own pace, little wee hairs on my pillow, or on the face cloth I use to wash my head. But now all those little hairs feel like cactus spikes in my head. NOT a pleasant feeling!
It comes out easily when pulled, but they are so short, its hard to get a good grip on them. So I bought some wax and got the girls to wax my head! Sounds bizarre I know, but theyre all ready to come out so its doesnt hurt, they just need a little help. The girls had waaaay too much fun doing it. We got a lot out, and now I have some bald patches and some hair patches and still some cactus patches :(
I popped into work last week, it was great to see all the girls (and the odd bloke!) and I'm actually not dreading going back to work as much as I thought I would. I think it will be good to get back to some sense of normalcy albeit part time normalcy. Hopefully my chemo/menopausal/blonde brain will cope with thinking again!
The beast has stayed around the corner. I know he's there, but for the moment he is out of sight. This is a blessing, I dont want him around and I dont want to have to increase my meds. I will however go and see the clinical psychologist and see what she has to say.
I am amassing a fabulous collection of hats, beanies and head wraps. The other night I also bought myself a couple of cheap wigs. One long blonde curly one, a long blonde straight one and a short brown curly one. If I have to be bald I might as well have a bit of fun with it and change my hair to suit my mood and outfit!
I do however love going out with nothing on my head, just to see peoples reactions. Some people just cant cope with it! They try and sneak looks at you and then get all flustered and embarrased when you catch them. I have a little snigger to myself when this happens.
But thats just cos I am a shit stirrer :)
Round 2 wasnt too bad, so Im hoping round 3 and 4 wont be cumulative and knock my socks off!
I have been fairly busy with doctors appointments, ferrying children to sport and school and catching up with friends.
Last week I got my genetic tests back, we are clear of the dreaded BRCA genes. Thank God!
I wasnt really concerned for myself as if I was positive it was a fairly easy decision to go chop chop chop. The concern was for the girls. To be faced with that ticking time bomb and the decisions that go along with it.
Thankfully they dont have to face that. They will need to be breast aware and start official screening at 29 (10 years younger than my diagnosis) but they dont need to think about having their boobs off or ovaries out at a ridiculously young age.
So it is 7 weeks since my diagnosis and I still have moments where it feels so surreal and like a huge mistake! Its like a really bad dream that when you wake up you breathe a sigh of relief and think Oh thank god that was a dream.
I cant wake up from this one.
My hair is falling out at its own pace, little wee hairs on my pillow, or on the face cloth I use to wash my head. But now all those little hairs feel like cactus spikes in my head. NOT a pleasant feeling!
It comes out easily when pulled, but they are so short, its hard to get a good grip on them. So I bought some wax and got the girls to wax my head! Sounds bizarre I know, but theyre all ready to come out so its doesnt hurt, they just need a little help. The girls had waaaay too much fun doing it. We got a lot out, and now I have some bald patches and some hair patches and still some cactus patches :(
I popped into work last week, it was great to see all the girls (and the odd bloke!) and I'm actually not dreading going back to work as much as I thought I would. I think it will be good to get back to some sense of normalcy albeit part time normalcy. Hopefully my chemo/menopausal/blonde brain will cope with thinking again!
The beast has stayed around the corner. I know he's there, but for the moment he is out of sight. This is a blessing, I dont want him around and I dont want to have to increase my meds. I will however go and see the clinical psychologist and see what she has to say.
I am amassing a fabulous collection of hats, beanies and head wraps. The other night I also bought myself a couple of cheap wigs. One long blonde curly one, a long blonde straight one and a short brown curly one. If I have to be bald I might as well have a bit of fun with it and change my hair to suit my mood and outfit!
I do however love going out with nothing on my head, just to see peoples reactions. Some people just cant cope with it! They try and sneak looks at you and then get all flustered and embarrased when you catch them. I have a little snigger to myself when this happens.
But thats just cos I am a shit stirrer :)
Tuesday, 19 June 2012
7 hours straight of sleep. Winning!
The fluidity of my mood is amazing.
The last 2 days I was so down, scared and anxious I wanted to lock myself away and hide under the blanket.
Today I wake up much more positive. Not feeling like I am going to cry every minute.
I'm fairly sure a good nights sleep is to thank for that, and for that I would like to thank my good friend Lorazepam :) maybe thats why I feel so calm this morning!
Whatever, I'm running with it.
I went out yesterday, in the midst of all my tumultuous emotions to catch up with and old friend and workmate and also to see the radiation oncologist regarding my radiotherapy treatment.
Catching up with my lovely friend was so nice, we had a good laugh much like we used to do and crapped on about bullshit and inconsequential stuff.
I also ran into many other colleagues though the day, me with my bald head (covered by scarf) and they with their sympathetic hugs and enquiries. Although I always replied with "I'm good" when asked, everyone could tell from my tone that I wasnt and many times the tears would come unbidden. Sometimes I was lucky enough to break contact before they came, other times were not so lucky.
While I know its ok to let people see the chinks in my armour, and I'm quite happy to talk about how I feel I'm not someone who can show emotion in public. I will often not even cry in front of my family. Its a private pain and no one can comfort me. I just have to get it out in my own way.
Thankfully lunch was a crazy gossip session with my friend, there was a near miss of blubber time when I ran into my ex-medical colleagues some of whom are friends, others who are colleagues so after the niceties I excused myself fairly quickly!
The appointment with Dr Zap went very well. I was so glad I chose him. We went through data and numbers and tables to calculate risk of recurrence with and without treatment and he outlined what he wanted to do etc etc. He fully understood my need to re-excise and was very supportive even though medically he didnt feel it was necessary psychologically he knew the impact it would have on me and was happy to tailor my treatment around it.
We also discussed my genetic status. As I will be getting the results of my genetic testing on Thursday I will then know if I am at a higher risk of developing further breast or ovarian cancer. As always I have maintained that if I am BRCA positive (the breast cancer gene) I will be opting for a bilateral mastectomy. Whip those bad boys off! Dr Zap however has recommended if I do that to also have chest wall irradiation to decrease my chance of recurrence in the affected side. This has implications for reconstruction as the tissue becomes very tight and difficult to reconstruct.
Food for thought. At the end of the day I will do the thing that will preserve my life, but I will need to discuss my options with the plastics people. If they can only give me a wee set of boobies I'm not fussed. As mentioned previously I have in the market for a smaller set for a while now. Bring on the A cups! If they cant reconstruct at all, that will take some coping with. I will deal with it, but I know it will be difficult. Lots of things to think about.
My younger 2 are home tonight after being at their dads and I bask in their children-ness. All my girls are home, it warms my heart. I get a well being phone call from a medico friend and we talk about my mood and meds and the impact of a disease like this and what to do about it and also shoot the breeze. I am feeling the beast move away, but I can still see him in the distance watching me.
This morning I dont see him. I know he is still around but he has moved out of my line of site for the moment.
The last 2 days I was so down, scared and anxious I wanted to lock myself away and hide under the blanket.
Today I wake up much more positive. Not feeling like I am going to cry every minute.
I'm fairly sure a good nights sleep is to thank for that, and for that I would like to thank my good friend Lorazepam :) maybe thats why I feel so calm this morning!
Whatever, I'm running with it.
I went out yesterday, in the midst of all my tumultuous emotions to catch up with and old friend and workmate and also to see the radiation oncologist regarding my radiotherapy treatment.
Catching up with my lovely friend was so nice, we had a good laugh much like we used to do and crapped on about bullshit and inconsequential stuff.
I also ran into many other colleagues though the day, me with my bald head (covered by scarf) and they with their sympathetic hugs and enquiries. Although I always replied with "I'm good" when asked, everyone could tell from my tone that I wasnt and many times the tears would come unbidden. Sometimes I was lucky enough to break contact before they came, other times were not so lucky.
While I know its ok to let people see the chinks in my armour, and I'm quite happy to talk about how I feel I'm not someone who can show emotion in public. I will often not even cry in front of my family. Its a private pain and no one can comfort me. I just have to get it out in my own way.
Thankfully lunch was a crazy gossip session with my friend, there was a near miss of blubber time when I ran into my ex-medical colleagues some of whom are friends, others who are colleagues so after the niceties I excused myself fairly quickly!
The appointment with Dr Zap went very well. I was so glad I chose him. We went through data and numbers and tables to calculate risk of recurrence with and without treatment and he outlined what he wanted to do etc etc. He fully understood my need to re-excise and was very supportive even though medically he didnt feel it was necessary psychologically he knew the impact it would have on me and was happy to tailor my treatment around it.
We also discussed my genetic status. As I will be getting the results of my genetic testing on Thursday I will then know if I am at a higher risk of developing further breast or ovarian cancer. As always I have maintained that if I am BRCA positive (the breast cancer gene) I will be opting for a bilateral mastectomy. Whip those bad boys off! Dr Zap however has recommended if I do that to also have chest wall irradiation to decrease my chance of recurrence in the affected side. This has implications for reconstruction as the tissue becomes very tight and difficult to reconstruct.
Food for thought. At the end of the day I will do the thing that will preserve my life, but I will need to discuss my options with the plastics people. If they can only give me a wee set of boobies I'm not fussed. As mentioned previously I have in the market for a smaller set for a while now. Bring on the A cups! If they cant reconstruct at all, that will take some coping with. I will deal with it, but I know it will be difficult. Lots of things to think about.
My younger 2 are home tonight after being at their dads and I bask in their children-ness. All my girls are home, it warms my heart. I get a well being phone call from a medico friend and we talk about my mood and meds and the impact of a disease like this and what to do about it and also shoot the breeze. I am feeling the beast move away, but I can still see him in the distance watching me.
This morning I dont see him. I know he is still around but he has moved out of my line of site for the moment.
Monday, 18 June 2012
Dark Days
The sun shines without warmth
Blue skies but all is grey
Laughter in my ears that I cannot hear
Wind on my face that I cannot feel
Smooth skin and red scars
Marks to remind me of the shadow that haunts me
Rats gnawing in my belly
Troubled times in the darkness
Trying to escape the bottomless pit
I see the light
I see the sun
I know the warmth is there
I am desperate for its touch
Blue skies but all is grey
Laughter in my ears that I cannot hear
Wind on my face that I cannot feel
Smooth skin and red scars
Marks to remind me of the shadow that haunts me
Rats gnawing in my belly
Troubled times in the darkness
Trying to escape the bottomless pit
I see the light
I see the sun
I know the warmth is there
I am desperate for its touch
Night sweats, bald head and waking up with your sleep cap on your face!
Its interesting having a nude noggin!
I dont mind it but at the same time I look at girls with long flowing hair and sigh. I used to have hair like that. That in itself is a weird thought because for the past couple of years my hair has gotten shorter and shorter and when I shaved my head, I had a pixie cut! So why I'm now pining over long flowing locks, I know not.
I'm trying to get my sleeping patterns into some kind of order. The last couple of nights haven't been too bad. Although by the end of the day I am so tired I could go to bed at 7pm, I am trying to stay awake until at least 8:30. I know, I'm pretty hardcore!
I still wake up at 2-3 am but the last couple of nights Ive been able to go back to sleep without too much trouble or pharmaceuticals! Unfortunately I wake up when the husbands alarm goes off at 4:15, then when he leaves for work, then I doze until I get sick of tossing and turning and get out of bed. Every night I wake up at some point in a sweat. Ive read somewhere that this could be a sign of menopause as can the insomnia. Someone needs to tell my uterus though, its still on its normal 24 day cycle!
Yesterday was interesting. I woke up around 2am with a cracking headache and got up to go to the bathroom. When I got up I was really dizzy and had to steady myself as I walked. When I lay back down, the room was still a little spinny and took a couple of minutes to subside. This of course got me thinking immediately about brain mets. Fuck! shit thought at 2am. I started to get a little anxious but managed to go back to sleep.
Unfortunately the anxiety lingered when I got up and my mind started racing about all sorts of crap.
Ive always been nervous about what is in store for us after we die. The thought of going to heaven makes me uneasy! I just think, existing forever in another plane is a long fucking time. Wont we get bored? I try not to over think it because I do get nervy and uneasy when I do. and of course yesterday morning this was on my mind. Then I started thinking about the meaning of life.
Deep I know.
Why are we here? What is our purpose? It seems pointless sometimes, this society that we have created. There just doesnt seem to be any higher purpose for all the shit we do. Its all so self serving. These thoughts are not new, I have had them intermittently all my life, its just now in my current state, they appear to mean so much more.
The days are long at the moment because I'm not working. and while that is a good thing and gives me time to concentrate on being well and getting through chemo, its also not a good thing as I don't have a purpose, I become bored easily and my mind wanders. Then I start to think if I don't appreciate life and everything around me, maybe karma will decide to teach me a lesson. I have breast cancer! A potentially life limiting terminal disease! I should be thankful for everything I have. Thankful for life and the beautiful world that I live in and the love that I have.
It just seems a little empty at the moment.
and the anxiety creeps in.
its like a gnawing, sick feeling in the pit of your stomach.
the feeling comes before the thoughts, and sometimes the thoughts dont even come.
its just the feeling.
I dont like it.
After a couple of hours of feeling this way, I decide to take half a lorazepam. Thats why theyre there right?
It takes a little bit, then it starts to kick in.
Then I take the puppies out for a walk. Sunshine, fresh air and working up a sweat do me a world of good.
I think I may be depressed. It might be time to up the meds that I am already on. Not surprising really considering!
Big daughter and I then hit the beach. Its mighty cold but the sun is out and the waves are crashing. I need some beach therapy.
We walk along the esplanade and through the mall, do a little shopping and look in all the pretty shops.
Then we get icecream and sit and watch a big ship crash through the waves.
I feel a little better, but I know the beast is there in the background waiting for me to drop my guard.
Friday, 15 June 2012
Sleep, dear sweet beautiful sleep!
These crap ass sleeping patterns are getting me down!
I was awake at 2:30, had a cup of chamomile, did a bit of internet shopping and went back to sleep, only to wake at 4:30.
yay me!
So the hair is gone.
I woke up yesterday and my scalp was kind of sensitive. As I ran my fingers through my hair, about 6 or 7 strands came out. I also noticed a few coming out downstairs as well.
So after a day of moulting worse than my hairy behemoth malamute and playing with it by seeing how much I could pull out at one time, I bought a pair of clippers and got the girls to shave my head!
Now I have a buzz cut, I look like an egg and my head feels like velcro! According to some of the girls on my Breast Cancer network, this may also get annoying as the "cactus spikes" try and come out!
It is very weird! My head is cold.
Ive always been a hair girl, long hair, short hair, whatever, its a rare day that I dont style it. Now I have none!
Strange but quite liberating at the same time.
the only thing that concerns me is the size of my head.
I have a wee little pin head with broad shoulders and huge boobs. This of course makes my wee head look even smaller!
might have to invest in some bulky beanies! Im actually looking forward to going out to see peoples reactions. Ill only cover up if Im cold. As those who know me, I am certainly not shy!
Take me for what I am, or not at all!
hmmmmm now 5 to 5 too early for a coffee?
I was awake at 2:30, had a cup of chamomile, did a bit of internet shopping and went back to sleep, only to wake at 4:30.
yay me!
So the hair is gone.
I woke up yesterday and my scalp was kind of sensitive. As I ran my fingers through my hair, about 6 or 7 strands came out. I also noticed a few coming out downstairs as well.
So after a day of moulting worse than my hairy behemoth malamute and playing with it by seeing how much I could pull out at one time, I bought a pair of clippers and got the girls to shave my head!
Now I have a buzz cut, I look like an egg and my head feels like velcro! According to some of the girls on my Breast Cancer network, this may also get annoying as the "cactus spikes" try and come out!
It is very weird! My head is cold.
Ive always been a hair girl, long hair, short hair, whatever, its a rare day that I dont style it. Now I have none!
Strange but quite liberating at the same time.
the only thing that concerns me is the size of my head.
I have a wee little pin head with broad shoulders and huge boobs. This of course makes my wee head look even smaller!
might have to invest in some bulky beanies! Im actually looking forward to going out to see peoples reactions. Ill only cover up if Im cold. As those who know me, I am certainly not shy!
Take me for what I am, or not at all!
hmmmmm now 5 to 5 too early for a coffee?
Wednesday, 13 June 2012
Round 2
The morning after round 2. As per my current modus operandi in was up before the crack of sparrow fart. These 3 am wake ups are getting oooooooold! Am having sweats when I sleep whether it be at night or during the day. I wonder if this a sign of menopause onset? I guess time will tell.
Feeling a little queasy this morning but not too bad ( thankyou stemetil suppository)I'm waiting until I get the kids off to school before I bomb myself completely. Queasiness started again last night but nowhere near as bad as the first time, perhaps because this time I'm not constipated up to eyeballs! Hooray for regular motions!
Following my weekend meltdown over my margins, I was eager to see my oncologist and her opinion on further surgery. Before I saw her I saw 2 of my lovely breast care nurses and we talked it all out before I went in to the doc. One of them said something profound which never even occurred to me and that was that I had a say in what surgical treatment I would have! It's funny that it never occurred to me that I could say no I'm not happy with abc, I would prefer xyz. I just kinda figured that the MDT had made it's decision and I just had to wear it. Even coming from a cancer nursing background I forgot that I had rights to be involved in my treatment decisions. I wonder how non medical people fare? I felt much better after speaking to them especially as they understood where I was coming from.
I didn't necessarily want the whole thing off, just another excision to be sure nothing was left behind. My gut was telling me that was the way to go and if I ignored that and had to go through allnthis shit again in 12 months time, I'd be kicking my own ass for not pushing it.
So into the doc. After the usual exam and discussion of side effects I tell her about the MDT decision and how I felt and she says "no worries! We'll just get you in for surgery after Chemo is finished!" she is fucking awesome. I love her! Instantly all of those worries dissipate and I can now concentrate on getting through chemo. Hooray!
We look at the ki 67 (a measure of the cell turnover) and it's quite high. This means she says that the cell turnover rate is quite high making it an aggressive tumor. I ask her how long it could have been there and she says maybe 6 months? That with my HER2 status only solidifies my resolve for a re-excision. If there are cells left behind and I did nothing and had a repeat scan in January (as per the current plan) I could go back in 12 months with a repeat scan with another tumor of the same size if it has in fact been there for only 6 months. Ummmmmmm surgery please! Take another 3 cm I got plenty to spare!
Of course in the midst of this my genetic testing could come back positive in which case both of those bad boys will be long gone!
So second chemo.
My blood test on day 10 was still within ok limits. So my counts were either on their way down, or they had dropped early and were on their way up. More likely the former.
For non Meds- chemotherapy makes all your blood cells drop: you haemoglobin (red cells which carry oxygen) white cells (bodies infection fighters) and platelets(clotting factors) all of these can drop, but the one most affected are the white cells. You expect to see a drop usually around day 10-14. On day 10 mine were low but still ok.
Yesterday before chemo they were low. My doctor was happy to go ahead as I am getting an injection to boost my white cells, so they should come back to normal soon. In the meantime I have to watch out for infection and if my temperature goes up to 38 degrees, straight to hospital for some IV antibiotics.
This was the dilemma I had last week when my temp went up a little. Go to the local which has in the past had a dodgy ED department or go to the hospital where I used to work and be admitted to the ward that I used to work in!
I have since found out that my local ED is much improved. So this sets my mind at ease. And anyway I'm hoping I won't have to worry about that.
My hair is still firmly anchored in my head. Everyday when I hop in the shower and wash it I wonder when it will start to come out. Scalp has had some intermittent tenderness but quite mild and transient. Oh well I guess it will declare itself sooner or later. I am amassing a collection of hats, beanies and headscarves for the occasion. I even have a wig! A gift from a lovely friend :)
Saturday, 9 June 2012
Well. We are now Day 11 post cycle 1 of chemotherapy.
After the initial 2-3 days of nausea this week hasnt been too bad. There was a bit of queasiness after the nausea abated which then petered out.
My energy levels have been pretty good, of course Im not running any marathons but Monday morning I was able to sweep and mop the floors and do a general tidy up of our "sick house"
I did however feel as though I was brewing a cold, and considering the man and daughter number 1 have had revolting coughs, its not really surprising.
Tuesday night I felt a little off and my temperature started going up. Albeit slowly, but enough to make me panic. I am now obsessed with my temperature! If my temperature hit 38 degrees, I had to decide which hospital to go to.
Choice 1) the local hospital. Unfortunately I have had bad experiences with this place, both with myself and with my children. I didnt know if I could safely put my care in the hands of their emergency department which has screwed me around in the past.
Choice 2) the next bigger hospital. This is the place where I used to work as a cancer nurse. I would likely be admitted to one of two wards, both of which I have worked on and are staffed by my former colleagues and friends, one of which I am told currently has a norovirus outbreak.
Decisions decisions. Maybe I'll go to one of the city hospitals!
Thankfully my temperature hit 37.5 and then went down of its own accord.
The next day I went to my GP and got some antibiotics just in case.
On Thursday I saw my surgeon. I had to cancel my appointment with him last week as I was too crap after chemo to go in and see him. Also this has given him an opportunity to discuss my case at the breast meeting with the other clinicians.
So. The pathology report says that there are 2 ducts with DCIS close to the margin in the re-excision. They are within 1mm of the margin. This makes me nervous as obviously I worry about cells being left behind, and I am fully prepped for more surgery after chemo is finished.
The last time we were here, with involved margins, he tells me that surgery is the only treatment for DCIS.
Chemotherapy and radiotherapy doesnt touch it he says.
Cool. Im down with that. Cut that bad boy out!
Im planning my mastectomy, reduction of the other side and reconstruction.
New boobs!
Perky ones!
No bra!
Yee haa!
Hmm wonder if plastics man will do a tummy tuck while he's in there. ooooooh and thigh lipo as well!
Unfortunately my surgeon doesn't share my thoughts. Dammitalltohell!
It is the consensus of the Breast multidisciplinary meeting that the best option is to watch and wait. Regular follow ups with scans blah blah blah blah blah.
Fuck you and the horse you rode in on!
This is my initial thought. As far as I'm concerned, prevention is better than cure. And if you can prevent any rogue DCIS OR invasive cancer cells outside of that margin from coming back then I'd much rather that thankyouverymuch!
I really like my surgeon he is lovely, but I feel he is on the conservative side.
Again. Everyone wants to conserve my breast but me!
I want to go to the breast MDT and tell them. I dont want conservative, I want aggressive. Smash it! This is my body and my breast and it tried to kill me. I WANT IT GONE!
get it?
No they dont get it.
The studies show XYZ, 123 and ABC.
breast conservation and radiotherapy is better
you dont need a mastectomy.
blah blah blah blah.
I dont give a fuck.
I want it gone. And I wonder how Im going to get it?
I fear recurrence and having to head down this road anyway.
Just do it!
I am nervous and not happy with these results. I feel like decisions have been made with no thought of how I feel or what I want. I have played no part in this decision making. Is that fair? Has anyone considered what I want?
So the decision is to follow up in 6 months at the end of treatment with repeat scans. I will be monitored closely.
That should instil confidence and relief but it doesn't. If you're so confident why are you watching so closely?
On the way home, I think about second opinions. I decide I will wait and have a chat to my medical oncologist who I trust implicitly and the radiation oncologist. They will know how well any left behind cells will be treated with their death rays and jungle juice.
Its not a decision that I have to make now, I have 5 months of chemo to get through yet, so we have time to ask questions, research get a second surgical opinion if required and there is also the genetic testing to come back. I might have a gene or 2 and then both of those bad boys will be gone!
On the surface everyone is amazed at I am dealing with this. I look so well! I am so cheerful! I am strong.
I cant allow the darkness in.
But it creeps in occasionally.
Im not that strong.
Scratch the surface. Its soft under there.
It might be time to see a Clinical Psychologist.
After the initial 2-3 days of nausea this week hasnt been too bad. There was a bit of queasiness after the nausea abated which then petered out.
My energy levels have been pretty good, of course Im not running any marathons but Monday morning I was able to sweep and mop the floors and do a general tidy up of our "sick house"
I did however feel as though I was brewing a cold, and considering the man and daughter number 1 have had revolting coughs, its not really surprising.
Tuesday night I felt a little off and my temperature started going up. Albeit slowly, but enough to make me panic. I am now obsessed with my temperature! If my temperature hit 38 degrees, I had to decide which hospital to go to.
Choice 1) the local hospital. Unfortunately I have had bad experiences with this place, both with myself and with my children. I didnt know if I could safely put my care in the hands of their emergency department which has screwed me around in the past.
Choice 2) the next bigger hospital. This is the place where I used to work as a cancer nurse. I would likely be admitted to one of two wards, both of which I have worked on and are staffed by my former colleagues and friends, one of which I am told currently has a norovirus outbreak.
Decisions decisions. Maybe I'll go to one of the city hospitals!
Thankfully my temperature hit 37.5 and then went down of its own accord.
The next day I went to my GP and got some antibiotics just in case.
On Thursday I saw my surgeon. I had to cancel my appointment with him last week as I was too crap after chemo to go in and see him. Also this has given him an opportunity to discuss my case at the breast meeting with the other clinicians.
So. The pathology report says that there are 2 ducts with DCIS close to the margin in the re-excision. They are within 1mm of the margin. This makes me nervous as obviously I worry about cells being left behind, and I am fully prepped for more surgery after chemo is finished.
The last time we were here, with involved margins, he tells me that surgery is the only treatment for DCIS.
Chemotherapy and radiotherapy doesnt touch it he says.
Cool. Im down with that. Cut that bad boy out!
Im planning my mastectomy, reduction of the other side and reconstruction.
New boobs!
Perky ones!
No bra!
Yee haa!
Hmm wonder if plastics man will do a tummy tuck while he's in there. ooooooh and thigh lipo as well!
Unfortunately my surgeon doesn't share my thoughts. Dammitalltohell!
It is the consensus of the Breast multidisciplinary meeting that the best option is to watch and wait. Regular follow ups with scans blah blah blah blah blah.
Fuck you and the horse you rode in on!
This is my initial thought. As far as I'm concerned, prevention is better than cure. And if you can prevent any rogue DCIS OR invasive cancer cells outside of that margin from coming back then I'd much rather that thankyouverymuch!
I really like my surgeon he is lovely, but I feel he is on the conservative side.
Again. Everyone wants to conserve my breast but me!
I want to go to the breast MDT and tell them. I dont want conservative, I want aggressive. Smash it! This is my body and my breast and it tried to kill me. I WANT IT GONE!
get it?
No they dont get it.
The studies show XYZ, 123 and ABC.
breast conservation and radiotherapy is better
you dont need a mastectomy.
blah blah blah blah.
I dont give a fuck.
I want it gone. And I wonder how Im going to get it?
I fear recurrence and having to head down this road anyway.
Just do it!
I am nervous and not happy with these results. I feel like decisions have been made with no thought of how I feel or what I want. I have played no part in this decision making. Is that fair? Has anyone considered what I want?
So the decision is to follow up in 6 months at the end of treatment with repeat scans. I will be monitored closely.
That should instil confidence and relief but it doesn't. If you're so confident why are you watching so closely?
On the way home, I think about second opinions. I decide I will wait and have a chat to my medical oncologist who I trust implicitly and the radiation oncologist. They will know how well any left behind cells will be treated with their death rays and jungle juice.
Its not a decision that I have to make now, I have 5 months of chemo to get through yet, so we have time to ask questions, research get a second surgical opinion if required and there is also the genetic testing to come back. I might have a gene or 2 and then both of those bad boys will be gone!
On the surface everyone is amazed at I am dealing with this. I look so well! I am so cheerful! I am strong.
I cant allow the darkness in.
But it creeps in occasionally.
Im not that strong.
Scratch the surface. Its soft under there.
It might be time to see a Clinical Psychologist.
Monday, 4 June 2012
Tossing and turning.......
Well, that was a crap nights sleep!
I hate the way this disease has messed with everything.
I am bruised, scarred, sore, weakened. My life is upside down and inside out. I cant sleep when Im supposed to. I pop pills like there is no tomorrow.
F.U.C.K.E.D UP!
The port was giving me curry last night, woke me up in discomfort. I am slowly starting to hate this thing in my chest.
But! I am strong like Bull! These things are small pebbles on my road and I will overcome them.
I hate the way this disease has messed with everything.
I am bruised, scarred, sore, weakened. My life is upside down and inside out. I cant sleep when Im supposed to. I pop pills like there is no tomorrow.
F.U.C.K.E.D UP!
The port was giving me curry last night, woke me up in discomfort. I am slowly starting to hate this thing in my chest.
But! I am strong like Bull! These things are small pebbles on my road and I will overcome them.
Sunday, 3 June 2012
slowly slowly
Well its Monday morning 4:17 am.
Like I said. My sleep patterns are up the wazoo! I managed to get through most of yesterday without any anti nausea drugs, but required a nap in the afternoon and felt a bit crap after dinner so took some maxalon and loraz and had an early night.
Need to try and get back on the train to normal.
Poor old Rubes revisited the vomitron for 1 episode yesterday morning but was then hunky dory for the rest of the day. I wonder if it had anything to do with the 3 fundraising chocolate frogs she ate whilst mumma was in lala land on Saturday???
My port site still hurts which makes being comfortable difficult. In hindsight, I probably would have waited until after AC was finished to get the port so that I could get through the yuk yuks with one less thing to worry about. At the moment its another thorn in my side! Baha! (I think only cancer nurses or those who have a port might get that one!)
There have been a couple of dark moments over the last 72 hours. Nothing really bad but this kind of stuff really makes you realise how mortal you are. I can educate a patient on what they need to do to stay well through chemo from here to eternity. But living it is a whole different kettle of fish.
One highlight was a lovely little package from a friend I worked with on the cancer ward. She sent me some beautiful skin care and hair care products with no chemicals and parabens etc, just beautiful natural stuff. Im well on my way to hippy-dom, just need my Boobook house and we are set!
Funny, as she has told me she has a million wigs at her house, I thought at first it was a box of wigs!!! Love you gorgeous xx
Yesterday I made my first foray out into the wet world (up the shops) my poor husband panicked but knowing me he didnt argue too much. I felt a bit wobbly, like the way you do after a bout of gastro but I had to do it. Had to get out of the house that Ruby tells me smells like a hospital with sick people. Yeah, cant deny that one, it probably does.
Fresh air and rain on my face were beautiful. Up at the shops I see 3 of my lovely friends, 2 of which are also my breast care nurses! (most people only get 1 breast care nurse, I get the whole team! ;) We have a chat, I tell them how I have been going, show them my cracking scars and bruises, tell them my cannulation horror story and then I must push on as I feel my energy flagging.
I tool around the shop, leaning on a trolley, a complete scatterbrain, going back down aisles Ive already been down, not even sure of what I want!
Afer Ive finished I have to get out of there as I am stuffed. Get home and its back on the couch. Then some lunch then kippy time yet again.
What a life!
Like I said. My sleep patterns are up the wazoo! I managed to get through most of yesterday without any anti nausea drugs, but required a nap in the afternoon and felt a bit crap after dinner so took some maxalon and loraz and had an early night.
Need to try and get back on the train to normal.
Poor old Rubes revisited the vomitron for 1 episode yesterday morning but was then hunky dory for the rest of the day. I wonder if it had anything to do with the 3 fundraising chocolate frogs she ate whilst mumma was in lala land on Saturday???
My port site still hurts which makes being comfortable difficult. In hindsight, I probably would have waited until after AC was finished to get the port so that I could get through the yuk yuks with one less thing to worry about. At the moment its another thorn in my side! Baha! (I think only cancer nurses or those who have a port might get that one!)
There have been a couple of dark moments over the last 72 hours. Nothing really bad but this kind of stuff really makes you realise how mortal you are. I can educate a patient on what they need to do to stay well through chemo from here to eternity. But living it is a whole different kettle of fish.
One highlight was a lovely little package from a friend I worked with on the cancer ward. She sent me some beautiful skin care and hair care products with no chemicals and parabens etc, just beautiful natural stuff. Im well on my way to hippy-dom, just need my Boobook house and we are set!
Funny, as she has told me she has a million wigs at her house, I thought at first it was a box of wigs!!! Love you gorgeous xx
Yesterday I made my first foray out into the wet world (up the shops) my poor husband panicked but knowing me he didnt argue too much. I felt a bit wobbly, like the way you do after a bout of gastro but I had to do it. Had to get out of the house that Ruby tells me smells like a hospital with sick people. Yeah, cant deny that one, it probably does.
Fresh air and rain on my face were beautiful. Up at the shops I see 3 of my lovely friends, 2 of which are also my breast care nurses! (most people only get 1 breast care nurse, I get the whole team! ;) We have a chat, I tell them how I have been going, show them my cracking scars and bruises, tell them my cannulation horror story and then I must push on as I feel my energy flagging.
I tool around the shop, leaning on a trolley, a complete scatterbrain, going back down aisles Ive already been down, not even sure of what I want!
Afer Ive finished I have to get out of there as I am stuffed. Get home and its back on the couch. Then some lunch then kippy time yet again.
What a life!
Friday, 1 June 2012
Day 3 continued
I feel blah.
I'm not really sick, nor am I 100%. Its such a weird in between feeling. When I woke up earlier I felt ok. I pottered around ok and had a coffee and cleaned up the kitchen but have slowly slid downhill since then.
Ive slept intermittently on the couch. Finally had a shower around lunch time and had a couple of rice crackers for lunch. The thought of real food or a meal turns my stomach. I crave salty stuff and fizzy water.
Jasmines step mum brought her home from netball and her first umpiring session. I was sad I wasnt there to see her umpire her first game. Ruby has been my couch mate today, recovering from her stint as the vomitron last night.
Its cold and wet and yuk outside so I feel completely justified on my well worn position on the couch.
I'm not really sick, nor am I 100%. Its such a weird in between feeling. When I woke up earlier I felt ok. I pottered around ok and had a coffee and cleaned up the kitchen but have slowly slid downhill since then.
Ive slept intermittently on the couch. Finally had a shower around lunch time and had a couple of rice crackers for lunch. The thought of real food or a meal turns my stomach. I crave salty stuff and fizzy water.
Jasmines step mum brought her home from netball and her first umpiring session. I was sad I wasnt there to see her umpire her first game. Ruby has been my couch mate today, recovering from her stint as the vomitron last night.
Its cold and wet and yuk outside so I feel completely justified on my well worn position on the couch.
Chemo time
I am wound up tighter than a spring on chemo day.
I didn't sleep a wink the night before thanks to anesthetic and the short sleep I did get resulted in dreams of infected cannula sites.
Yeah! Just what I need before I get some drugs that will suppress my immune system.
So I'm quietly working myself into a state wanting to get it over and done with.
I finally pop half a lorazepam and this helps immensely. Thank god for benzo's and opioids!
We arrive at the clinic and they are chockas so we have a little wait. The boss comes and gets us and we have education to begin with. This is more for my husband and daughters benefit than mine as I have given this education myself a million times.
After this I see a trials nurse who is going to take some blood for a trial measuring cardiac function. Then we get down to business. They take down the dressing on my accessed port. Is still as sore as a bastard but not as bad as yesterday thank god!
The initial pull back doesn't yield any blood so they give it a little flush and off she goes. The bloods for my trial and also for my genetic testing are done and sent. Then the premeds are given to stop me from feeling sick and then the chemo.
It's kinda strange receiving chemo. Nothing happens when it's going in, it's the aftermath that is the teller. Getting it as easy as drinking a glass of water.
Once were all done they flush, lock and deaccess my port. Aaaaah that feels so much better. And off I go with my box of goodies.
Once I get home I have a little sleep as I am exhausted from the last couple of days.
When I wake up I feel not so great. The yuk yuks have hit me. Wow that was quick! I didn't expect anything until tomorrow!
I start going through my little arsenal that my lovely daughter has arranged for me in a little box. Hmmm we'll star with the maxalon I think. I don't feel like dinner but I have a little potato and a couple of pieces of broccoli for nourishment.
My beautiful amazing children have started a fundraising page on everyday heroes to raise money for breast cancer research. I cant believe how awesome they are. They're going to shave their heads in support of me! I am in awe of them. I would cry but feel quite emotionless at the moment. they are so special and I am so lucky to have them. I thank god for my beautiful girls and my wonderful husband. The give me something to live for. This is their gorgeous website. 4 baldies! yeah
http://www.everydayhero.com.au/the3sisters
The nausea waxes and wanes. I try ginger beer, ginger and lemon tea and finally a stemetil suppository (thats right, up the butt) and half a loraz.
My husband makes me a bit of toast with vegemite and that helps a little. I take the other half of loraz and try and get some sleep.
Day 2
I feel about the same, like a cross between being hungover and morning sickness. Not enough to make me vomit or be bed bound but enough to make you feel like crap.
I have a coffee and some toast and all my meds including some tasty bowel prep which is absolutely awful under normal circumstances, let alone when you are feeling nauseated but I manage to get it dow. I havent gone since port day so today is day 3. Gotta get the mail moving!
My husband takes the kids of to school and I lay down on the couch and have a 2 hour nap! Eldest wakes me up by feeling my head. She says my face is flushed so we check my temp, all good, must be from chemo. I spend the majority of the day on the couch in and out of waves of nausea. Get a few wellbeing phone calls from friends/nurses. Still no joy from the poopy department which Im sure is not helping the nausea.
I get a phone call from the school, Ruby is sick and vomiting. They have tried everyone on the list and have gotten through to Rubys step mum. She is going to get Rubes and bring her home. Thank god for angels. I dont honestly know how i would have gone doing it. Obviously if push came to shove I would have to but Im glad it didnt come to that. So poor old Ruby comes home and vomits all afternoon. The poor little lamb. I know exactly how she feels except that Im not vomiting! So we set her up with her bowl and her bag and her antibacterial wipes and hand sanitiser.
What a pair we are!!!
I have another little kip and a little care package comes from my lovely nursey friends with all sorts of pills and suppositories and a wee little birdie on top.
Amazing the things that cheer you up!
Ruby gets a maxalon which stops the voms and allows her to get a decent sleep.
I pop a few more pills and eat a little dinner then back to bed we go. This time with a full loraz on board.
Day 3
Im up at the crack of sparrow fart, still a little sicky. Its way too early to get up but I dont really feel like going back to sleep. My sleep patterns are up the wazoo at the moment. So what else is a girl to do at 3:30 am? whack in a couple of suppositories and see how we go! So I do and then go back to bed and wait for them to do their job. 20 mins later tada! We have some action. Hooray! its not 3 days worth but its a start. Back to bed again lets see if there are any zzz's waiting for me to catch them. Unfortunately not so I get up around 5 ish pop my morning meds including an anti nausea and have my coffee.
Ruby wakes up and is much better thank god, I still feel in that middle land between hungover and pregnant.
The coffee does its trick and we have a bit more joy in the mail delivery department. Its funny the things that impress you when your world is turned inside out.
I didn't sleep a wink the night before thanks to anesthetic and the short sleep I did get resulted in dreams of infected cannula sites.
Yeah! Just what I need before I get some drugs that will suppress my immune system.
So I'm quietly working myself into a state wanting to get it over and done with.
I finally pop half a lorazepam and this helps immensely. Thank god for benzo's and opioids!
We arrive at the clinic and they are chockas so we have a little wait. The boss comes and gets us and we have education to begin with. This is more for my husband and daughters benefit than mine as I have given this education myself a million times.
After this I see a trials nurse who is going to take some blood for a trial measuring cardiac function. Then we get down to business. They take down the dressing on my accessed port. Is still as sore as a bastard but not as bad as yesterday thank god!
The initial pull back doesn't yield any blood so they give it a little flush and off she goes. The bloods for my trial and also for my genetic testing are done and sent. Then the premeds are given to stop me from feeling sick and then the chemo.
It's kinda strange receiving chemo. Nothing happens when it's going in, it's the aftermath that is the teller. Getting it as easy as drinking a glass of water.
Once were all done they flush, lock and deaccess my port. Aaaaah that feels so much better. And off I go with my box of goodies.
Once I get home I have a little sleep as I am exhausted from the last couple of days.
When I wake up I feel not so great. The yuk yuks have hit me. Wow that was quick! I didn't expect anything until tomorrow!
I start going through my little arsenal that my lovely daughter has arranged for me in a little box. Hmmm we'll star with the maxalon I think. I don't feel like dinner but I have a little potato and a couple of pieces of broccoli for nourishment.
My beautiful amazing children have started a fundraising page on everyday heroes to raise money for breast cancer research. I cant believe how awesome they are. They're going to shave their heads in support of me! I am in awe of them. I would cry but feel quite emotionless at the moment. they are so special and I am so lucky to have them. I thank god for my beautiful girls and my wonderful husband. The give me something to live for. This is their gorgeous website. 4 baldies! yeah
http://www.everydayhero.com.au/the3sisters
The nausea waxes and wanes. I try ginger beer, ginger and lemon tea and finally a stemetil suppository (thats right, up the butt) and half a loraz.
My husband makes me a bit of toast with vegemite and that helps a little. I take the other half of loraz and try and get some sleep.
Day 2
I feel about the same, like a cross between being hungover and morning sickness. Not enough to make me vomit or be bed bound but enough to make you feel like crap.
I have a coffee and some toast and all my meds including some tasty bowel prep which is absolutely awful under normal circumstances, let alone when you are feeling nauseated but I manage to get it dow. I havent gone since port day so today is day 3. Gotta get the mail moving!
My husband takes the kids of to school and I lay down on the couch and have a 2 hour nap! Eldest wakes me up by feeling my head. She says my face is flushed so we check my temp, all good, must be from chemo. I spend the majority of the day on the couch in and out of waves of nausea. Get a few wellbeing phone calls from friends/nurses. Still no joy from the poopy department which Im sure is not helping the nausea.
I get a phone call from the school, Ruby is sick and vomiting. They have tried everyone on the list and have gotten through to Rubys step mum. She is going to get Rubes and bring her home. Thank god for angels. I dont honestly know how i would have gone doing it. Obviously if push came to shove I would have to but Im glad it didnt come to that. So poor old Ruby comes home and vomits all afternoon. The poor little lamb. I know exactly how she feels except that Im not vomiting! So we set her up with her bowl and her bag and her antibacterial wipes and hand sanitiser.
What a pair we are!!!
I have another little kip and a little care package comes from my lovely nursey friends with all sorts of pills and suppositories and a wee little birdie on top.
Amazing the things that cheer you up!
Ruby gets a maxalon which stops the voms and allows her to get a decent sleep.
I pop a few more pills and eat a little dinner then back to bed we go. This time with a full loraz on board.
Day 3
Im up at the crack of sparrow fart, still a little sicky. Its way too early to get up but I dont really feel like going back to sleep. My sleep patterns are up the wazoo at the moment. So what else is a girl to do at 3:30 am? whack in a couple of suppositories and see how we go! So I do and then go back to bed and wait for them to do their job. 20 mins later tada! We have some action. Hooray! its not 3 days worth but its a start. Back to bed again lets see if there are any zzz's waiting for me to catch them. Unfortunately not so I get up around 5 ish pop my morning meds including an anti nausea and have my coffee.
Ruby wakes up and is much better thank god, I still feel in that middle land between hungover and pregnant.
The coffee does its trick and we have a bit more joy in the mail delivery department. Its funny the things that impress you when your world is turned inside out.
Post port, pre chemo
So its Thursday morning, the day after my port a cath insertion, day of chemotherapy.
I have so many mixed emotions today, the major one being anxiety.
Post port insertion I am sore! Have been smashing double Endone plus panadol and breakthrough Endone as well!
This morning was much better, managed with 1 Endone and 2 panadol. Still a little tender but better than last night.
Did not sleep a wink overnight, this appears to be the common theme with me and anaesthetics. Should probably have taken a lorazepam, but as I was Endoned up to the eyeballs, was a little nervous about taking a benzo on top of all that!
Yesterday was a bit shit. I will think long and hard before having a procedure in the public again.
After waiting in the cold hard waiting room for 2 hours, they finally took me into the day surgery unit where I got changed (and had to wear their awful undies) and barely had a chance to say goodbye to my loves before they whisked me into theatre.
Waiting in the theatre bay I got all emotional and had a cry, but tried not to let anyone see. Not that anyone really took that much notice of me, and anyway they're theatre nurses. Do they know how to deal with a conscious patient?
A nurse comes and checks me off and doesnt mention the tears, (in regards to above question, I think not) we whizz off to the pre-theatre room.
A medical student comes to put a cannula in. I honestly do not think she has ever done this before. For some reason I am as compliant as a lamb being put to slaughter and say nothing.
I look back at myself lying complacently in the bed while she fumbles around with equipment she obviously knows sweet fanny adams about and I scream at myself. "Sharpen up bitch! Take your arm away and ask to wait for the anaesthetist!" Jesus what was wrong with me yesterday!
The whole procedure was a farce from beginning to end.
She looks for a vein without a tourniquet. Strike One. you aint gonna find nuthin that way my friend
She fumbles with the tourniquet, and when finally figures out how to do it doesnt tighten very much. Strike Two!
Then we start the hunting game. Up and down the arm we go. I clench my fist, I drop my arm over the bed in an attempt to help her as I can sense this is going to be bad.
She goes for the cubital fossa (crook of the arm, the lazy cannulators spot)
And Strike Three! This is where I should pull my arm away but I am rabbit in headlights. She cleans my arm (thank god for small mercy's) but then pulls the uncovered cannula from the kidney dish.
So this little steel and plastic tube is no longer sterile and she tries to shove it in my vein. Why did I not stop her? Why did I not pull my arm away and say excuse me that is no longer sterile and I dont think you should be using it.
What is wrong with me!
She fails at her attempt but pushes the cannula in anyway. Tries to flush it but surprise surprise it wont work. After fart assing around for another 5 minutes I take off the tourniquet and ask her to remove the cannula. She says oh it might start working. And this is when I come to life and say "No if it doesnt work now its not going to and it needs to come out." She takes it out. Thankfully, and scurries away like a little mouse.
Now Im all for learning, we all had to learn somewhere. But skills such as these should be be done under the tutelage of an expert. Its not see one do one teach one. Cannulation is an art. As a nurse we have to do a course then be watched to be deemed competent. As a medical student, you watch someone else then off you go on your own. Confident or not. Proficient or not.
Thankfully after that the anaesthetist comes in and we get down to business. Cannula in Yay!
Midaz given woooo helloooooo! as a lovely friend of mine once said, i am all sparkly headed!
we move into the OT and I dont remember a hell of a lot. Except for waking up in in pain.
Oh mofo. This one hurts.
yeeeeeowch!
the fentanyl doesnt cover it.
2 Endone helps though.
I am comfortable enough to go back to Day surgery and my nurse there is lovely. She brings me a couple of panadol to help with the endone and it does.
I eat, get chenged, see my breast care nurse then go home. Its been another long anaesthetic filled wednesday.
The pain is awful and all night I am on endone and panadol. And I dont sleep a wink!
I have so many mixed emotions today, the major one being anxiety.
Post port insertion I am sore! Have been smashing double Endone plus panadol and breakthrough Endone as well!
This morning was much better, managed with 1 Endone and 2 panadol. Still a little tender but better than last night.
Did not sleep a wink overnight, this appears to be the common theme with me and anaesthetics. Should probably have taken a lorazepam, but as I was Endoned up to the eyeballs, was a little nervous about taking a benzo on top of all that!
Yesterday was a bit shit. I will think long and hard before having a procedure in the public again.
After waiting in the cold hard waiting room for 2 hours, they finally took me into the day surgery unit where I got changed (and had to wear their awful undies) and barely had a chance to say goodbye to my loves before they whisked me into theatre.
Waiting in the theatre bay I got all emotional and had a cry, but tried not to let anyone see. Not that anyone really took that much notice of me, and anyway they're theatre nurses. Do they know how to deal with a conscious patient?
A nurse comes and checks me off and doesnt mention the tears, (in regards to above question, I think not) we whizz off to the pre-theatre room.
A medical student comes to put a cannula in. I honestly do not think she has ever done this before. For some reason I am as compliant as a lamb being put to slaughter and say nothing.
I look back at myself lying complacently in the bed while she fumbles around with equipment she obviously knows sweet fanny adams about and I scream at myself. "Sharpen up bitch! Take your arm away and ask to wait for the anaesthetist!" Jesus what was wrong with me yesterday!
The whole procedure was a farce from beginning to end.
She looks for a vein without a tourniquet. Strike One. you aint gonna find nuthin that way my friend
She fumbles with the tourniquet, and when finally figures out how to do it doesnt tighten very much. Strike Two!
Then we start the hunting game. Up and down the arm we go. I clench my fist, I drop my arm over the bed in an attempt to help her as I can sense this is going to be bad.
She goes for the cubital fossa (crook of the arm, the lazy cannulators spot)
And Strike Three! This is where I should pull my arm away but I am rabbit in headlights. She cleans my arm (thank god for small mercy's) but then pulls the uncovered cannula from the kidney dish.
So this little steel and plastic tube is no longer sterile and she tries to shove it in my vein. Why did I not stop her? Why did I not pull my arm away and say excuse me that is no longer sterile and I dont think you should be using it.
What is wrong with me!
She fails at her attempt but pushes the cannula in anyway. Tries to flush it but surprise surprise it wont work. After fart assing around for another 5 minutes I take off the tourniquet and ask her to remove the cannula. She says oh it might start working. And this is when I come to life and say "No if it doesnt work now its not going to and it needs to come out." She takes it out. Thankfully, and scurries away like a little mouse.
Now Im all for learning, we all had to learn somewhere. But skills such as these should be be done under the tutelage of an expert. Its not see one do one teach one. Cannulation is an art. As a nurse we have to do a course then be watched to be deemed competent. As a medical student, you watch someone else then off you go on your own. Confident or not. Proficient or not.
Thankfully after that the anaesthetist comes in and we get down to business. Cannula in Yay!
Midaz given woooo helloooooo! as a lovely friend of mine once said, i am all sparkly headed!
we move into the OT and I dont remember a hell of a lot. Except for waking up in in pain.
Oh mofo. This one hurts.
yeeeeeowch!
the fentanyl doesnt cover it.
2 Endone helps though.
I am comfortable enough to go back to Day surgery and my nurse there is lovely. She brings me a couple of panadol to help with the endone and it does.
I eat, get chenged, see my breast care nurse then go home. Its been another long anaesthetic filled wednesday.
The pain is awful and all night I am on endone and panadol. And I dont sleep a wink!
Tuesday, 29 May 2012
Week 3!
Well it's been 3 weeks since I hopped on this crazy ass roller coaster ride.
So far I've had 2 surgeries (not including the fine needle aspiration x2 and core biopsy x2 under local anaesthetic), endless doctors appointments, good news - clear sentinel node and not so good news - involved margins resulting in second surgery.
And so we have arrived at week 3.
The results of my second surgery have come back with close margins. So DCIS was found close to the edge of the second excision. What this means for me in regards to further surgery I don't know as I don't see the surgeon until Friday.
My oncologist however wants to smash on with treatment as I am HER2 positive which means my tumour is more aggresive than one that is HER2 negative. Surgeon concurs and we can have further surgery afterwards if required. I'm quite happy for him to take it off completely.
Everyone keeps telling me it's better not to lose your breast but I really honestly and truly don't care. After 2 surgeries and still having the possibility of having more and DCIS left behind I would rather it gone and be done with it.
I'm all for reconstruction, was looking at a reduction anyway so what is the big deal?
I'm 39 years and 11 months old, I've had and breast fed 3 kids, have lost and put on weight so really they ain't much chop and I'll end up with a better pair!
It irks me when people tell me I need to preserve my breast. NO actually I don't. I need to preserve my life and my sanity.
Why do people assume that because some people react so strongly to losing their breast(s) that everyone is automatically like that? Same with losing your hair! I couldn't give a toss.
Take my boobs, Shave my head.
Whatever it takes.
I would eat dog shit if it meant a long and happy life with my family and loved ones.
So Monday morning the onc appointment looms large. I tell my husband if the margins are still involved and I have to go back to surgery I'm gonna go postal on their asses.
Riot at local hospital and I'm holding you hostage! I can see the headlines now. "A local oncology nurse has run riot through the local hospital after being told she would need to return for breast cancer surgery for a third time. The nurse smashed windows, set fire to rubbish bins and overturned tables and chairs in frightening attack. A volunteer in the local yogurt shop stated "she was out of control!" she is currently holding her husband hostage demanding an operating room and her surgeon to come and operate now. Hostage negotiators are currently trying to reason with her." :)
They narrowly missed this scenario with allowing treatment to start this week!
So we're all booked to start Wednesday and then this morning my oncologist phones me to tell me I'm booked in to have a port a Cath inserted in theatre tomorrow because they had a cancellation.
So chemo is now Thursday.
Third time lucky!!!
Mama Mia!
Anaesthetic Wednesday.
Here we go again!!!
So far I've had 2 surgeries (not including the fine needle aspiration x2 and core biopsy x2 under local anaesthetic), endless doctors appointments, good news - clear sentinel node and not so good news - involved margins resulting in second surgery.
And so we have arrived at week 3.
The results of my second surgery have come back with close margins. So DCIS was found close to the edge of the second excision. What this means for me in regards to further surgery I don't know as I don't see the surgeon until Friday.
My oncologist however wants to smash on with treatment as I am HER2 positive which means my tumour is more aggresive than one that is HER2 negative. Surgeon concurs and we can have further surgery afterwards if required. I'm quite happy for him to take it off completely.
Everyone keeps telling me it's better not to lose your breast but I really honestly and truly don't care. After 2 surgeries and still having the possibility of having more and DCIS left behind I would rather it gone and be done with it.
I'm all for reconstruction, was looking at a reduction anyway so what is the big deal?
I'm 39 years and 11 months old, I've had and breast fed 3 kids, have lost and put on weight so really they ain't much chop and I'll end up with a better pair!
It irks me when people tell me I need to preserve my breast. NO actually I don't. I need to preserve my life and my sanity.
Why do people assume that because some people react so strongly to losing their breast(s) that everyone is automatically like that? Same with losing your hair! I couldn't give a toss.
Take my boobs, Shave my head.
Whatever it takes.
I would eat dog shit if it meant a long and happy life with my family and loved ones.
So Monday morning the onc appointment looms large. I tell my husband if the margins are still involved and I have to go back to surgery I'm gonna go postal on their asses.
Riot at local hospital and I'm holding you hostage! I can see the headlines now. "A local oncology nurse has run riot through the local hospital after being told she would need to return for breast cancer surgery for a third time. The nurse smashed windows, set fire to rubbish bins and overturned tables and chairs in frightening attack. A volunteer in the local yogurt shop stated "she was out of control!" she is currently holding her husband hostage demanding an operating room and her surgeon to come and operate now. Hostage negotiators are currently trying to reason with her." :)
They narrowly missed this scenario with allowing treatment to start this week!
So we're all booked to start Wednesday and then this morning my oncologist phones me to tell me I'm booked in to have a port a Cath inserted in theatre tomorrow because they had a cancellation.
So chemo is now Thursday.
Third time lucky!!!
Mama Mia!
Anaesthetic Wednesday.
Here we go again!!!
Thursday, 24 May 2012
The simple things
I wake this morning full of thoughts of what I have to do today.
Thankfully none of them have anything to do with cancer.
I have to take some permission slips to the school for miss 13 and take a jacket back to David Jones for the man.
Blissfully normal.
I am actually full of love this morning. For everyone in my life that has wished me well and chosen to accompany me on this journey. (and no I havent had any Endone yet!)
Friends of my mum's and relatives of their's are saying prayers and lighting candles for me. It blows me away. I am ever grateful and thankful to have such support and love.
Its so cliched but so true how something like this makes you reassess the important things in life.
Material things mean nothing. Who cares where you live, what you wear, what kind of car you drive, what your latest handbag is. The universe doesnt. God doesnt. No amount of money can save you.
4 weeks ago I wanted to move into the city into a little funky terrace and have that inner city lifestyle.
Now I cant get far enough away.
I want clean air and open spaces not pollution and rat race.
I want to be an organic veg eating hippy not a city slicker choking on car exhaust fumes.
and
I dont want to work in cancer.
Cancer has been my 8 hours a day 5 days a week for the past 12 years. And I have enjoyed it. Ive enjoyed becoming an expert in cancer care, making people laugh and giving people comfort.
Now that cancer is my own personal friend I dont know if I can return to that world.
I dont want to eat, live, breathe, sleep, dream cancer.
I want to help people with cancer, but on my terms.
I want my 8 hours a day to be filled with beauty not disease.
I want to work in a little florist shop or a Peter Alexander store with pretty things and happy smiling people.
I want to be an advocate and a spokesperson and support person for cancer patients in my time.
Life is precious. Love it, live it, cherish it.
Thankfully none of them have anything to do with cancer.
I have to take some permission slips to the school for miss 13 and take a jacket back to David Jones for the man.
Blissfully normal.
I am actually full of love this morning. For everyone in my life that has wished me well and chosen to accompany me on this journey. (and no I havent had any Endone yet!)
Friends of my mum's and relatives of their's are saying prayers and lighting candles for me. It blows me away. I am ever grateful and thankful to have such support and love.
Its so cliched but so true how something like this makes you reassess the important things in life.
Material things mean nothing. Who cares where you live, what you wear, what kind of car you drive, what your latest handbag is. The universe doesnt. God doesnt. No amount of money can save you.
4 weeks ago I wanted to move into the city into a little funky terrace and have that inner city lifestyle.
Now I cant get far enough away.
I want clean air and open spaces not pollution and rat race.
I want to be an organic veg eating hippy not a city slicker choking on car exhaust fumes.
and
I dont want to work in cancer.
Cancer has been my 8 hours a day 5 days a week for the past 12 years. And I have enjoyed it. Ive enjoyed becoming an expert in cancer care, making people laugh and giving people comfort.
Now that cancer is my own personal friend I dont know if I can return to that world.
I dont want to eat, live, breathe, sleep, dream cancer.
I want to help people with cancer, but on my terms.
I want my 8 hours a day to be filled with beauty not disease.
I want to work in a little florist shop or a Peter Alexander store with pretty things and happy smiling people.
I want to be an advocate and a spokesperson and support person for cancer patients in my time.
Life is precious. Love it, live it, cherish it.
Wednesday, 23 May 2012
0122 hours
Post op.
cant sleep.
headache, sore boob.
waiting for endone and panadol to kick in.
Re-excision-tick!
Hormone receptors-tick!
we are ER/PR and HER 2 positive.
what does this mean? It means that my tumour has oestrogen and progesterone hormone receptors on it so that the hormones in my body make it grow and it also is sensitive to human epidermal growth factor (HER 2) which also makes it grow.
So to prevent relapse (either in the same breast) or in god forbid another area in addition to chemotherapy I will also receive Herceptin (to block the HER 2) and some kind of anti hormonal drug: tamoxifen or zoladex which will push me into menopause. yay?
To be honest I really wont miss my periods or ovulating as it is my monthly curse of ovulation pain, bloating, nausea and the occasional cyst and then pain, pain and pain of menstruation.
Are they symptoms of menopause worse? I don't know because Ive never experienced it!
At least I will have a quick cool down, just by whipping off the head gear!
Time to get a wee fan methinks!
So because of the Herceptin which lasts for 12 months, I will need to think about my veins which will probably not hold up under the pressure.
Time for some permanent venous access.
Ive decided to go for a port a cath which sits under the skin in your chest and is accessed by a needle when required. I dont really want a PICC line hanging out of my arm for 12 months (if it actually ever lasted that long) because number 1 you cant swim with it in, and I will be having Herceptin over summer, and number 2 I dont want it hanging out of my arm for 12 months.
So port it is.
Problem is its another surgical procedure.
I dont like surgery! But we will do what we must. Swallow our discomfort and push it away. Stock up on endone cos its gonna hurt! which by the way it appears I am not allergic to as I have been smashing it for the past few days!
Just waiting now for confirmation on the port insertion and starting chemo.
Freight train hasn't slowed just yet.
cant sleep.
headache, sore boob.
waiting for endone and panadol to kick in.
Re-excision-tick!
Hormone receptors-tick!
we are ER/PR and HER 2 positive.
what does this mean? It means that my tumour has oestrogen and progesterone hormone receptors on it so that the hormones in my body make it grow and it also is sensitive to human epidermal growth factor (HER 2) which also makes it grow.
So to prevent relapse (either in the same breast) or in god forbid another area in addition to chemotherapy I will also receive Herceptin (to block the HER 2) and some kind of anti hormonal drug: tamoxifen or zoladex which will push me into menopause. yay?
To be honest I really wont miss my periods or ovulating as it is my monthly curse of ovulation pain, bloating, nausea and the occasional cyst and then pain, pain and pain of menstruation.
Are they symptoms of menopause worse? I don't know because Ive never experienced it!
At least I will have a quick cool down, just by whipping off the head gear!
Time to get a wee fan methinks!
So because of the Herceptin which lasts for 12 months, I will need to think about my veins which will probably not hold up under the pressure.
Time for some permanent venous access.
Ive decided to go for a port a cath which sits under the skin in your chest and is accessed by a needle when required. I dont really want a PICC line hanging out of my arm for 12 months (if it actually ever lasted that long) because number 1 you cant swim with it in, and I will be having Herceptin over summer, and number 2 I dont want it hanging out of my arm for 12 months.
So port it is.
Problem is its another surgical procedure.
I dont like surgery! But we will do what we must. Swallow our discomfort and push it away. Stock up on endone cos its gonna hurt! which by the way it appears I am not allergic to as I have been smashing it for the past few days!
Just waiting now for confirmation on the port insertion and starting chemo.
Freight train hasn't slowed just yet.
there is beauty is in every day
sun streaming through your window
the light touch of breeze on your skin
rough bark on a tree
iridescent feathers on a bird
innocence of small children
helping hands given to those in need
art on a wall
music in your ears giving you goosebumps
love of another
selfless acts
ocean waves
storm clouds in formation
rain on your roof
washing away your cares
sun glistening on wet leaves
the smell after a rain storm
sun streaming through your window
the light touch of breeze on your skin
rough bark on a tree
iridescent feathers on a bird
innocence of small children
helping hands given to those in need
art on a wall
music in your ears giving you goosebumps
love of another
selfless acts
ocean waves
storm clouds in formation
rain on your roof
washing away your cares
sun glistening on wet leaves
the smell after a rain storm
Tuesday, 22 May 2012
Bit sore today
Wound under my arm is swollen bruised and sore and my breast feels as though needles are shooting through it but only when it sloshes around.
This unfortunately happens quite often as they are meaty Beaty big and bouncy!
Caught up with an old work mate/friend who I hadn't caught up with for ages. She had just had wisdom teeth surgery so we compared battle stories.
Prepping for surgery tomorrow (again) the official pathology report came back, lymph nodes are clear! Yay! But the margins are not. 1 margin is very close and one has DCIS in it.
*non medicos*
DCIS stands for ductal carcinoma in situ. It is basically cancer cells of the milk ducts but they are all still contained within in the duct. When they spill out of the duct into the breast tissue surrounding the duct this is called invasive ductal carcinoma. My tumor was a mixture of both but DCIS was found at the edge of the tissue taken. So essentially the tumour is gone, there are just a couple of seeds left behind which need to be removed.
So back we go!
I told him to feel free to take whatever he needed including the whole thing.
My life is far more important to me than a breast.
I can get a new, probably better looking one down the track!
And a matcher on the other side. I like the idea of having perky boobs for the first time in my life in my 40's!
While your there my friend, a quick tuck on the belly and some lipo on the thighs wouldn't go astray! Cheers!
This unfortunately happens quite often as they are meaty Beaty big and bouncy!
Caught up with an old work mate/friend who I hadn't caught up with for ages. She had just had wisdom teeth surgery so we compared battle stories.
Prepping for surgery tomorrow (again) the official pathology report came back, lymph nodes are clear! Yay! But the margins are not. 1 margin is very close and one has DCIS in it.
*non medicos*
DCIS stands for ductal carcinoma in situ. It is basically cancer cells of the milk ducts but they are all still contained within in the duct. When they spill out of the duct into the breast tissue surrounding the duct this is called invasive ductal carcinoma. My tumor was a mixture of both but DCIS was found at the edge of the tissue taken. So essentially the tumour is gone, there are just a couple of seeds left behind which need to be removed.
So back we go!
I told him to feel free to take whatever he needed including the whole thing.
My life is far more important to me than a breast.
I can get a new, probably better looking one down the track!
And a matcher on the other side. I like the idea of having perky boobs for the first time in my life in my 40's!
While your there my friend, a quick tuck on the belly and some lipo on the thighs wouldn't go astray! Cheers!
Monday, 21 May 2012
Wah Wah time over
Time to be thankful for what I have.
The glass is half fully friends.
I am still blessed and very very lucky.
There are those not as lucky as me and my heart, love and wishes goes out to them.
Sunday, 20 May 2012
Fuck You Cancer
Not happy.
Saw the oncologist today. Report from surgery isnt back yet, but being the proactive awesome person she is, she gave the pathologist a call and had a little chat.
On visual inspection nodes still clear BUT waiting for staining to come through so that may change. (fingers crossed we remain with the status quo thankyou very much!)
Tumour 30mm with involved margins.
Fuck.
Fuck fuck fuckity fuck.
This means there are tumour cells at the edge of the sample that they took.
Explanation for non medical types.
When resecting something like this, the surgeon will aim to get a 0.5-1cm margin of clear tissue around the tumour in order to ensure they are getting it all.
The pathologist will then look at it under his microscope to see if there are any cancer cells in that margin.
Any scattered cells found too close to the edge in that margin could mean that there are cancer cells left behind.
The bottom line means more surgery.
NOT HAPPY!
So back to see Le Surgeon this arvo to discuss more surgery. Yay me.
Im not angry at him, he does his job based on what he can see and feel and what is on the scans. Its not uncommon to miss microscopic cells. Im just cranky that its happened this time.
But as I write this I realise that I have a lot to be thankful for.
I have an awesome team looking out for me.
I have the most amazing network of family and friends thinking good thoughts and offering to help me.
Thankyou Thankyou Thankyou.
pothole in the road.
we will navigate this.
its all good in the hood
Saw the oncologist today. Report from surgery isnt back yet, but being the proactive awesome person she is, she gave the pathologist a call and had a little chat.
On visual inspection nodes still clear BUT waiting for staining to come through so that may change. (fingers crossed we remain with the status quo thankyou very much!)
Tumour 30mm with involved margins.
Fuck.
Fuck fuck fuckity fuck.
This means there are tumour cells at the edge of the sample that they took.
Explanation for non medical types.
When resecting something like this, the surgeon will aim to get a 0.5-1cm margin of clear tissue around the tumour in order to ensure they are getting it all.
The pathologist will then look at it under his microscope to see if there are any cancer cells in that margin.
Any scattered cells found too close to the edge in that margin could mean that there are cancer cells left behind.
The bottom line means more surgery.
NOT HAPPY!
So back to see Le Surgeon this arvo to discuss more surgery. Yay me.
Im not angry at him, he does his job based on what he can see and feel and what is on the scans. Its not uncommon to miss microscopic cells. Im just cranky that its happened this time.
But as I write this I realise that I have a lot to be thankful for.
I have an awesome team looking out for me.
I have the most amazing network of family and friends thinking good thoughts and offering to help me.
Thankyou Thankyou Thankyou.
pothole in the road.
we will navigate this.
its all good in the hood
Friday, 18 May 2012
Strange days indeed
It's 11 days since diagnosis and day 3 postop.
I'm still in an element of disbelief.
Despite the incision under my arm and the wound on my breast. Despite the blue stain and bruising. Despite my little pink arm pillow and the fact my mum is here.
I still am in shock!
I am cancer nurse
Not cancer patient!
Somewere someone fucked up. They put the wrong page in my file.
I want to call the karmic file keepers and sort this shit out once and for all.
I don't have their number. I don't know where they keep their files.
And if they took it out of my file would it have to go into someone else's? I would hate to think I gave this to someone else just because I didn't want it. Someone who maybe couldn't cope with it. Someone who didn't have the support I have. Or the access to the medical care and insider knowledge I have.
Still it seems surreal. Like a bad joke.
I give the chemo. I don't receive it!
I put the PICC lines in I don't consider getting one myself!
I comfort and support others. Not the other way round.
Nobody told me there'd be days like these.
Strange days indeed!
Thursday, 17 May 2012
Waiting. Again! sigh
2 days post op. Now I am waiting for final pathology.
Are the lymph nodes really clear? Do we have clear margins?
I imagine the pathologists doing their job. Looking at samples of flesh from faceless people.
I remember sitting in the lymphoma meetings looking at samples of lymph nodes on the big screen while the pathologist discussed the findings. Looking for cancer cells in a piece of flesh 5cm or so must be like looking for a needle in haystack!
My breast and underarm are sore and swollen. Thankfully panadol is holding it quite well at the moment. Im trying to stay off the Endone as I think I may be allergic after getting the itches with it yesterday.
Goddamn it! Endone rocks!
I woke up at 1:30 this morning a little anxious about my pathology.
Yesterday in the shower I noticed the mark that the radiologist put on my skin where one of my sentinel nodes was. The incision under my arm is about an inch away from this mark.
Questions flood my nervous brain.
Did he take the right one?
Is it negative because he took the wrong one?
Do I still have cancer cells inside me?
DID HE TAKE THE RIGHT ONE??????
The other thing that worries me is the blue stain on my breast. Its on top but the tumour was underneath. Why?
If the injection was not in the right spot could it have shown the wrong node?
Im sure there are very sensible answers for all of these questions, he is a very experienced breast surgeon. But I am such a nervous space cadet that I cant help but worry.
Maybe I should pop a lorazy.
I'm thinking I'm going to have myself a cracking prescription drug habit when this is all done! But thats all ok cos I am a rock star! all the best rock stars have habits!
Are the lymph nodes really clear? Do we have clear margins?
I imagine the pathologists doing their job. Looking at samples of flesh from faceless people.
I remember sitting in the lymphoma meetings looking at samples of lymph nodes on the big screen while the pathologist discussed the findings. Looking for cancer cells in a piece of flesh 5cm or so must be like looking for a needle in haystack!
My breast and underarm are sore and swollen. Thankfully panadol is holding it quite well at the moment. Im trying to stay off the Endone as I think I may be allergic after getting the itches with it yesterday.
Goddamn it! Endone rocks!
I woke up at 1:30 this morning a little anxious about my pathology.
Yesterday in the shower I noticed the mark that the radiologist put on my skin where one of my sentinel nodes was. The incision under my arm is about an inch away from this mark.
Questions flood my nervous brain.
Did he take the right one?
Is it negative because he took the wrong one?
Do I still have cancer cells inside me?
DID HE TAKE THE RIGHT ONE??????
The other thing that worries me is the blue stain on my breast. Its on top but the tumour was underneath. Why?
If the injection was not in the right spot could it have shown the wrong node?
Im sure there are very sensible answers for all of these questions, he is a very experienced breast surgeon. But I am such a nervous space cadet that I cant help but worry.
Maybe I should pop a lorazy.
I'm thinking I'm going to have myself a cracking prescription drug habit when this is all done! But thats all ok cos I am a rock star! all the best rock stars have habits!
Wednesday, 16 May 2012
The morning after
I waited until about 6pm for surgery. Long long day. But that's what I get for pushing for surgery this week!
They call for me and the give me my premed. IM injection in the leg! Bastards. It takes a while to work though, cos now the nerves really ramp up and my stomach is tied in knots. My family can't come with me now, we are really doing this, I have been on the verge of freaking out all day and now it exploded and I begin to cry. I kiss them goodbye.
The pre surgery area is bustling and busy. Filled with lots of machines that go bing.
There are pre op jitterers like me and post op moaners like the poor woman across from me. The premed starts to kick in and thankfully I close my eyes for a nap.
We move into theatre. It's freezing in here! I move onto the operating table.
The anesthetist comes and puts a cannula in. She can't cannulate for shit. I wonder if I should show her? Maybe not. The mofo hurts as it is!
They put the big black mask over my face and that's the last thing I remember.
I wake up in recovery and I remember the nurses telling me the lymph nodes were clear. The lymph nodes were clear! I believe I said something along the lines of FUCKING AWESOME!
I have a little pain so the give me a shot of fentanyl.
As I wake up more, I ask the nurse, "did you tell me my nodes were clear?" "yes" she says. "thank fuck I say" all potty mouthed this evening!
As I wake up further, they take me to my room for the night and I stop to see the surgeon. He tells me the same thing and I thank him profusely.
HOWEVER, we are not completely clear just yet, the pathologist may still find cancer cells in the nodes when they have a closer look. But for the moment I am stoked!
We go to my room and my beautiful family is waiting for me. The only thing that would complete this picture would be to have my younger 2 there as well. I wish they were, but I'll see them very soon.
Tuesday, 15 May 2012
Sweating bullets
Well were here in day surgery.
Waiting waiting.
I've seen the nurse, anesthetist and the breast care nurses (my lovely friends and ex colleagues)
This morning I had a lymphoscintogram where they inject a radioactive isotope into my breast around the cancer to map the lymph node(s) that drain that area.
The radiographer was a lovely very gentle young man, the radiologist appeared to be a bit of a prick! Couldn't even get a laugh out of him as he was injecting radioactive crap into my boob. Ass.
Clear nodes clear nodes clear nodes.
This is my mantra at the moment. I pray to god it works.
If I wake up with a drain under my arm I'm gonna smash someone!
Waiting waiting.
I've seen the nurse, anesthetist and the breast care nurses (my lovely friends and ex colleagues)
This morning I had a lymphoscintogram where they inject a radioactive isotope into my breast around the cancer to map the lymph node(s) that drain that area.
The radiographer was a lovely very gentle young man, the radiologist appeared to be a bit of a prick! Couldn't even get a laugh out of him as he was injecting radioactive crap into my boob. Ass.
Clear nodes clear nodes clear nodes.
This is my mantra at the moment. I pray to god it works.
If I wake up with a drain under my arm I'm gonna smash someone!
Wednesday
It's the morning of surgery and I'm awake at the crack of sparrow fart. Not even the lorazepam can keep me asleep this morning.
Oh well plenty of time for sleep later.
I'm nervous.
There's something about surgerynthat makes me nervous. I just can't fathom going instantly to sleep and waking up again in what seems like a nanosecond when you know that far more time has elapsed.
Please god let him get it all first go.
Please let my lymph nodes be clear.
Please let it be the best possible outcome under the circumstances.
I want to be home ASAP for my family.
I want to watch the kids play sport on Saturday and see them so proud because their grandma is watching for the first time.
I want to watch my baby umpire her first netball game.
I just want to be normal and do the things I would normally do.
I am absolutely humbled by the outpouring of love and support from all my friends and family.
I can't believe it. I am so lucky and blessed to have so many out there willing to pray, send thoughts, help me physically, practically I am amazed. I feel for those who don't havemthis support and can't imagine what it would be like to go through this on your own.
Isolated.
Doing it all yourself.
I want to help those in that situation and give some of the love and support that I have been so lucky to receive.
I hate waiting.
Patience is a virtue of which I have none!
Please god let him get it all first go.
Please let my lymph nodes be clear.
Please let it be the best possible outcome under the circumstances.
I want to be home ASAP for my family.
I want to watch the kids play sport on Saturday and see them so proud because their grandma is watching for the first time.
I want to watch my baby umpire her first netball game.
I just want to be normal and do the things I would normally do.
I am absolutely humbled by the outpouring of love and support from all my friends and family.
I can't believe it. I am so lucky and blessed to have so many out there willing to pray, send thoughts, help me physically, practically I am amazed. I feel for those who don't havemthis support and can't imagine what it would be like to go through this on your own.
Isolated.
Doing it all yourself.
I want to help those in that situation and give some of the love and support that I have been so lucky to receive.
I hate waiting.
Patience is a virtue of which I have none!
Friday
My breast care nurse has organized for me to see a medical oncologist and a breast surgeon.
I didn't want to go local for treatment, I don't know why, it just seemed too close to home and too weird to be treated by people I knew.
The surgeon I called who operated out of RPA never got back to me and I wanted action so the decision was made for me.
As for medical oncologist there was no one else I really wanted to go to other than Dr Boobs so we decided to go for treatment at the local satellite clinic rather than the crazy town of the place I used to work.
I will have to go to crazy town for radiotherapy if I need it but that is more palatable to me.
So we go to our little clinic to see the oncologist whom I have known for a while and who I used to work with. I have the utmost respect for this woman both as a clinician and a person.
A million years ago in another world we used to shoot the breeze about life and living with teenage girls, working in the boys club and just stuff in general. She gave my daughter a job at her private rooms and I made her daughter a hello kitty cake.
I go to the GP before hand to get some referrals and I am all business and matter of fact. In nurse mode.
Organizing.
My GP isn't there so I see one of the others who gives me my referrals and he is very sympathetic and lovely which is sweet.
On the way to the clinic, my efficient veneer starts to crack and the nervousness sets in.
It gets worse as we get closer and as I walk in I feel ill.
I have worked here before a long time ago as a nurse on the floor and more recently as a senior nurse popping in once or twice a fortnight.
The receptionist recognizes me and then the manager comes out to say hello and I break down into a big blubbery mess.
This is so wrong!
This isnt how it's supposed to be, I'm the nurse! Not the patient for fucks sake!
We have a chat and a hug and I see a couple of others that I used to work with.
It's so surreal it's bizarre.
One of the other medical oncologists who I have known for a while pops his head in to get a patient and sees me.
He gives me a smile and a wave.
Word has obviously gotten around.
My doctor comes in.
My doctor.
My oncologist.
My medical oncologist.
It still doesn't feel right! I keep thinking what the fuck?
She calls me in and gives me a hug. Immediately I feel at ease I know I have made the right decision. We do the usual.
History, medications, blah blah blah. She looks at my histopathology and does a physical exam.
She outlines chemotherapy. Phew! Gonna hit it and hit hard!
She wants to start as soon as possible after surgery and smash it.
It's gonna be tough, but I am determined to get through it.
The girls in the clinic do an assessment of my veins. They are a bit shit today thanks to nerves and lack of water. I may need a central line to get through this.
Meh no dramas.
Bring it.
I am willing to do whatever I have to to cure this shit.
Anything.
Chemo
Radiotherapy
Surgery
Starvation
Forgo shoes
No more chocolate
I will hang with Bear Gryls and eat frogs and drink snail pee.
Whatever it takes I don't care.
We go straight to the surgeon. He is very matter of fact. I don't know this man. Thats actually kind of nice. He doesn't mention my profession, does he know? He proposes to do a lumpectomy and sentinel node biopsy. I tell him to feel free to take the whole breast, I'm not fussed. He won't though. He asks how Wednesday week is for me, I tell him I was kind of hoping for next week. He sighs and looks at his schedule. It'll be late he says, do I mind a late night? I'll be asleep! Haha I don't care!!! Just get the fucker out!
So we are booked.
Next Wednesday. Let's do it.
Next step is a chest xray, abdominal ultrasound and heart scan. Let's go!
I didn't want to go local for treatment, I don't know why, it just seemed too close to home and too weird to be treated by people I knew.
The surgeon I called who operated out of RPA never got back to me and I wanted action so the decision was made for me.
As for medical oncologist there was no one else I really wanted to go to other than Dr Boobs so we decided to go for treatment at the local satellite clinic rather than the crazy town of the place I used to work.
I will have to go to crazy town for radiotherapy if I need it but that is more palatable to me.
So we go to our little clinic to see the oncologist whom I have known for a while and who I used to work with. I have the utmost respect for this woman both as a clinician and a person.
A million years ago in another world we used to shoot the breeze about life and living with teenage girls, working in the boys club and just stuff in general. She gave my daughter a job at her private rooms and I made her daughter a hello kitty cake.
I go to the GP before hand to get some referrals and I am all business and matter of fact. In nurse mode.
Organizing.
My GP isn't there so I see one of the others who gives me my referrals and he is very sympathetic and lovely which is sweet.
On the way to the clinic, my efficient veneer starts to crack and the nervousness sets in.
It gets worse as we get closer and as I walk in I feel ill.
I have worked here before a long time ago as a nurse on the floor and more recently as a senior nurse popping in once or twice a fortnight.
The receptionist recognizes me and then the manager comes out to say hello and I break down into a big blubbery mess.
This is so wrong!
This isnt how it's supposed to be, I'm the nurse! Not the patient for fucks sake!
We have a chat and a hug and I see a couple of others that I used to work with.
It's so surreal it's bizarre.
One of the other medical oncologists who I have known for a while pops his head in to get a patient and sees me.
He gives me a smile and a wave.
Word has obviously gotten around.
My doctor comes in.
My doctor.
My oncologist.
My medical oncologist.
It still doesn't feel right! I keep thinking what the fuck?
She calls me in and gives me a hug. Immediately I feel at ease I know I have made the right decision. We do the usual.
History, medications, blah blah blah. She looks at my histopathology and does a physical exam.
She outlines chemotherapy. Phew! Gonna hit it and hit hard!
She wants to start as soon as possible after surgery and smash it.
It's gonna be tough, but I am determined to get through it.
The girls in the clinic do an assessment of my veins. They are a bit shit today thanks to nerves and lack of water. I may need a central line to get through this.
Meh no dramas.
Bring it.
I am willing to do whatever I have to to cure this shit.
Anything.
Chemo
Radiotherapy
Surgery
Starvation
Forgo shoes
No more chocolate
I will hang with Bear Gryls and eat frogs and drink snail pee.
Whatever it takes I don't care.
We go straight to the surgeon. He is very matter of fact. I don't know this man. Thats actually kind of nice. He doesn't mention my profession, does he know? He proposes to do a lumpectomy and sentinel node biopsy. I tell him to feel free to take the whole breast, I'm not fussed. He won't though. He asks how Wednesday week is for me, I tell him I was kind of hoping for next week. He sighs and looks at his schedule. It'll be late he says, do I mind a late night? I'll be asleep! Haha I don't care!!! Just get the fucker out!
So we are booked.
Next Wednesday. Let's do it.
Next step is a chest xray, abdominal ultrasound and heart scan. Let's go!
Saturday, 12 May 2012
Thursday morning I wake up early. Mega early in fact its around 4:30 am.
I feel sick.
I feel like I want to vomit.
I am scared.
Shitless.
Where has my zen gone? I am no longer buddhist monk. I am frightened child.
The room is dark and the cupboard is open a crack.
The monster is looking at me.
waiting for me in darkshadows.
under the bed, in my thoughts, in my body.
my body has betrayed me.
How the fuck did this happen to me!
Me who is so paranoid and breast aware?
why did I not keep a closer eye on things?
How the fuck did I become so complacent?
Stupid stupid person.
I want to shout to the world
my risk is low
CHECK YOUR BREASTS!
check check check.
every month dont forget!
I want to go on TV, on posters, on billboards, on the radio. I want to speak at functions. I want to tell the world to be breast aware.
This happened to me one of the most paranoid people in the known universe.
and I missed it.
I feel sick.
I feel like I want to vomit.
I am scared.
Shitless.
Where has my zen gone? I am no longer buddhist monk. I am frightened child.
The room is dark and the cupboard is open a crack.
The monster is looking at me.
waiting for me in darkshadows.
under the bed, in my thoughts, in my body.
my body has betrayed me.
How the fuck did this happen to me!
Me who is so paranoid and breast aware?
why did I not keep a closer eye on things?
How the fuck did I become so complacent?
Stupid stupid person.
I want to shout to the world
my risk is low
CHECK YOUR BREASTS!
check check check.
every month dont forget!
I want to go on TV, on posters, on billboards, on the radio. I want to speak at functions. I want to tell the world to be breast aware.
This happened to me one of the most paranoid people in the known universe.
and I missed it.
I had all the protective factors: pre menopausal, young, commenced menstruation at 13, first child at 20, 3 pregnancies, breast fed 3 children. Not on the pill for very long. Good diet, lots of vegies, green tea blah blah blah blah.
In the end it didn't make a lick of difference.
no one is immune.
no one is more unlikely to get it than anyone else
Check your breasts
every month by yourself and annually by your GP.
I wish I had.
The girls stay home from school thursday and the man stays home from work.
I still cant eat so I go to the organic shop and grab myself a juice with a bit of ginger in it and some organic fruit and veg. Need to maximise the goodness atm. Screw this woollies shit thats probably been sitting in a freezer for 20 months, we want fresh, no chemicals, mega super crazy natural fruit and veg.
Time to fuel the bod with the good stuff.
Time to fight this mofo.
The man throws himself into the only thing he thinks he can do to help. His cars. His cars are his joy, his passion, his time out from the world. They are his stress relief. His other women. (bitches) The green one I dont mind, the black one I call the black bitch cos its like his mistress.
He decides he's going to sell them so we've got a bit of money in the bank in case we need it. My darling love is going to sell his pride and joys that he's rebuilt and worked on because I have cancer. I love him.
I want to go to the beach. My favourite place in the whole wide world. The sand, salty air, sound of the waves, sun on my skin makes me feel alive. I always feel like my soul has been cleansed after I immerse myself in the beach.
I want us to go as a family but the man wants to keep working on his car. I am disappointed but I understand that this is his way of coping. Of taking control of a situation that he has no control over. He is a man, this is what men do. They try and fix things, and this is the only thing he can fix.
He cant fix me.
I dont push it.
The girls and I have a beautiful afternoon walking barefoot on the sand. Dipping our toes in the chilly water. We wander through the mall and have lunch, looking in all the shops. I buy a book on breast cancer by Prof John Boyages called "taking control" a book recommended to me by the girls at the clinic.
I feel better as the day wears on.
Our beautiful friends our sydney family pop in with pizza for dinner (so much for my clean diet!) and give us lots of love. I love these guys, they are crazy just like us and we spend the evening in love and laughter.
Wednesday
I wake up Wednesday morning the day of the clinic appointment feeling sick to my stomach. I feel like I want to vomit. Can't eat, can't drink, cant even stomach a coffee. Now that is big for me, I am queen of coffee! and so off we go.
We are at a private breast clinic which has all the facilities on site. These guys are Boobs Incorporated. I see the nurse (have a little tear) then the doctor. The doctor is fairly unimpressed by both the lump and the dimpling, she can feel and see it but says it could be a number of things, the smallest percentage being cancer. I am mildly reassured by this. Mildly.
Mammogram time. Im sure a man invented this. I honestly wonder if they would do the same thing to their balls on an annual basis if they had to be screened for testicular cancer. I believe if that were the case, the male population may be a lot lower!
So my poor boobies have the life squeezed out of them by two perspex plates and xrays are taken. The doc says they are inconclusive. There is something there but they cant quite figure out what it is. So off to ultrasound. But regardless of the US findings, I will be having a biopsy today. Yay me.
The ulstrasound is the teller. The doc looks at the films of the US and sees something nasty, which she is pretty sure is cancer.
Strangely enough I am as zen as a Buddhist monk. I was kind of expecting it. I knew it deep down somewhere. My husband is all practical. "wait for the biopsy, nothing is certain until the biopsy" yeah yeah I tell him knowing the biospy is just a formalisation. Whatever is in there aint good.
So we have 2 fine needle aspirations as there are 2 areas (awesome) and 2 core biopsies.
The FNA is put on slides straight away and looked at by the doctor and the pathologist and cancer is confirmed. The core is sent for further testing.
I call my friend where I used to work who is a breast care nurse and give her the lowdown. She is absolutely amazing. The machine goes into overdrive.
I am in lala land!
Numb.
Head is spinning.
All I want to do is hold my girls. I call my ex (their father) as they are with him this week. I ask if I can pick them up. He asks why and I say "because Ive just been diagnosed with breast cancer and I need my babies" and then I lose it.
He is going to drop them off, my eldest is still at home, she has been informed of everything throughout the day, we go home and wait for the girls.
They come home all sprightly and happy. "how come we came home early mum?" I try and think of the best way to do this. Shit. How do I do this?
I get them to sit with me and I just say it.
"I went to the doctors today and had a few tests and I have breast cancer"
They lose it. My youngest cries but my 13 year old wails. She wails like I have never heard her wail. It smashes my heart into a gazillion pieces. I am crying, the girls are crying even my husband is crying although he hid behind the dog! ha! man.
I explain to them that I'm not dying, I have cancer and I have to have surgery and chemotherapy but I have no intention of dying just yet.
I try and pick my words carefully. I dont want to say I'm not going to die because I'm not a fan of tempting fate. I have a ridiculously large superstitious streak and I don't dare attempt to cause karma to bite my ass at this point!
I tell them matter of fact and to the point.
"Yes people die of breast cancer but the treatments are very good nowadays and lots of people dont die. I don't know if I will die but I am certainly going to give it my best shot not to!"
I tell them about our good friend who is the mother of their friends who had breast cancer 10 years ago and is still going strong (touch wood, spit on the evil eye etc etc) Ha! you thought I was kidding!
I am so tired after this long and exhausting day but again I am scared to go to sleep. So I stay with the girls for a bit while my husband goes to bed early. He needs some private gentleman time, not in that way! But in the way men need to withdraw to deal with their pain. I go to bed with him to try and comfort him and let him know its ok to show his feelings to us, but at the end of the day, he is but a man!
My girls have a slumber party together in the lounge on couches and mattresses and stay up late watching movies together. Sibling togetherness, it warms my heart.
If I'm not around, they will have each other. Not that I have any intention of going anywhere soon! (wood, eye)
They come home all sprightly and happy. "how come we came home early mum?" I try and think of the best way to do this. Shit. How do I do this?
I get them to sit with me and I just say it.
"I went to the doctors today and had a few tests and I have breast cancer"
They lose it. My youngest cries but my 13 year old wails. She wails like I have never heard her wail. It smashes my heart into a gazillion pieces. I am crying, the girls are crying even my husband is crying although he hid behind the dog! ha! man.
I explain to them that I'm not dying, I have cancer and I have to have surgery and chemotherapy but I have no intention of dying just yet.
I try and pick my words carefully. I dont want to say I'm not going to die because I'm not a fan of tempting fate. I have a ridiculously large superstitious streak and I don't dare attempt to cause karma to bite my ass at this point!
I tell them matter of fact and to the point.
"Yes people die of breast cancer but the treatments are very good nowadays and lots of people dont die. I don't know if I will die but I am certainly going to give it my best shot not to!"
I tell them about our good friend who is the mother of their friends who had breast cancer 10 years ago and is still going strong (touch wood, spit on the evil eye etc etc) Ha! you thought I was kidding!
I am so tired after this long and exhausting day but again I am scared to go to sleep. So I stay with the girls for a bit while my husband goes to bed early. He needs some private gentleman time, not in that way! But in the way men need to withdraw to deal with their pain. I go to bed with him to try and comfort him and let him know its ok to show his feelings to us, but at the end of the day, he is but a man!
My girls have a slumber party together in the lounge on couches and mattresses and stay up late watching movies together. Sibling togetherness, it warms my heart.
If I'm not around, they will have each other. Not that I have any intention of going anywhere soon! (wood, eye)
Friday, 11 May 2012
Its Saturday the 12th May and Im sitting here pondering over the last week of my life.
Monday: GP found a breast lump
Wednesday: Ultrasound shows something nasty, Biopsy confirms said nastiness.
HOUSTON! We have a breast cancer!
Friday: Medical Oncologist to discuss chemo and surgeon to discuss getting this little bastard out!
A little about me.
I am 39 years old, have 3 beautiful children (all girls) and a gorgeous husband. I am a cancer nurse and have worked in cancer care for the past 12 years. I have done all aspects of cancer care including palliative care, day chemotherapy and bone marrow transplant. My passion is haematology (leukaemia, lymphoma and the like). Recently I left the clinical setting to work for a department who provides online resources for clinicians dealing with cancer including treatment protocols, best practise for oncological emergencies and clinical procedures for common practises in cancer care.
I love animals and would quite happily live in a zoo, in our own mini zoo we have 2 hairy behemoths: a malamute and a husky cross, a wee birdie and an assortment of fish. We did have some hermit crabs but just recently said the last rites to the last one. RIP Starburst.
Monday
I had a chesty cough and felt a little crap and so took a sick day from work. Now I would normally go and nip down to the medical centre for something as simple as a prescription or a medical certificate, I only go to my GP when I need advice or a proper medical assessment. Thankfully I needed a few other things sorted so I thought I'd try and get in to see her (without actually holding out much hope as she is notoriously hard to get into)
Lo and Behold! hip hip hooray, we have an appointment. So off I go and get all the business sorted and being that time do all the mandatory lady checks. During my routine breast exam, she feels a lump in my Left breast. She asks me to feel it to see what I think and to be honest I think its the same as every other lump I have ever felt in my breast.
My breasts are quite large (E cup thankyouverymuch!) and are very lumpy and bumpy. Strangely enough I am quite paranoid about breast cancer as my 1st cousin on my mothers side died of a nasty nasty breast tumour quite quickly 20 years ago, and then recently her mother, my maternal aunt was diagnosed with a small tumour on a routine mammogram.
So I have had many ultra sounds over the years checking out weird lumps and bumps that have popped up and freaked me out. But to be honest I wasnt actually concerned about this one because it really seemed like the same old same old. Boy was I wrong!
My GP doesnt think its anything sinister but sends me off for a scan anyway. I am quite complacent. Until. The next day as I am about to hop in the shower, Im looking at my breasts in the mirror and I raise my arms above my head. As I do this I just happen to turn slightly and I see a flat spot on my breast where the lump is.
This is the point where the universe explodes. I know that this is not good. This is a warning sign. A beacon. A klaxon. Warning Warning Will Robinson!
I feel sick. I dont go to work that day. I am still chesty and fluey but was planning on going. Not any more, I cant sit there and write about cancer. Talk about cancer. Be surrounded by cancer. Not with this potential ticking time bomb in my breast.
So I retreat into my little couch world and ponder the worst. I google breast dimpling. There are some other causes including fat necrosis, benign cysts and the like, but the most common one that comes up is breast cancer.
I book my scan. Thankfully they can get me in the next day. So I am slightly comforted by that. Slightly.
I text my husband telling him what I found. Ever practical and calming he tells me not to fret its probably nothing. I text my friend who is 10 years cancer free. She out of everyone is the only one who knows what I am going through, but even then she is a non medical person. I am a cancer nurse. I have seen all the worst case scenarios and they aint nice! She also tries to reassure me that it may be nothing but also says she is here for me no matter what. I text my friend who is a trainee oncologist who wants to specialise in breast and gynae. She calls me and is more practical, more medical, asking me symptoms, last scans etc. I break down and lose it I dont want to die! I dont want to leave my children, they need me! What if all this back pain is bone mets! What if these lung issues are lung mets! What if my headaches are brain mets! Im freaking out now.
She reassures me that no matter what I have an army of clinicians at my disposal and that regardless of the outcome I will have the best treatment ever. And anyway. Its probably nothing.
I text my mum. I had been reluctant to do this as she has been going through a lot of stress and I didnt want to stress her further. But then on the other hand, if it turned out to be the worst scenario, I didnt want to drop a nuclear bomb in her lao either. At least this way, she would be slightly prepared.
Got the same spiel, its all good, its probably nothing. Let me know immediately what the test say. She tells me she knows its going to be ok, I feel it in my bones. I feel a dark cloud when she says that like karma is listening and has decided to prove her wrong.
My eldest daughter hears all of this and tries to comfort me. She offers to come to the scan with me, I am a little hesitant, she is my child, I accompany and comfort you! Not the other way around!
I have the most awful feeling in the pit of my stomach. This will not bode well. I feel it.
Monday: GP found a breast lump
Wednesday: Ultrasound shows something nasty, Biopsy confirms said nastiness.
HOUSTON! We have a breast cancer!
Friday: Medical Oncologist to discuss chemo and surgeon to discuss getting this little bastard out!
A little about me.
I am 39 years old, have 3 beautiful children (all girls) and a gorgeous husband. I am a cancer nurse and have worked in cancer care for the past 12 years. I have done all aspects of cancer care including palliative care, day chemotherapy and bone marrow transplant. My passion is haematology (leukaemia, lymphoma and the like). Recently I left the clinical setting to work for a department who provides online resources for clinicians dealing with cancer including treatment protocols, best practise for oncological emergencies and clinical procedures for common practises in cancer care.
I love animals and would quite happily live in a zoo, in our own mini zoo we have 2 hairy behemoths: a malamute and a husky cross, a wee birdie and an assortment of fish. We did have some hermit crabs but just recently said the last rites to the last one. RIP Starburst.
Monday
I had a chesty cough and felt a little crap and so took a sick day from work. Now I would normally go and nip down to the medical centre for something as simple as a prescription or a medical certificate, I only go to my GP when I need advice or a proper medical assessment. Thankfully I needed a few other things sorted so I thought I'd try and get in to see her (without actually holding out much hope as she is notoriously hard to get into)
Lo and Behold! hip hip hooray, we have an appointment. So off I go and get all the business sorted and being that time do all the mandatory lady checks. During my routine breast exam, she feels a lump in my Left breast. She asks me to feel it to see what I think and to be honest I think its the same as every other lump I have ever felt in my breast.
My breasts are quite large (E cup thankyouverymuch!) and are very lumpy and bumpy. Strangely enough I am quite paranoid about breast cancer as my 1st cousin on my mothers side died of a nasty nasty breast tumour quite quickly 20 years ago, and then recently her mother, my maternal aunt was diagnosed with a small tumour on a routine mammogram.
So I have had many ultra sounds over the years checking out weird lumps and bumps that have popped up and freaked me out. But to be honest I wasnt actually concerned about this one because it really seemed like the same old same old. Boy was I wrong!
My GP doesnt think its anything sinister but sends me off for a scan anyway. I am quite complacent. Until. The next day as I am about to hop in the shower, Im looking at my breasts in the mirror and I raise my arms above my head. As I do this I just happen to turn slightly and I see a flat spot on my breast where the lump is.
This is the point where the universe explodes. I know that this is not good. This is a warning sign. A beacon. A klaxon. Warning Warning Will Robinson!
I feel sick. I dont go to work that day. I am still chesty and fluey but was planning on going. Not any more, I cant sit there and write about cancer. Talk about cancer. Be surrounded by cancer. Not with this potential ticking time bomb in my breast.
So I retreat into my little couch world and ponder the worst. I google breast dimpling. There are some other causes including fat necrosis, benign cysts and the like, but the most common one that comes up is breast cancer.
I book my scan. Thankfully they can get me in the next day. So I am slightly comforted by that. Slightly.
I text my husband telling him what I found. Ever practical and calming he tells me not to fret its probably nothing. I text my friend who is 10 years cancer free. She out of everyone is the only one who knows what I am going through, but even then she is a non medical person. I am a cancer nurse. I have seen all the worst case scenarios and they aint nice! She also tries to reassure me that it may be nothing but also says she is here for me no matter what. I text my friend who is a trainee oncologist who wants to specialise in breast and gynae. She calls me and is more practical, more medical, asking me symptoms, last scans etc. I break down and lose it I dont want to die! I dont want to leave my children, they need me! What if all this back pain is bone mets! What if these lung issues are lung mets! What if my headaches are brain mets! Im freaking out now.
She reassures me that no matter what I have an army of clinicians at my disposal and that regardless of the outcome I will have the best treatment ever. And anyway. Its probably nothing.
I text my mum. I had been reluctant to do this as she has been going through a lot of stress and I didnt want to stress her further. But then on the other hand, if it turned out to be the worst scenario, I didnt want to drop a nuclear bomb in her lao either. At least this way, she would be slightly prepared.
Got the same spiel, its all good, its probably nothing. Let me know immediately what the test say. She tells me she knows its going to be ok, I feel it in my bones. I feel a dark cloud when she says that like karma is listening and has decided to prove her wrong.
My eldest daughter hears all of this and tries to comfort me. She offers to come to the scan with me, I am a little hesitant, she is my child, I accompany and comfort you! Not the other way around!
I have the most awful feeling in the pit of my stomach. This will not bode well. I feel it.
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