Night 6 since this fiasco of a bug began. While the razorblades and pounding headaches have ceased, the scratchy throat has taken over, with damn awful hacking and coughing occurring all night almost to the point of vomiting. This god awful gel shit the doctor ordered to numb my throat is a joke. Its a thick gellified goo which ‘plops’ into a glass and the same thing happens when you try to use it for your throat. Its a mission even getting it anywhere near the base of your throat which is where the scratchiness eminates from. Given up on it (gel I mean).
Its been six nights of pure frustration and bugger all sleep. I had really been hoping once the razorblades and headaches left, I would be able to finally get some sleep, but no...last night I was up and down from the lounge to the bedroom, trying to decide where to sleep, worrying I would wake hubby up with my endless hacking. But was so uncomfortable in the lounge, trying to sleep sitting partly upright and the comfort of my bed was calling. So gutted...was so ready for a decent nights sleep finally, but no, it isn’t meant to be. Not yet...
Its a little before 4.00am Sunday morning. I’ve been awake since about 3.00 hoping I’ll quickly nod off again. Tonight has been the best sleep by far. My older daughter and I were watching a netflix series and partly into the third one, I nodded off and got a hell of a shock when she woke me up at the end of it and told me I had slept through most of it. Awesome! Never been so happy to miss a programme in all my life. Waddled off to bed with a lozenge to help ease the not too bad scratchiness and happy to report I was able to go back off the sleep - that was about 11pm. Scratchiness has well and truly settled back in now, so propped upright, had a lozenge, some ibuprofen and paracetamol, a cup of warm water beside me to sip away on - hoping this combination will ease it.
Sleep...somehing we can take for granted. I worry a bit when I don’t get a decent amount of sleep (which is too often) when I have work the next day, but am able to wing it by having a nap when I get home after work. Its not ideal but I can make it through a week of work, wishing everyday was Friday and finally by that lovely blessed day, I can hardly wait for 4.30pm to come when I can jump in my car and go home for two whole days. But THIS! This has been something completely different. Hardly any sleep each night and knowing everyone else in your household is fast asleep and your worried you might wake them with your wanderings around. Thursday night, Friday morning I was so distressed, I ended up ringing the emergemcy number. I was absolutely beside myself. My head felt like it was going to explode, my ears were blocked and sore, made worse by using the waxsol the doctor had prescribed, not so much the razors although still there. But I just didn’t know what to do, and I knew I didn’t have anything in me to go up to A&E so I rang emergency. The dispatcher got someone to ring me and although after asking lots of questions, were able to give me some advice which I followed. Instead of taking the painkillers I use for my cancer aches and pains, I should have been taking ibuprofen. Within half an hour, I could feel the relief kicking in. I felt a bit stupid to be honest, but these days I am so forgetful and it never occurred to me to take those. Funnily enough they’re keeping my aches and pains at bay as well. I womder if I should continue taking them instead of the other stuff...
Today I have felt like a wrung out dishcloth, or how I would imagine one feeling if it could feel. Eyeballs hanging out but just haven’t been able to nod off. Finally crashed out on the couch late afternoon for a little while, but really need to try and catch up on some sleep later today. I am aiming to go back to work tomorrow, but in all honesty, I don’t feel I can or should. I don’t know that my body is ready to go back into that mode of waking up early (if I’ve even been asleep) and having to sit up for eight hours in an office chair. I don’t know, lets see what the rest of today brings. Even the doctor said to me that rest and fluids are the main things required to get better.
So on that note, lets hope that this is the last post about this damn virus, givng you every single account of what is going on. But in all honesty, it gives me something to do during these dark, quiet hours and it brings a sense of relief being able to get it off my chest. Cancer has definitely taken a back seat this last week and I have to admit I really like that! So many people have made contact and said they are always there is I need to be taken anywhere, no matter what time of the day or night. Their offers are so appreciatd but I am not the sort of person who does something like that easily. I have never found it easy asking for help and that continues now. I would imagine, depending on how urgent it is, would absolutely depend on whether I call someone for help. I had to do it in the early days of my diagnosis, especially all those horrendous trips to the A&E when I was having problems with my wound infections.
The scratchiness seems to have eased now and I am slipping down my propped up pillows, feeling quite uncomfortable. Hopefully I can nod back off to sleep again...think I’ll give it a try.
Sunday 29th October 2017 - 4.40am
Sunday, 29 October 2017
Friday, 27 October 2017
I am a terrible patient
I am going to drive you crazy...I am going to drive myself crazy...
I hate feeling like this! I feel almost ridiculous even saying this, but honestly right about now, I feel being struck down by this stupid whatever it is, headcold, virus - whatever, is worse than having bloody cancer. I don’t mean to be flippant, or maybe I do. But since having cancer, I have not exhibited any kinds of symptoms that feature so prominently and in your face. Not even when I had my boobs cut off...I don’t remember feeling this bloody miserable. Maybe I was and I’ve simply forgotten.
I get a bit of a reprieve from mainly the pain in my throat but the headaches have been fairly constant. They lessen for a while but don’t allow me the luxury of completing disappearing even for a short while. My head is starting to pound at full volume and the sore throat is coming back. I have filled both ears with waxsol ear drops and shoved bits of cotton balls in to block the stuff in. I have given up on the paracodeine and gone straight for the big stuff. 2 x 30mg codeine tablets. I hope they kick in soon. I am almost beside myself, I just don’t know what to do.
Drink lots of water the doctor said, the headaches are from your high temperature. I feel like I have drunk enough water to sink a battleship and my wee’s are almost clear! How much more do I need to drink and why won’t this stupid headache go away????
When hubby went down the road to pick up my script, he was given everything but the shit to gargle and numb my throat! The stuff I needed the most...I am terrified at the thought of having another night like last night hence taking the stronger painkillers. The chemist people were going to order the stuff in and it will arrive tomorrow morning. The doctor said to me if I feel like I am getting worse to start taking the antibiotics she prescribed just in case it is bacterial and not viral. Does this constitute as getting worse because its not getting any better? Or am I just being a terrible patient and being irrational and impatient?
Funny eh, that something as simple as a sore throat and a few headaches can cause me so much distress. When I stop and remind myself I have cancer in my body...cancer that has escaped through my lymph node system and buried itself into some of my bones. This is probably one of the very few times where the cancer has taken a back seat, almost completely forgotten about, and it feels great! I feel like a normal functioning person, like I used to be almost two years ago.
Two years...shit I’ve just realised it is exactly two years since I was diagnosed with breast cancer. It seems such a long time ago and so much has gone on during that period of time. The shock of being diagnosed, not just in one breast but in both. The reality of waking up after my five or six hour surgery realising my breasts which nourishd my babies have gone and implants have taken their place, and not just that, they are also smaller - at my request! Come January, it will be two years since I was told I am metastatic. Two years of my advanced breast cancer years gone...leaving me with how many more? I want time to slow down...its going too fast. It doesn’t help when I am constantly wishing it was Friday so I can have the weekend to sit and do nothing if I so wish. I remember one of the ladies at work many years ago saying to me ‘stop wishing your life away Tania’. I always used to laugh at her but also realising the truth in what she had said. But now of course, it has an even truer ring to it. My life...my shortened life because of this stupid disease.
Even if I was to survive ten years, I have had almost two of those years, leaving me with another 8. While thats quite a reasonable amount of time to live with advanced cancer, it still isn’t very long. When you don’t have this diagnosis, you still don’t know how long you will live but you have the luxury of being able to dream you will live until you are in your 80’s and to see geandchildren and possibly great grandchildren. I don’t have that luxury, not if I am being realistic. Thats not to say it won’t happen. I would love to surprise myself but I really dislike it when people say to me ‘of course your going to live for years and years’. How do they know that? Are they privvy to information that I’m not? I need to be present in the real world with no false ideals. This is my way of coping with it. And if its too hard for someone to hear it, well too bad. This is my story, my journey - I am the one who has to deal with the facts and I don’t appreciate it when what I am saying or that my feelings are being dismissed. You think you find it hard dealing with the reality of my diagnosis? Take a moment and imagine what it is like for me. Knowing I will leave my husband, my beautiful babies. God, that is what tears me up inside - rips my heart into shreds. Knowing from the day I leave this world, I will never see my beautiful daughters again and knowing they will be shrouded with grief and I won’t be here to help them. These girls whom I gave life to, these girls who already lost their father at such a young age...these girls whom I love and adore more than anyone else in the world, the reason I was put on this earth...one thing is for sure, we will all die one day, but a diagnosis of a terminal disease regardless of what it is, hangs over you from the day you are diagnosed to the day you die. What a waste of energy.
Well that put a spanner in the works didn’t it. I was going on about how my throat and head had made me completely forget about the cancer and it comes back with a bang! Neither of those things have settled down either. Still got the blasted headache and my throat is getting a little more sore. What time did I take those bloody tablets? I know they take quite a while to kick in and you are only supposed to take them every 6 hours. By the time the damn things kick in, you really only get a short reprieve.
I hope this virus or whatever it is, gets on its bike very soon. I am hating feeling like this...
It is supposed to be pink Friday at work tomorrow and I was going to go dressed up in my pink breast cancer tee-shirt, fairy wings and tiara which I wore when I did the Pink Ribbon Street Appeal. I am disappointed I won’t be able to participate but guess getting some rest and recuperation time is more important.
Friday 27th October 2017 - 12.06am
I hate feeling like this! I feel almost ridiculous even saying this, but honestly right about now, I feel being struck down by this stupid whatever it is, headcold, virus - whatever, is worse than having bloody cancer. I don’t mean to be flippant, or maybe I do. But since having cancer, I have not exhibited any kinds of symptoms that feature so prominently and in your face. Not even when I had my boobs cut off...I don’t remember feeling this bloody miserable. Maybe I was and I’ve simply forgotten.
I get a bit of a reprieve from mainly the pain in my throat but the headaches have been fairly constant. They lessen for a while but don’t allow me the luxury of completing disappearing even for a short while. My head is starting to pound at full volume and the sore throat is coming back. I have filled both ears with waxsol ear drops and shoved bits of cotton balls in to block the stuff in. I have given up on the paracodeine and gone straight for the big stuff. 2 x 30mg codeine tablets. I hope they kick in soon. I am almost beside myself, I just don’t know what to do.
Drink lots of water the doctor said, the headaches are from your high temperature. I feel like I have drunk enough water to sink a battleship and my wee’s are almost clear! How much more do I need to drink and why won’t this stupid headache go away????
When hubby went down the road to pick up my script, he was given everything but the shit to gargle and numb my throat! The stuff I needed the most...I am terrified at the thought of having another night like last night hence taking the stronger painkillers. The chemist people were going to order the stuff in and it will arrive tomorrow morning. The doctor said to me if I feel like I am getting worse to start taking the antibiotics she prescribed just in case it is bacterial and not viral. Does this constitute as getting worse because its not getting any better? Or am I just being a terrible patient and being irrational and impatient?
Funny eh, that something as simple as a sore throat and a few headaches can cause me so much distress. When I stop and remind myself I have cancer in my body...cancer that has escaped through my lymph node system and buried itself into some of my bones. This is probably one of the very few times where the cancer has taken a back seat, almost completely forgotten about, and it feels great! I feel like a normal functioning person, like I used to be almost two years ago.
Two years...shit I’ve just realised it is exactly two years since I was diagnosed with breast cancer. It seems such a long time ago and so much has gone on during that period of time. The shock of being diagnosed, not just in one breast but in both. The reality of waking up after my five or six hour surgery realising my breasts which nourishd my babies have gone and implants have taken their place, and not just that, they are also smaller - at my request! Come January, it will be two years since I was told I am metastatic. Two years of my advanced breast cancer years gone...leaving me with how many more? I want time to slow down...its going too fast. It doesn’t help when I am constantly wishing it was Friday so I can have the weekend to sit and do nothing if I so wish. I remember one of the ladies at work many years ago saying to me ‘stop wishing your life away Tania’. I always used to laugh at her but also realising the truth in what she had said. But now of course, it has an even truer ring to it. My life...my shortened life because of this stupid disease.
Even if I was to survive ten years, I have had almost two of those years, leaving me with another 8. While thats quite a reasonable amount of time to live with advanced cancer, it still isn’t very long. When you don’t have this diagnosis, you still don’t know how long you will live but you have the luxury of being able to dream you will live until you are in your 80’s and to see geandchildren and possibly great grandchildren. I don’t have that luxury, not if I am being realistic. Thats not to say it won’t happen. I would love to surprise myself but I really dislike it when people say to me ‘of course your going to live for years and years’. How do they know that? Are they privvy to information that I’m not? I need to be present in the real world with no false ideals. This is my way of coping with it. And if its too hard for someone to hear it, well too bad. This is my story, my journey - I am the one who has to deal with the facts and I don’t appreciate it when what I am saying or that my feelings are being dismissed. You think you find it hard dealing with the reality of my diagnosis? Take a moment and imagine what it is like for me. Knowing I will leave my husband, my beautiful babies. God, that is what tears me up inside - rips my heart into shreds. Knowing from the day I leave this world, I will never see my beautiful daughters again and knowing they will be shrouded with grief and I won’t be here to help them. These girls whom I gave life to, these girls who already lost their father at such a young age...these girls whom I love and adore more than anyone else in the world, the reason I was put on this earth...one thing is for sure, we will all die one day, but a diagnosis of a terminal disease regardless of what it is, hangs over you from the day you are diagnosed to the day you die. What a waste of energy.
Well that put a spanner in the works didn’t it. I was going on about how my throat and head had made me completely forget about the cancer and it comes back with a bang! Neither of those things have settled down either. Still got the blasted headache and my throat is getting a little more sore. What time did I take those bloody tablets? I know they take quite a while to kick in and you are only supposed to take them every 6 hours. By the time the damn things kick in, you really only get a short reprieve.
I hope this virus or whatever it is, gets on its bike very soon. I am hating feeling like this...
It is supposed to be pink Friday at work tomorrow and I was going to go dressed up in my pink breast cancer tee-shirt, fairy wings and tiara which I wore when I did the Pink Ribbon Street Appeal. I am disappointed I won’t be able to participate but guess getting some rest and recuperation time is more important.
Friday 27th October 2017 - 12.06am
Thursday, 26 October 2017
Doctors visit for razorblade throat
Thank goodness I finally got to my doctors appointment this morning. I put a message up on facebook saying how I wish someone could take me as I was feeling dizzy, nauseous and was worried about driving as I had also only had minimal sleep throughout the night. I had a number of offers from people, and cripes how humbling. Anyone who knows me well will know I don’t ask for help very often and actually I didn’t really expect such a response. I don’t know what I expected...I just put the post up without thinking. My lovely sister-in-law came and picked me up, so it was a great chance to have a bit of a catch up. I am now home and tucked up in bed. So a huge thank you to my sissy-in-law and also to everyone else for their thoughts and offers. I am so lucky to have so many willing to jump in and help.
My appointment: The doctor gave me a thorough going over - she is just lovely. I have pharyngitis which actually is just a flash word for sore throat. My glands are really sore and at first she thought it was probably viral but soon discovered I have a high temp (37.9 - not that high if you ask me) so has given me a script for antibiotics just in case I get any worse. She thought with plenty of rest and fluids (water, not cups of tea), I should come right in the next few days. So I am home from work again tomorrow and also have the weekend to recover. Guess I should have listened more closely to my daughter and supervisor after all! The headaches are from the high temperature, hence why I need to drink more water. The dizziness comes from my blocked ear and has nothing to do with the throat or cold. It is purely packed solid with ear wax (how embarrassing) and so she was unable to irrigate it. So I have been given some stuff to put in my ears (yes, both!) at night time for a few nights and then go back in a couple of weeks time so they can then irrigate them - damn, damn and blast! I didn’t really want to have to go back.
The doctor also gave me a bit of a lecture about my fatty liver results. I need to lose some weight and do exercise before the damage is irreversible. It was quite good, she explained the importance of why I need to. So maybe, just maybe this will get me in the right mode. Also the paracodeine which I swallow on a very regular basis is not conducive to my liver and she is going to try and wean me off it and use something else. She wants me to take something called nortriptyline, at night before I go to bed. Details get a bit hazy here...this stuff will re-route from my brain or to my brain, how I feel about the aches and pains I suffer from, and to stretch out the time between doses of paracodeine. From 4 hourly to 6 and then eventually to every 8 hours. I don’t think this will be too much of an issue as sometimes I do that anyhow, without meaning to. I just forget to take it. I worry about taking new medication without the say so of the oncologist as I think my cancer meds take precedence over everything else. When I mentioned this to the doctor, she was great and said they have this app or something where they can check if any new meds can affect your other meds. This came up as good to go...but I still feel a little nervous. I might ring the oncology nurse and pass it by her to check out with one of the oncology doctors. Simply for peace of mind.
Hubby has gone for a walk down the road to get my script filled out. I might go and have some lunch and have a snooze. I have had bugger all sleep throughout the night and my eyes are feeling a little heavy. Think this tired body requires some much needed rest.
Thank you again everyone for your thoughts and concern. For the early morning phone call from an old friend who was concerned when she read my early morning post about my pounding headache - was lovely to catch up and look forward to seeing you in person very soon - for the offers to take me to my appointment - for the offer from my Opotiki whanau to pay for an Uber - for the concern shown by my supervisor - my cousin in Howick who wished she could come and pick me up - my daughter who would have taken time off work to take me - to Shell for picking me up and dropping home again - to everyone! You are all amazing and I am so grateful to, and for all of you.
My appointment: The doctor gave me a thorough going over - she is just lovely. I have pharyngitis which actually is just a flash word for sore throat. My glands are really sore and at first she thought it was probably viral but soon discovered I have a high temp (37.9 - not that high if you ask me) so has given me a script for antibiotics just in case I get any worse. She thought with plenty of rest and fluids (water, not cups of tea), I should come right in the next few days. So I am home from work again tomorrow and also have the weekend to recover. Guess I should have listened more closely to my daughter and supervisor after all! The headaches are from the high temperature, hence why I need to drink more water. The dizziness comes from my blocked ear and has nothing to do with the throat or cold. It is purely packed solid with ear wax (how embarrassing) and so she was unable to irrigate it. So I have been given some stuff to put in my ears (yes, both!) at night time for a few nights and then go back in a couple of weeks time so they can then irrigate them - damn, damn and blast! I didn’t really want to have to go back.
The doctor also gave me a bit of a lecture about my fatty liver results. I need to lose some weight and do exercise before the damage is irreversible. It was quite good, she explained the importance of why I need to. So maybe, just maybe this will get me in the right mode. Also the paracodeine which I swallow on a very regular basis is not conducive to my liver and she is going to try and wean me off it and use something else. She wants me to take something called nortriptyline, at night before I go to bed. Details get a bit hazy here...this stuff will re-route from my brain or to my brain, how I feel about the aches and pains I suffer from, and to stretch out the time between doses of paracodeine. From 4 hourly to 6 and then eventually to every 8 hours. I don’t think this will be too much of an issue as sometimes I do that anyhow, without meaning to. I just forget to take it. I worry about taking new medication without the say so of the oncologist as I think my cancer meds take precedence over everything else. When I mentioned this to the doctor, she was great and said they have this app or something where they can check if any new meds can affect your other meds. This came up as good to go...but I still feel a little nervous. I might ring the oncology nurse and pass it by her to check out with one of the oncology doctors. Simply for peace of mind.
Hubby has gone for a walk down the road to get my script filled out. I might go and have some lunch and have a snooze. I have had bugger all sleep throughout the night and my eyes are feeling a little heavy. Think this tired body requires some much needed rest.
Thank you again everyone for your thoughts and concern. For the early morning phone call from an old friend who was concerned when she read my early morning post about my pounding headache - was lovely to catch up and look forward to seeing you in person very soon - for the offers to take me to my appointment - for the offer from my Opotiki whanau to pay for an Uber - for the concern shown by my supervisor - my cousin in Howick who wished she could come and pick me up - my daughter who would have taken time off work to take me - to Shell for picking me up and dropping home again - to everyone! You are all amazing and I am so grateful to, and for all of you.
Thursday 26th October 2017 - 1.26pm
Razorblades in my throat
Its 2.13am Thursday morning. I don’t quite know what exactly woke me up, the need to go for a wee probably but coming to the realisation that I am in absolute agony. My head is pounding, my throat feels like it has razor blades in it, my jaw is aching and feels tense and my right ear is blocked yet has this muffled ‘boom, boom, boom’ eminating inside of it and I absolutely have no idea what to do with myself...I drag myself out of bed, and manage to take some painkillers though wondering how long before they will kick in. Then I just lie in bed and wait...thinking to myself if someone was to ask how high is the pain? I could easily say it is a 10/10. That was maybe an hour or so ago now. I am relieved ro say the painkillers have kicked in and while my head still pounds and my throat is still sore, the effects have lessened, thank goodness...
I started feeling like this on Monday - labour day after I woke up from a sleep late afternoon. I woke with a pounding headache and the beginnings of a sore throat, which escalated as the evening wore on, by about 8.00pm, the razor blades had pretty much made their presence felt. I took some painkillers quite determined that a sore throat was not going to prevent me from going to work the next day. Especially if I could keep on top of the pain and so I did..both those things. Went to work, took painkillers every four hours on the dot but by 3.00pm I started to feel crappy, with a twist of head spinning and thought bugger this, I am going home before it either gets worse or I have to drive like this in peak hour traffic.
It always seems to be as evening hits or early morning when your symptoms kick into overdrive. Tuesday night those damn razor blades made their presence known. Unfortunately the painkillers decided not to work so it was a damn uncomfortable night, trying not to swallow too much, drinking warm water, gargling with water and salt but managing to go to sleep, woke up early Wednesday with the same symptoms deciding a visit to the doctor was needed. If my throat is that sore, there must be a reason and it needs to be checked out. So after the usual inner struggle with myself I decided to stay home and at 8.30am (opening time), I rang the doctors to make an appointment and would you believe at the start of opening hours, they had nothing available for that whole day!!!! Was it urgent she said? Is an extremely sore throat and constant pounding headaches in someone who has terminal cancer urgent? I didn’t really think so...but I was not happy. She said she would ring me if any cancellations came up. I got no phone call, so I presume no cancellations or she said that to everyone, or else everyone said their symptoms were urgent and they HAD to have an appointment. As the day progresses to about midday, I start to feel much better and then the guilt starts to kick in. OMG, I could have gone to work after all, I could sit at my desk working like this...but within a couple of hours, I started to feel crap again, quite thankful I hadn’t gone to work after all. It happens every time without fail - I always get a case of the guilts. I have always been like this, I have often said this, even when the girls were little and I had to stay home with them because they were unwell, I would feel guilty. I always felt torn between my family and work. Of course your family comes first, but part of providing for your family is having a stable job where you are able to pay the bills and buy food etc. Work has always been good to me and so one of the ways I could give back, was by being a good employee who doesn’t take the mickey. I still have that mentality now and even with having a terminal illness, feel guilty when I am away, which lately seems to have been a lot. My fear is that because I am away more than usual, they will think I am more trouble than I am worth and decide to get rid of me.
I was having an inner turmoil with myself this afternoon, wondering if I should go to work in the morning before I go to the doctors at 10.30 and see what the doc says as to whether I go back afterwards. My younger daughter is telling me to stay home and rest, but I am wondering do I really need to? My supervisor at work is telling me to put my health first and to listen to my daughter...and I know they are both right, its just me and the way I am.
But as I sit up awake at this early hour of the morning and with being so distressed a little earlier, I know something definitely is not right and so my body needs some down time to recuperate. Bloody terrible timimg though. New systems at work which I am still learning and I feel like this puts me back quite a bit, and actually I feel like I was doing pretty ok picking things up. But its the retaining of the information I am worried about. The more you do them, the more confident you become.
But my younger daughter says this is how she felt last week and was home in bed for quite a number of days. She didn’t go to the doctors but sore throats always make me a little nervous. When the girls were little, I was always worried they could have strep throat which could then lead to rheumatic fever and then my baby had two bouts of glandular fever at ages 7 and again at 13. One of the initial symptoms of it was the extreme sore throat and I remember the nightmare of a time she had both times. The fatigue especially, not just for a few months, but up to a year. My poor girl, every time she says she has a sore throat now, I inwardly panic. So with this bloody, not just sore throat, but bloody sore throat, I would feel a whole lot better getting it checked out. Not to mention get a medical certificate for work. Its a short week thankfully...
I wonder though, does having this terminal diagnosis complicate things? I wouldn’t really think so but the worry is there. Maybe its just a case of like the other two said today, with my health concerns I need to be careful. What was it I used to say? “Be kind to myself - be kind to my body”
Its been a couple of hours since I first woke up and took something, the headache is still there, throat still a little sore (though a million times better thank goodness) and the muffled noise in my blocked ear is still ‘booming’ away and feels like phlegm is pouring down the back of my throat - ugh!
Roll on 10.30, I just want to go doctors and find out what is going on and put my mind at rest. Its quite lonely being awake at this time. No one else awake to talk to, or to at least hear anyone else talking amongst themselves. Even the cats are fast asleep.
Cripes, I’d love a lolly or something sweet right about now...and then back off to sleep for a few hours would be great. Actually getting rid of this damn headache would be quite good too.
Thursday 27th October 2017 - 3.33am
I started feeling like this on Monday - labour day after I woke up from a sleep late afternoon. I woke with a pounding headache and the beginnings of a sore throat, which escalated as the evening wore on, by about 8.00pm, the razor blades had pretty much made their presence felt. I took some painkillers quite determined that a sore throat was not going to prevent me from going to work the next day. Especially if I could keep on top of the pain and so I did..both those things. Went to work, took painkillers every four hours on the dot but by 3.00pm I started to feel crappy, with a twist of head spinning and thought bugger this, I am going home before it either gets worse or I have to drive like this in peak hour traffic.
It always seems to be as evening hits or early morning when your symptoms kick into overdrive. Tuesday night those damn razor blades made their presence known. Unfortunately the painkillers decided not to work so it was a damn uncomfortable night, trying not to swallow too much, drinking warm water, gargling with water and salt but managing to go to sleep, woke up early Wednesday with the same symptoms deciding a visit to the doctor was needed. If my throat is that sore, there must be a reason and it needs to be checked out. So after the usual inner struggle with myself I decided to stay home and at 8.30am (opening time), I rang the doctors to make an appointment and would you believe at the start of opening hours, they had nothing available for that whole day!!!! Was it urgent she said? Is an extremely sore throat and constant pounding headaches in someone who has terminal cancer urgent? I didn’t really think so...but I was not happy. She said she would ring me if any cancellations came up. I got no phone call, so I presume no cancellations or she said that to everyone, or else everyone said their symptoms were urgent and they HAD to have an appointment. As the day progresses to about midday, I start to feel much better and then the guilt starts to kick in. OMG, I could have gone to work after all, I could sit at my desk working like this...but within a couple of hours, I started to feel crap again, quite thankful I hadn’t gone to work after all. It happens every time without fail - I always get a case of the guilts. I have always been like this, I have often said this, even when the girls were little and I had to stay home with them because they were unwell, I would feel guilty. I always felt torn between my family and work. Of course your family comes first, but part of providing for your family is having a stable job where you are able to pay the bills and buy food etc. Work has always been good to me and so one of the ways I could give back, was by being a good employee who doesn’t take the mickey. I still have that mentality now and even with having a terminal illness, feel guilty when I am away, which lately seems to have been a lot. My fear is that because I am away more than usual, they will think I am more trouble than I am worth and decide to get rid of me.
I was having an inner turmoil with myself this afternoon, wondering if I should go to work in the morning before I go to the doctors at 10.30 and see what the doc says as to whether I go back afterwards. My younger daughter is telling me to stay home and rest, but I am wondering do I really need to? My supervisor at work is telling me to put my health first and to listen to my daughter...and I know they are both right, its just me and the way I am.
But as I sit up awake at this early hour of the morning and with being so distressed a little earlier, I know something definitely is not right and so my body needs some down time to recuperate. Bloody terrible timimg though. New systems at work which I am still learning and I feel like this puts me back quite a bit, and actually I feel like I was doing pretty ok picking things up. But its the retaining of the information I am worried about. The more you do them, the more confident you become.
But my younger daughter says this is how she felt last week and was home in bed for quite a number of days. She didn’t go to the doctors but sore throats always make me a little nervous. When the girls were little, I was always worried they could have strep throat which could then lead to rheumatic fever and then my baby had two bouts of glandular fever at ages 7 and again at 13. One of the initial symptoms of it was the extreme sore throat and I remember the nightmare of a time she had both times. The fatigue especially, not just for a few months, but up to a year. My poor girl, every time she says she has a sore throat now, I inwardly panic. So with this bloody, not just sore throat, but bloody sore throat, I would feel a whole lot better getting it checked out. Not to mention get a medical certificate for work. Its a short week thankfully...
I wonder though, does having this terminal diagnosis complicate things? I wouldn’t really think so but the worry is there. Maybe its just a case of like the other two said today, with my health concerns I need to be careful. What was it I used to say? “Be kind to myself - be kind to my body”
Its been a couple of hours since I first woke up and took something, the headache is still there, throat still a little sore (though a million times better thank goodness) and the muffled noise in my blocked ear is still ‘booming’ away and feels like phlegm is pouring down the back of my throat - ugh!
Roll on 10.30, I just want to go doctors and find out what is going on and put my mind at rest. Its quite lonely being awake at this time. No one else awake to talk to, or to at least hear anyone else talking amongst themselves. Even the cats are fast asleep.
Cripes, I’d love a lolly or something sweet right about now...and then back off to sleep for a few hours would be great. Actually getting rid of this damn headache would be quite good too.
Thursday 27th October 2017 - 3.33am
Monday, 23 October 2017
Lightness comes with a long weekend
God, how much lighter I feel knowing I have a third day to my weekend still to come! Usually on a Sunday night I am kicking myself because the next day is Monday and another week of work starts. Dragging myself around the house getting my lunch ready, picking clothes out to wear the next day, fighting with myself because I know I need to go to bed early yet not wanting to. But tonight, I feel so relaxed just knowing I can sleep in again tomorrow morning and have another whole day to myself. This doesn’t particularly help me in my mission to talk myself into how good it is to stick it out fulltime at work. Imagine feeling like this every Sunday...knowing you have that third day to chill out. Aahhhh.......Oh well, dreams are free and guess I’ll just have to make the most of these long weekends as they come round.
Its been a lovely few days, participated in Diwali celebrations Thursday night, had lunch with my big girl yesterday after we potted round getting a few things done of which one was buying myself a new mobile phone. I’m so excited and goddam I bloody love it! What took me so long getting one???? I know, the guilt of spending so much money on something so small and what I felt was frivolous and un-necessary. But actually when I really think about it, I don’t think it either of those things. And I figure, goddam I work hard, I drag myself off to work fulltime even though I’m not the best of health, keep the household going financially and I just figured “fuck it, I deserve it!’ and mobiles are such a big part of our lives now. It’s a means of contact with others when using landlines isn’t an option. Actually if it wasn’t for hubby’s mum, I might even have contemplated cutting the landline off and just using the mobile.
Today I was able to catch up with a friend whom I have not seen for so long and I wonder what tomorrow will bring. I have a bit of a bee in my bonnet at the moment about getting a start on my Christmas shopping so who knows. I might go off tomorrow and get a start on that. Either way, its my day off and I can spend it however I choose.
I had been invited to a couple of birthday celebrations for Saturday night. I had said no to both of them. On one hand I was recently moaning about having no social life in the weekend evenings and then I get two invites for the same evening and say no to both of them. I have my reasons why I didn’t attend either of them and don’t feel I need to go into any detail to explain myself. I don’t say no for the hell of it or to be spiteful or rude, I usually just don’t have it in me to go. I would assume that people who know I have breast cancer will understand without any long winded explanations. But in actuality, one of these celebrations I would very much liked to have gone to except it was out of town and so for a number of reasons felt I wasn’t able to go.
It has taken me to get cancer to realise I don’t have to offer an explanation of any kind. I have days where I just don’t feel like doing stuff and so I won’t. I try not to muck people around. If I say I will go somewhere, I try very hard to stick to that decision but there are times when I just don’t feel up to it. I think because I ‘look well’, people assume I am and so expect me to go on with life as normal. But there are days when I just am unable to do that or just don’t want to. We have a social event coming up at work soon - I won’t be attending. In this instance, I simply don’t want to. My weekends are precious and they go so quickly as it is. Work already has me for 40 hours each week, that is enough. Do I feel guilty? Not in the slightest. I’m over doing things because I feel obliged although that still kicks in every now and then but it is getting less. Maybe I do have an attitude problem, a sense of entitlement because I have the dreaded ‘cancer’. My attitude has definitely changed, not necessarily for the better either. At least I acknowledge my faults. I’m just not sure I care enough to change them.
Monday 23rd October 2017 - 12.11am
Its been a lovely few days, participated in Diwali celebrations Thursday night, had lunch with my big girl yesterday after we potted round getting a few things done of which one was buying myself a new mobile phone. I’m so excited and goddam I bloody love it! What took me so long getting one???? I know, the guilt of spending so much money on something so small and what I felt was frivolous and un-necessary. But actually when I really think about it, I don’t think it either of those things. And I figure, goddam I work hard, I drag myself off to work fulltime even though I’m not the best of health, keep the household going financially and I just figured “fuck it, I deserve it!’ and mobiles are such a big part of our lives now. It’s a means of contact with others when using landlines isn’t an option. Actually if it wasn’t for hubby’s mum, I might even have contemplated cutting the landline off and just using the mobile.
Today I was able to catch up with a friend whom I have not seen for so long and I wonder what tomorrow will bring. I have a bit of a bee in my bonnet at the moment about getting a start on my Christmas shopping so who knows. I might go off tomorrow and get a start on that. Either way, its my day off and I can spend it however I choose.
I had been invited to a couple of birthday celebrations for Saturday night. I had said no to both of them. On one hand I was recently moaning about having no social life in the weekend evenings and then I get two invites for the same evening and say no to both of them. I have my reasons why I didn’t attend either of them and don’t feel I need to go into any detail to explain myself. I don’t say no for the hell of it or to be spiteful or rude, I usually just don’t have it in me to go. I would assume that people who know I have breast cancer will understand without any long winded explanations. But in actuality, one of these celebrations I would very much liked to have gone to except it was out of town and so for a number of reasons felt I wasn’t able to go.
It has taken me to get cancer to realise I don’t have to offer an explanation of any kind. I have days where I just don’t feel like doing stuff and so I won’t. I try not to muck people around. If I say I will go somewhere, I try very hard to stick to that decision but there are times when I just don’t feel up to it. I think because I ‘look well’, people assume I am and so expect me to go on with life as normal. But there are days when I just am unable to do that or just don’t want to. We have a social event coming up at work soon - I won’t be attending. In this instance, I simply don’t want to. My weekends are precious and they go so quickly as it is. Work already has me for 40 hours each week, that is enough. Do I feel guilty? Not in the slightest. I’m over doing things because I feel obliged although that still kicks in every now and then but it is getting less. Maybe I do have an attitude problem, a sense of entitlement because I have the dreaded ‘cancer’. My attitude has definitely changed, not necessarily for the better either. At least I acknowledge my faults. I’m just not sure I care enough to change them.
Monday 23rd October 2017 - 12.11am
Monday, 16 October 2017
Waiting room, Oncology - building 8 - 16/10/17
My thoughts as I wait my turn:
I hate this room - this waiting room full of people who have cancer and their loved ones. Most people have someone with them - I am alone. But it doesn’t worry me. It’s only when I’ve had scans and waiting to receive results that I feel I need someone with me - in case you get that awful and devastating news, that the cancer has shifted further afield.
There’s something terribly depressing about this room. We’re all waiting, the doctors come to call out a name and you look at them expectantly wondering if it will be your name they call. You look at the other people here and wonder what sort of cancer they have. Some look well like myself, others have headwear on and so you know they have had or are having ongoing chemo. Having poison poured through their veins in the hope that it will kill off the cancer or at least send it into submission for eternity (I don’t really know what chemo does).
I still think this appointment is a mistake. I should only be here for my treatment and then be on my way to work. Guess I’ll find out soon enough. Briefly the thought goes through my mind, did they forget something at last months appointment? Did they see something in last months blood tests?
I can hear the people around me chatting. I don’t want to catch anyone’s eye - I don’t feel like smiling at anyone - I don’t feel like talking or being sociable. I feel like today is not such a great day in my head. I feel like the positivity has seeped out and completely left me void. I am an empty cancerous shell. I have the realisation I am MBC - with no cure. I mean of course I have known it all this time and most of the time I just get on with it. But sometimes it smacks me in the face all over again. I wish I could just get on with life and enjoy it but the constant aches and tiredness are a never ending reminder and so instead of enjoying time, you spend it hating cancer, feeling anxious, hating the ongoing symptoms you exhibit and its bloody exhausting to be honest.
Treatment time:
Oncology appointment over, now down at acute oncology for treatment. No sinister reason for the call back this month - she just wanted to check something out. We had stopped some tablets I was taking, not cancer related and just making sure no issues arising from it.
My calcium levels are elevated which could be due to being dehydrated at the time of the bloodtests. These are being checked again today and so the nurse has taken them but is reluctant to start the zometa infusion until she finds out from the oncologist if we need to wait on blood results to see if I need a drip to help hydrate me before the infusion.
While I wait for the nurse, I can see a tow truck is hooking a car up and the hospital clerk has just come in to make sure we all have our oncology paperwork on our dashboards. Getting stricter and who can blame them...these carparks are for the convenience of those of us who need them. Its like disabled carparks - they are there for a reason and shouldn’t be abused.
Nurse has come back - oncologist just wants to see trend of calcium levels as they have been on the rise for the last three months . No waiting around required - hook up of zometa infusion starting and I’ll be out of here soon.
This little unit ‘acute oncology’ is so much nicer than building 8. Maybe because it is smaller, not so many people. I just find ‘8’ so depressing. Perhaps its simply because of what it stands for...
*********************************************************************************
These were my scribblings in my notebook today while I was waiting to be seen and during treatment.
I won’t see the oncologist for another three months, so January 2018. They will send me for a CT scan before so I can get results at the same time. These are the results that make me nervous - they show if the cancer has spread. Its a constant fear that is always in the back of your mind...but for now I will continue on the same regime since it’s working well
Monday 16th October 2017
I hate this room - this waiting room full of people who have cancer and their loved ones. Most people have someone with them - I am alone. But it doesn’t worry me. It’s only when I’ve had scans and waiting to receive results that I feel I need someone with me - in case you get that awful and devastating news, that the cancer has shifted further afield.
There’s something terribly depressing about this room. We’re all waiting, the doctors come to call out a name and you look at them expectantly wondering if it will be your name they call. You look at the other people here and wonder what sort of cancer they have. Some look well like myself, others have headwear on and so you know they have had or are having ongoing chemo. Having poison poured through their veins in the hope that it will kill off the cancer or at least send it into submission for eternity (I don’t really know what chemo does).
I still think this appointment is a mistake. I should only be here for my treatment and then be on my way to work. Guess I’ll find out soon enough. Briefly the thought goes through my mind, did they forget something at last months appointment? Did they see something in last months blood tests?
I can hear the people around me chatting. I don’t want to catch anyone’s eye - I don’t feel like smiling at anyone - I don’t feel like talking or being sociable. I feel like today is not such a great day in my head. I feel like the positivity has seeped out and completely left me void. I am an empty cancerous shell. I have the realisation I am MBC - with no cure. I mean of course I have known it all this time and most of the time I just get on with it. But sometimes it smacks me in the face all over again. I wish I could just get on with life and enjoy it but the constant aches and tiredness are a never ending reminder and so instead of enjoying time, you spend it hating cancer, feeling anxious, hating the ongoing symptoms you exhibit and its bloody exhausting to be honest.
Treatment time:
Oncology appointment over, now down at acute oncology for treatment. No sinister reason for the call back this month - she just wanted to check something out. We had stopped some tablets I was taking, not cancer related and just making sure no issues arising from it.
My calcium levels are elevated which could be due to being dehydrated at the time of the bloodtests. These are being checked again today and so the nurse has taken them but is reluctant to start the zometa infusion until she finds out from the oncologist if we need to wait on blood results to see if I need a drip to help hydrate me before the infusion.
While I wait for the nurse, I can see a tow truck is hooking a car up and the hospital clerk has just come in to make sure we all have our oncology paperwork on our dashboards. Getting stricter and who can blame them...these carparks are for the convenience of those of us who need them. Its like disabled carparks - they are there for a reason and shouldn’t be abused.
Nurse has come back - oncologist just wants to see trend of calcium levels as they have been on the rise for the last three months . No waiting around required - hook up of zometa infusion starting and I’ll be out of here soon.
This little unit ‘acute oncology’ is so much nicer than building 8. Maybe because it is smaller, not so many people. I just find ‘8’ so depressing. Perhaps its simply because of what it stands for...
*********************************************************************************
These were my scribblings in my notebook today while I was waiting to be seen and during treatment.
I won’t see the oncologist for another three months, so January 2018. They will send me for a CT scan before so I can get results at the same time. These are the results that make me nervous - they show if the cancer has spread. Its a constant fear that is always in the back of your mind...but for now I will continue on the same regime since it’s working well
Monday 16th October 2017
Sunday, 15 October 2017
Giving back day
I was a volunteer for the pink ribbon street appeal today for a couple of hours. I had my ‘knowledge beats breast cancer’ tee-shirt on along with some pretty pink fairy wings and a pink fluffy tiara. It felt good to have a bit of fun while doing something so important for such a serious issue. This is my own personal feelings, not everyone feels the same way and we are all perfectly entitled to feel the way we do. It was gteat to interact with people especially the kids. They seemed to get a bit of a kick to see an old gal dressed like a pink I don’t know what...I’d see them looking at me or pointing me out to whomever they were with and so I’d give them a wee wave, and nine times out of ten they’d come back with their donation looking ever so proud. Just gorgeous! I have to say though standing for two hours was quite tough and by the end of it, my back was aching. Not my feet which have to hold this weight up, but my back. Cripes, these last two collections, today and daffodil day back in August help highlight how bloody useless I am. Daffodil day I collected late afternoon, and was exhausted by the end of it and we were only there for an hour, so I decided volunteering needs to be done in the morning. But now after today, apparently I may need to be a ‘sit down’ volunteer. Anything else???? But anyhow, regardless of the aches I thoroughly enjoyed myself. I got to meet new people and make people smile.
I am so glad to say this week has been a much better week. I have felt relatively human again, albeit a bit of a stupid one. Major changes happening at work and so the way we all do our tasks has completely changed. I will be using a completely different system as to the majority of those at work...just a small handful of us using it and so training to use it within a live system is quite scary. I know without a doubt I will pick it up but goddam it is so bloody frustrating for the moment. I want to know it all NOW! And because I don’t, I feel so damn daft. So I have been going home feeling completely frazzled and brain dead. But I think I have it relatively easy compared to the rest of the staff.
I was shouted to a Chick Flicks movie night on Wednesday night. We saw ‘Mountain between us’ which has Kate Winslet and Idris Elba in it. Brilliant movie - I thoroughly enjoyed it. I was bloody exhausted mind you, and my eyes were starting to get heavy but I managed to make it through to the end. And good golly miss molly, thats not where it ends! Hubby and I went to my cousins last night for a barbeque and a few drinks and yes, I even had a couple of red wines! It was a lovely evening spent with family whom I haven’t seen for many years, and getting to see a cousin and her husband while here from Brisbane. They were flying back home today. So all in all, it has been a pretty busy and social week for me. Admittedly, to go out during the week especially after being at work all day, sometimes I have to dig pretty deep to make myself go. Its not that I don’t want to, its just that damn word again ‘tiredness’. Once I get there, I am ok...its simply a case of getting myself there. Other times I simply have nothing left in the tank and have to stay home to refuel, definitely if its a working day the following day. But it really does make a difference getting out and not always being stuck within four walls. Doesn’t seem to matter which four walls they are, whether it be the lounge walls or the bedroom walls. They are a safe haven most of the time but can also feel prisonlike.
And so what does this coming week bring? I have an oncology appointment Monday morning followed by my usual infusion. I will go on my own as no test results or anything, so no necessity to take anyone to take notes. And that way, I don’t need to drop anyone off at home, I can go directly to work after its all done and cut down another hour that I could have been out of the office. Next weekend is a long one, so the prospect of a three day weekend is bloody wonderful!
It really will be the countdown to Christmas then...
Sunday 15th October 2017 - 12.05am
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