As I lie here in the dark alone except for Ember, (our black cat) who is lying right up against me, fireworks going off all around, I feel a wave of sadness and I am scared. Thoughts have gone back to the neck gland and the worry of what it could mean. I am wondering should I start clearing out the crap in my drawers? Should I put on hold the plans I have to go see my sister in Aussie? What if I am going to need chemo? Does that mean I will have to chuck my job? How will we cope financially since I am the income earner and pay all the bills? I feel sick to my stomach, and I feel so so alone. I don't want to burden anyone and its hard to explain to others the gravity of how I feel. This is what having a terminal illness does to you. Maybe terminal is too extreme...lets say incurable. I want to cry but I don't want to because I hate crying. I will just lie here with a stiff upper lip and stew on things until I stew myself to sleep.
I feel a sense of loneliness with the girls having grown up. They are getting older and have lives of their own and thats how it should be but I miss doing things with them. We don't even have dinner together anymore. Even the basics have gone by the wayside. They don't really need me anymore so I guess my job is done. I don't mean that in an awful way, its the circle of life isn't it. One day I won't be here and they will feel it. But in the meantime, I refuse to be one of those mothers who hangs onto her kids like a limpet and has to be going off out with them everywhere.
I hate that this has happened. I try so hard (and most of the time its easy) to be positive and to continue living my life but there are times when I want to rip my hair out and scream til I am blue in the face. This is so unfair...isn't it enough that I lost David all those years ago and that I lost my two babies before we were finally successful in having our two beautiful girls. Isn't it enough that I have had to take over the lone struggle of being responsible for running the household (financially) because someone decided to chuck their job and unsuccessful in finding another one...isn't it enough that I have to put on a brave face for everyone else because people can't cope with the reality...isn't it just enough?
Thank goodness I am a strong person, or am I? You just have to handle shit, what other choice do you have...
Do I feel better after getting this all out? No I don't.
I feel sick to my stomach and I feel mad - mad and scared
Saturday 5th November, 2016 - 11.34pm
Saturday, 5 November 2016
Friday, 4 November 2016
Be kind to my body day today / oncology update
Last night hubby lit a fire out the back in the umu hole, to burn twigs, small branches and leaves from trees he had cut down earlier in the year. The 'kids' were all out, it felt a bit lonely so I sat outside with hubby watching the fire burn. Where once upon a time I would have plonked myself on the ground, I sat myself in the beach chair I had been given (since I can no longer lie on the ground at the beach either), cuppa in hand, mobile phones and ipad beside me and enjoyed some nice quier time watching the beauty of the flames. Unfortunately I also had a few small embers blow my way of which one landed on my leg without me realising until it grew extremely warm in the one spot, so,had to jump up and shake it off! Blow me down, then another landed right beside me on the plastic of the chair I was sitting on, so had to jump up quickly (no such thing for me anymore!) again and brush it off. Husband getting a good laugh out of it, actually so did I. Probably the fastest I have moved in a long time, or at least in the last 12 months.
The fire was letting off so much heat, and I was a bit worried that an ember might land on either my implant or my prosthesis so kind of kept my arm over my implant. A new prosthesis you can buy, not quite so easy with an implant eh...
Unfortunately this morning when I woke up, my body was completely aching all over...shoulders, back, feet and I had no oomph so decided to stay home from work or at the very least have a bit of a lie in and go in late. Me thinks it is from sitting outside for those 3 or so hours in a beach chair and with it chilling down as the evening wore on. Anyhow, I tossed and turned with the decision whether to stay, whether to go, all the while trying to remind myself that sometimes I need to take time out and be kind to my body and it really felt like this was one of those days. Unfortunately I have always felt guilty when I have stayed home, even when my girls were little and were sick. The other factor is always money - what don't we pay when I haven't had a full week of work? I mean we do ok but I hate dipping into our meagar savings to make up the shortfall. Crap isn't it, when you have an incurable cancer and you still have to worry about bloody money.
So now this stupid cancer has an effect on how I chill out at the beach ((I even have to re-think the beach chair idea) and when we are having a fire out in the backyard. This has always been a past time which we as a family have enjoyed, usually toasting marshmallows over it while getting smoked out and sore eyes - its fun..but smelly.
But on the up side, I have stayed home today and was blessed with a visit from an old work colleague whom I have not seen since he moved jobs. It was such a surprise, it completely blew me away and has just made my week.
Oncology update:
I had a phone call yesterday afternoon from the oncologist whom we saw the other week. In a previous post I had mentioned about telling the oncologist about how one of my neck glands feels a little sore from time to time but on a regular basis. She had examined it and could feel something but when I would turn my head from side to side, it would disappear. Originally she had said they would keep an eye on it but it has now been decided to send me for an ultrasound to see what they can find. If there is anything of concern, a biopsy will be done at the same time. So now, it is must a matter of waiting for an appointment.
For the rest of the afternoon and even as I think about it now and type this, I feel ill in the pit of my tummy with the fear of "could this be cancer growing in another spot of my body". What if it is in my gland, that means it is not just in my bones - it is in a soft tissue. I have been told if you have cancer in your bones, you can live for years. How does it change if it moves to soft tissue? And then when I went on fb not long ago, I read something about someone having BC in one of their neck glands. I had to close it down quickly, I couldn't face seeing it and couldn't believe the timing of it. The fear is always there. Nothing is predictable.
I am impatient to have this ultrasound done but I am terrified of what they will find. Its pointless getting in too much of a funk about it, its a waste of energy and will just drag me down, but believe me, its there (the worry), sitting in the back of my mind, churning my tummy over. Lets hope its all for nothing...
Friday 4th November, 2016 - 3.46pm
The fire was letting off so much heat, and I was a bit worried that an ember might land on either my implant or my prosthesis so kind of kept my arm over my implant. A new prosthesis you can buy, not quite so easy with an implant eh...
Unfortunately this morning when I woke up, my body was completely aching all over...shoulders, back, feet and I had no oomph so decided to stay home from work or at the very least have a bit of a lie in and go in late. Me thinks it is from sitting outside for those 3 or so hours in a beach chair and with it chilling down as the evening wore on. Anyhow, I tossed and turned with the decision whether to stay, whether to go, all the while trying to remind myself that sometimes I need to take time out and be kind to my body and it really felt like this was one of those days. Unfortunately I have always felt guilty when I have stayed home, even when my girls were little and were sick. The other factor is always money - what don't we pay when I haven't had a full week of work? I mean we do ok but I hate dipping into our meagar savings to make up the shortfall. Crap isn't it, when you have an incurable cancer and you still have to worry about bloody money.
So now this stupid cancer has an effect on how I chill out at the beach ((I even have to re-think the beach chair idea) and when we are having a fire out in the backyard. This has always been a past time which we as a family have enjoyed, usually toasting marshmallows over it while getting smoked out and sore eyes - its fun..but smelly.
But on the up side, I have stayed home today and was blessed with a visit from an old work colleague whom I have not seen since he moved jobs. It was such a surprise, it completely blew me away and has just made my week.
Oncology update:
I had a phone call yesterday afternoon from the oncologist whom we saw the other week. In a previous post I had mentioned about telling the oncologist about how one of my neck glands feels a little sore from time to time but on a regular basis. She had examined it and could feel something but when I would turn my head from side to side, it would disappear. Originally she had said they would keep an eye on it but it has now been decided to send me for an ultrasound to see what they can find. If there is anything of concern, a biopsy will be done at the same time. So now, it is must a matter of waiting for an appointment.
For the rest of the afternoon and even as I think about it now and type this, I feel ill in the pit of my tummy with the fear of "could this be cancer growing in another spot of my body". What if it is in my gland, that means it is not just in my bones - it is in a soft tissue. I have been told if you have cancer in your bones, you can live for years. How does it change if it moves to soft tissue? And then when I went on fb not long ago, I read something about someone having BC in one of their neck glands. I had to close it down quickly, I couldn't face seeing it and couldn't believe the timing of it. The fear is always there. Nothing is predictable.
I am impatient to have this ultrasound done but I am terrified of what they will find. Its pointless getting in too much of a funk about it, its a waste of energy and will just drag me down, but believe me, its there (the worry), sitting in the back of my mind, churning my tummy over. Lets hope its all for nothing...
Friday 4th November, 2016 - 3.46pm
Sunday, 30 October 2016
A glorious weekend in Auckland...
Wow!!! What a glorious weekend we have had - both Saturday and Sunday! Both days I have sat out on the front deck soaking up the rays. Makes me so grateful to be alive and doing so well!!!! In between enjoying the sunshine, I have even been a little productive. I was given some swinging baskets on Friday (thank you again missy) and so I was a little impatient to get them sorted so hurriedly brought a few plants and popped them in and quickly hung them up out the front. This is my new little piece of paradise simce our back area is such a mess and so I want it to look pretty. Will be better once the plants grow and you can actually see them...
Even the cats are enjoying soaking up the sun 😎☀️🌞
And today while I was sitting out here I suddenly felt the urge to go out and get myself some summer clothes. I dislike shopping immensely and of course the end result is always that I end up with aching feet but I had a couple of vouchers in my purse so I was out that door before I could talk myself out of it...
I slightly overspent more than the vouchers but what the hell, I don't often spend money on myself so I am super happy to say I have come home with a bit of a stash. And yup...my feet are hurting but the weather is so damn beautiful, I just don't care. Roll on summer I say. I am so excited for it. I missed out completely on summer last year as I was either recovering from my double mastectomy, recovering from the horrendous infection I had or in and out constantly of hospital/s (juggling between North Shore and Middlemore).
We have even been for our first beach trip to Martins Bay last weekend on Sunday (Labour weekend). Just hubby, older child and myself. Child and myself went for a swim - freezing bloody cold but completely invigorating. Unfortunately when we got out, I decided to lie down on the grass to dry off, so I was flipping from back to tummy, back to tummy and when it was time to get up to pack the car up and come home again, it was 'ok' - I was as slow as an ol' turtle but when we got home (an hours drive) - I was in pure agony...obviously I am past the days of lying on the hard ground plus sitting in the car for any length of time also takes its toll on me. In general it is hard to get up out of a seat but hey, thats ok...
Goddam, it is good to be alive - funny how your attitude perks up when theres a bit of sun...
Sunday 30th October 2016 - 3.31pm
Even the cats are enjoying soaking up the sun 😎☀️🌞
I slightly overspent more than the vouchers but what the hell, I don't often spend money on myself so I am super happy to say I have come home with a bit of a stash. And yup...my feet are hurting but the weather is so damn beautiful, I just don't care. Roll on summer I say. I am so excited for it. I missed out completely on summer last year as I was either recovering from my double mastectomy, recovering from the horrendous infection I had or in and out constantly of hospital/s (juggling between North Shore and Middlemore).
We have even been for our first beach trip to Martins Bay last weekend on Sunday (Labour weekend). Just hubby, older child and myself. Child and myself went for a swim - freezing bloody cold but completely invigorating. Unfortunately when we got out, I decided to lie down on the grass to dry off, so I was flipping from back to tummy, back to tummy and when it was time to get up to pack the car up and come home again, it was 'ok' - I was as slow as an ol' turtle but when we got home (an hours drive) - I was in pure agony...obviously I am past the days of lying on the hard ground plus sitting in the car for any length of time also takes its toll on me. In general it is hard to get up out of a seat but hey, thats ok...
Goddam, it is good to be alive - funny how your attitude perks up when theres a bit of sun...
Sunday 30th October 2016 - 3.31pm
Thursday, 20 October 2016
Not such a good day...
Have had a rough few days but without trying to let it show to anyone...I am so over the cancer thing. I feel like my life is consumed by it at the moment - I wonder if that thought will change as time goes by.
A combination of things have set me off:
I feel so resentful that this has happened - and I want to bury my head in the sand and forget forever it is happening. IT IS SO DAMN UNFAIR......................
On the plus side, no side effects from yesterday's infusion, apart from feeling slightly stiffer than normal in my joints but that is easily dealt with. Thank goodness for no more awful side effects.
I need to try and remember there are always positives and at times we all need to be reminded of them. But unfortunately today, its not quite helping with the feeling of self-pity and I just keep thinking I AM GOING TO DIE OF THIS SHIT DISEASE AND I DON'T KNOW WHEN...and how much pain will I be in and what indignities will I have to endure...
I just want to break down and sob my heart right about now...
Does this get better as times goes on and I get 'used' to it? I am going to drive you all insane as well as myself.
Sorry guys...
Thursday 20th October 2016 - 1.26pm
A combination of things have set me off:
- I joined a closed group on fb for those with metastatic bc and it can be a little overwhelming to see some of the posts. They are a mixture of good and 'not so good', but it is definitely a great tool and support network for any queries I may have, or may want to get something off my chest without posting it on here where loved ones can see and read it
- I attended a webinar on Tuesday night for those living with advanced bc (it all means the same - metastatic / advanced / secondary / incurable / terminal)
- I have done a video for work to put on their fb page and other social media, and I was sent a copy of it to watch and listen to yesterday afternoon. I cried my heart out after I watched it. I hear myself saying those words, but to actually see myself say them, and to see myself get upset - its a little confronting. I certainly don't regret doing it - its far too important to not share it. I am kind of dreading it being put up - to opening myself up so widely in such a visual way to firstly, people I work with and secondly, to complete strangers. Words on paper is one thing, but to be able to see me visually is something different.
- And then to top it off, a lovely gentleman whom we had dealings with through work passed away very suddenly yesterday morning. My dealings with him were quite minimal but it was such a shock to hear, and it has brought home my own mortality
I feel so resentful that this has happened - and I want to bury my head in the sand and forget forever it is happening. IT IS SO DAMN UNFAIR......................
On the plus side, no side effects from yesterday's infusion, apart from feeling slightly stiffer than normal in my joints but that is easily dealt with. Thank goodness for no more awful side effects.
I need to try and remember there are always positives and at times we all need to be reminded of them. But unfortunately today, its not quite helping with the feeling of self-pity and I just keep thinking I AM GOING TO DIE OF THIS SHIT DISEASE AND I DON'T KNOW WHEN...and how much pain will I be in and what indignities will I have to endure...
I just want to break down and sob my heart right about now...
Does this get better as times goes on and I get 'used' to it? I am going to drive you all insane as well as myself.
Sorry guys...
Thursday 20th October 2016 - 1.26pm
Wednesday, 19 October 2016
Oncology appointment - 19 Oct 16
Today was my oncology appointment before going to have the infusion and hormone shot. It was great that we pretty much got in on time or so it felt like. Not too much happened which I expected. My baby was my note taker today as my mate had work commitments and she did a bloody awesome job.
I asked about the aches I get in my back, how my feet throb but forgot to mention that my hands can also get quite sore. I had always put it down to the exemestane tablets I am on, but she said it is probably a combination of everything including the zometa infusion. But its copable, so thats ok. A lesion had been picked up on my lung at last CT scan which they were pretty sure it had nothing to do with the cancer and they still maintain that. They will check it when I am due to go for next lots of scans but at last acan, it was very miniscule. If it has grown in that time, it could potentially be cancer. They don't seem too fussed, so I'm not either.
I have had a slightly sore right neck gland and sometimes I can feel it when I swallow, so I queried that today as well. I had gone to my GP when I first felt it but that's as far as it went. Because it has been on and off over a period of a few months now, I thought I should question it with the cancer doc's. The oncologist (a different lady today) said she could feel something, but when I turned my head either way, she couldn't so she says it isn't a swollen gland but there is so something there. Nothing has shown up on scans but she has made a note of it and they will keep an eye on it. While I don't feel the need to panic about either of these things, a part of you does wonder, "shit has it spread" but I just don't see the point in worrying until I have something to worry about.
And then basically it was time to wander down to acute oncology for the infusion. Hubby stayed out in the waiting room, sitting himself into a nice comfy lazyboy chair while young child and I were escorted into a room on our own. Usually, I am in a room with lots of other people but they were super busy today. I had a lovely young nirse, who I have had before. We both recognised each other, and so we joked around and had a few laughs.
Young child was taking pics of me and instagramming them...no, thats not it...what is it dammit...oh yep, snapchattimg. Got a message back from younger niece (16) in Australia - cute.
Waiting, waiting, waiting...
Flushing line before starting zometa...
I asked about the aches I get in my back, how my feet throb but forgot to mention that my hands can also get quite sore. I had always put it down to the exemestane tablets I am on, but she said it is probably a combination of everything including the zometa infusion. But its copable, so thats ok. A lesion had been picked up on my lung at last CT scan which they were pretty sure it had nothing to do with the cancer and they still maintain that. They will check it when I am due to go for next lots of scans but at last acan, it was very miniscule. If it has grown in that time, it could potentially be cancer. They don't seem too fussed, so I'm not either.
I have had a slightly sore right neck gland and sometimes I can feel it when I swallow, so I queried that today as well. I had gone to my GP when I first felt it but that's as far as it went. Because it has been on and off over a period of a few months now, I thought I should question it with the cancer doc's. The oncologist (a different lady today) said she could feel something, but when I turned my head either way, she couldn't so she says it isn't a swollen gland but there is so something there. Nothing has shown up on scans but she has made a note of it and they will keep an eye on it. While I don't feel the need to panic about either of these things, a part of you does wonder, "shit has it spread" but I just don't see the point in worrying until I have something to worry about.
And then basically it was time to wander down to acute oncology for the infusion. Hubby stayed out in the waiting room, sitting himself into a nice comfy lazyboy chair while young child and I were escorted into a room on our own. Usually, I am in a room with lots of other people but they were super busy today. I had a lovely young nirse, who I have had before. We both recognised each other, and so we joked around and had a few laughs.
Young child was taking pics of me and instagramming them...no, thats not it...what is it dammit...oh yep, snapchattimg. Got a message back from younger niece (16) in Australia - cute.
Waiting, waiting, waiting...
 |
| Feeding me to keep me happy while hooked up... |
Young child and I amusing ourselves while being 'infused'
So thats another infusion over for another 28 days. Next one is 16th November. Hopefully no side effects - I didn't last time, so should be all good.
Wednesday 19th October 2016 - 8.08pm
Sunday, 16 October 2016
I am just me
We were a hop, skip and a jump from the casino so were able to go and have a flutter both Friday night and again Saturday afternoon. I was crap at it, so have decided that will not be my new hobby - too damn expensive for a start off! But it was fun to give it a try. We had a pedicure, and if you know me, then you know how much I hate feet, regardless of whether they are mine or anyone else's. I refuse to touch anyone's feet and I don't like mine to be touched. So for me to have a pedicure / foot massage, then you know my feet must be bloody well aching something chronic...and you know what? I LOVED IT!!!! And I am going to have one on a reasonably regular basis. My feet throb terribly at times, from the meds so this can be a little treat for me. Never ever thought I would hear myself say that...so now back home again to reality. Back to work tomorrow for another week of work, but with a few appointments. Have to take hubby to the eye clinic tomorrow for a check up. Hope they stop soon. Its tough enough taking time off work for my appointments let alone his as well but the one appointment his brother took him to, I was wondering the whole time what was happening and it was driving me crazy not being there!!!
And then Wednesday is my next oncologist appointment and infusion. Not expecting too much as I haven't had any scans lately so it will be more a case of how am I doing etc. (I'll probably update after it).
After talking at the breakfast last weekend, I had so much positive feedback. I have had people say to me that I am an inspiration and my sister calls me her hero. And with being away this weekend, my mate and I had a good chat and she was commenting on the grace and strength I have shown after being diagnosed. She says I don't see what they all see, and she's right - I don't. I always say "I am just me". I'm not a dramatic sort of person (I don't think), I take it all in my stride and what the hell is the point of panicking about shit, it doesn't change anything and that just sucks up all your energy and these days I need all the energy I can muster. Of course there are days when I feel really pissed at the world and feel sorry for myself but you've read it already, so you know - but I do feel a bit pathetic
and self pitying and I really dislike it when I feel like that. So many out there who are a lot worse off. "Reality check Tania" look at the positives - life is too short to dwell on the negative - remind me from time to time...
Sunday 16th October 2016 - 9.33pm
Sunday, 9 October 2016
My chance to speak out
This morning my work held a pink and blue ribbon breakfast. Blue ribbon for prostrate cancer which is the biggest killer of men in NZ. I was invited to be a guest speaker and I happily accepted. The idea was to wing it, and then on Friday afternoon, I decided to write out what I was going to say, and then when the time came, I was so confused about what to do, I decided to wing it and use my writings to prompt me.
I didn't look at my paper once. As soon as I was introduced, I had a huge lump in my throat already and I hadn't even opened my mouth yet!!! Its still amazes me that when I utter the words "I have breast cancer", how emotional I get. Everything I wanted to say left me and I didn't say half of what I wanted but I guess the most important thing of all, is how people need to be educated on symptoms etc and I was really getting into the swing of that!
Hopefully I can upload the video that my baby took on her phone. The first part is missing and she has had to cut it into two short versions so fingers crossed I can upload them to here for you to see. Its a bit hard to hear in some parts but please just bear with it. I think when it begins I am explaining that I had cancer in both sides...
It is super strange to hear yourself speak - is that how I really sound? But I am so glad I did it...I am so fired up about people learning about this goddam disease and if it has to be detected, early detection is the key...
Sunday 9th October 1016 - 12.44pm
When I try to play the video's, it say an error has occurred. I'm tecnologically challenged so I'm not quite sure how to fix it. I'll see what others have to say, and may have to end up deleting them.
Tuesday 11th October 2016
I have ended up deleting the videos as the two options open to me to get them uploaded each held a drawback as far as I was concerned (thank you Kirsty for your help and advice). All I know is that being given the chance to speak to others about what I have been through was a wonderful experience even though I choked up (I hate it when I cry!). Being told my cancer has spread has frightened me more than I can ever really verbalise, even if I have been told I could live for years (but thats part of the unknown isn't it) and my story could have been completely diffferent if I had gone to the doctors when I discovered that lump. If I can make a difference in someone else's life so that they don't make the same mistake would be absolutely amazing.
6.01pm - 11/10/16
I didn't look at my paper once. As soon as I was introduced, I had a huge lump in my throat already and I hadn't even opened my mouth yet!!! Its still amazes me that when I utter the words "I have breast cancer", how emotional I get. Everything I wanted to say left me and I didn't say half of what I wanted but I guess the most important thing of all, is how people need to be educated on symptoms etc and I was really getting into the swing of that!
Hopefully I can upload the video that my baby took on her phone. The first part is missing and she has had to cut it into two short versions so fingers crossed I can upload them to here for you to see. Its a bit hard to hear in some parts but please just bear with it. I think when it begins I am explaining that I had cancer in both sides...
It is super strange to hear yourself speak - is that how I really sound? But I am so glad I did it...I am so fired up about people learning about this goddam disease and if it has to be detected, early detection is the key...
Sunday 9th October 1016 - 12.44pm
When I try to play the video's, it say an error has occurred. I'm tecnologically challenged so I'm not quite sure how to fix it. I'll see what others have to say, and may have to end up deleting them.
Tuesday 11th October 2016
I have ended up deleting the videos as the two options open to me to get them uploaded each held a drawback as far as I was concerned (thank you Kirsty for your help and advice). All I know is that being given the chance to speak to others about what I have been through was a wonderful experience even though I choked up (I hate it when I cry!). Being told my cancer has spread has frightened me more than I can ever really verbalise, even if I have been told I could live for years (but thats part of the unknown isn't it) and my story could have been completely diffferent if I had gone to the doctors when I discovered that lump. If I can make a difference in someone else's life so that they don't make the same mistake would be absolutely amazing.
6.01pm - 11/10/16
Subscribe to:
Posts (Atom)