Almost worth it

Well, my despair and pissed offness last night was almost worth it I have to say! Because tonight I got a call from my very dear friend from school, who lives in Australia who rang to find out once she finished cracking up laughing at my wee rant last night - who had pissed the old bitch off this time!!!!!!

What a tonic...lots of laughs, catch ups and being able to talk shit through. Thanks for listening to my fears and concerns and for helping me make sense of it. Its not a nice feeling when you begin to doubt your self worth but we all see things differently and this also goes for people. We could all be standing in a room full of others and everyone have a different take on each other.

Kath and I were mates at high school for our first year there and then drifted the following year after  being separated by the choice of subjects we took and then the paths our lives took. We have only just recently reconnected within the last 4 or 5 years and for me, it has felt like we were never apart and have been close mates all our lives. We just fit...and did immediately. I don't often say that or feel that. I have to be extremely comfortable with someone to be my true self. I think I have a habit of holding back or putting some kind of wall up...I don't know, I don't really know how to put it.  But there aren't too many people I can honestly say, I am completely comfortable with to be able to be myself with, but Kath is definitely one of them.  

So Kath - my beautiful friend...this is for you. I love you dearly and I value the friendship we share. We may not see each other very often at all or talk much, but you lady, are always in my heart - thank you xx

While I'm here (sorry Kath, your moment is over and onto the next topic!) I had my infusion today. Nothing out of the ordinary. Vein found, lure inserted and infusion completed and injection given. Back for another in 28 days. Its weird sitting in this room with other people who are also having infusions done, and you realise you all belong to the same club. The 'cancer' club...not one you want to join believe me, but yet so many of us in it. Theres a mixture of men and woman having infusions, all ages, different ethnic backgrounds, some have had chemo, some haven't. Even the infusions are varied...and the times they go for. I am lucky - mine is a short one. Seven minute flush, 15 minute infusion and another seven minute flush. The longest part is probably trying to find a vein. From the moment I left work to go and when I returned afterwards, it was just shy of two hours. Time I can easily make up.

Thats me for the night, I am completely buggered. I had such a crap sleep last night, my eyes were hanging out at work all day today, blasted computer problems didn't help and laughing til I was almost crying tonight...what a complete mixture of emotions within a 24 hour period!


Wednesday 26th July 2017 - 10.51pm

PS: two posts in one day...one first thing and second, almost at the end of the night

Sleep evades me

Because:

I AM FUCKING PISSED OFF!!!!!!!!

Perhaps I will fucking sleep now...I just had to fucking get it out of my fucking system...

Somehow I don't fucking well think so

Wednesday 26th July 2017 - 12.04am

Noises in the dark

Its 3.22am, and I have been evicted from my bed. My extremely drunk husband came home, and has forgotten which side of the bed is his and practically pushed me out! So in disgust, I have traipsed down to the lounge, pulled the mattress out behind the couch (always kept there in case I ever feel like lying down in here) and made myself a bed down here, only now I can't bloody well go to sleep.

Its quite strange lying here in the dark. Sounds are quite loud. The kitchen clock for one - and yet in the daytime even without the radio or TV on, it doesn't appear to be this bad. The cat scratching...or moving about. Even the sound of nothing behind the sound of the clock ticking is deafening. I don't know that makes sense but when I really stop and block out the clock, its almost like the silence is 'thick' and then you hear the wind as it suddenly sweeps across. And then a car goes up the road, where are people going at this time? Is that a plane I can hear quietly in the background? Or is my imagination playing tricks on me and I am beginning to imagine sounds? Is this what it's like to be blind? You lose one sense and your others become heightened. There is definitely a deafening sound of silence broken by the tick tick tick of the clock and the occasional car going passed. God, will I get to sleep? I love my bed...it has become my comfort zone - my go to place when I am tired or need to lie down when I can't sit up any longer.

Hope I don't wake up to a dead rat or bird lying beside me. It wouldn't be the first time they have been left in either the hall or the lounge, to be discovered the next morning - ugh! Have I just talked myself out of going to sleep? Maybe I will tiptoe up to the room and see if that twit (said in a loving way - grrr) has manouvered back over to his own side of the bed.

Yay, eyes are getting tired but unfortunately my tummy is starting to feel empty...could be a quick snack before trying to crash out...

Sunday 23rd July 2017 - 3.45am

Wintery blast

Its almost 8.00am on a Saturday morning and it is a pretty awful wintery day...grey, dismal, raining, windy and I am so glad that I am tucked up inside, still in bed. I have put the heat pump on to try and heat the house up before I venture up and out. I have an appointment at 10.00am down the road to get a haircut and in all honesty, I could quite easily keep my ass stuck in this bed. But I know on Monday morning when I am getting ready for work, I would deeply regret that decision! But for now, I revel in being toasty warm in bed.

My emotioms feel a bit like an Auckland day...it can be four seasons in one day here and thats how I feel with my emotions. Perhaps not quite in a day...or maybe...hubby and kids could probably answer that more precisely.

It has been a really good week. I am thoroughly enjoying work, not that I don't usually. But sometimes it is a struggle to get there (once I am there, I am fine). But for now, I have a renewed sense of being there. I feel like I haven't been on my game the last few months or so, but now I feel completely different - I have a renewed confidence in my ability. I haven't been so tired as I stopped taking the higher dose of codeine. This has affected my ability to get through work greatly. They were making me so tired, to the point where I was fighting to keep my eyes open, and driving home was scary with the same issue. I would be in bed about 7.00 / 7.30pm, falling asleep not too far from that time. For now, the paracodeine which has a much lower dose of codeine in it, is keeping my aches at bay so am ensuring I take them four hourly. My aches seem to be a bit like my emotioms - up and down. And for now, the aches aren't too bad and its wonderful to have a reprieve from them for a while.

For me now, going to bed early is my way of managing my tiredness, so that I am able to function the next day. After sitting up all day in an office chair, when I get home, all I want to do is lie down. So I wander off to bed and read or play games on the ipad until such time as I am unable to keep my eyes open any longer. I was pleasantly surprised as I was able to go out to the movies with the girls from work the other night. Admittedly it was a 6.00pm session but it was lovely to be out of the house and socialising and the movie finished at 8.30pm so I was still home quite early. And then ended up sitting on my bed with my girls talking and laughing until 11.00pm...it was just lovely. God, I love those girls! They are the light of my life xx

I went to the movies again last night (to see the same movie again because I loved it so much!) with my younger daughter and her boyfriend. It was a 9.00pm session and I was feeling pretty damn good, but admittedly towards the end of the movie, I was flagging...but I made it! We saw War from the Planet of the Apes. I so enjoyed it...talk about four seasons in one day - in this movie, I laughed and I cried and then I laughed some more and then I cried again...jeepers creepers - I was exhausted by the end of it!

So what does this weekend bring? Peace and quiet...lots of downtime and probably a big  power bill! But thats ok. I think of all those people whose houses are flooding in this storm, or those who don't even have homes who are sleeping rough out there...how lucky am I. I need to be reminded of that every so often.

So nice to be back in a good place...even if it is in shitty weather:)

Saturday 22nd July - 8.26am

Wedding anniversary

Today is our nineth wedding anniversary. In some ways it seems just like yesterday but a lot has happened in that time as well. There was a time or two where we almost didn't make it. When hubby chucked his job in four years ago, I was so filled with anger especially when he didn't seem too motivated looking for another job. But as the years have gone by and after me being diagnosed metastatic, and now recently with him being diagnosed with emphysema, a complete calm has come over me and I have finally come to terms with how it is. I am the income earner, he does the housework as well as the outside stuff and does most of the cooking and for us, it works. Each of us brings something to the table...no matter how small or insignificant it may seem to yourself. But to others, it can make all the difference.

But he is my rock. He isn't a person with a lot to say unless he is pissy eyed or with his mates but he always seems to know what to say to me when I am having a moment and I know how much he loves me. He never hides it and is very comfortable with telling me.

We had an amazing wedding...I loved every moment of it from when we woke up that morning to when we finally crashed out at some ungodly hour the next morning. The fun we had peeling taro, spuds and kumara and wrapping them up to put in the umu...making raw fish, squeezing a ton of lemons with my newly manicured false nails. I still wonder how on earth I didn't lose them in the raw fish! Having the marquee put up, setting it up, family coming around to help, the whole thing was just frigging awesome! I wanted to do it all over again cos I just loved it all so much!

Hubby and I have never really taken any time for ourselves. For me, it has always been about the girls, or us as a family - making wonderful childhood memories for the girls and spending as much time as possible together. And for that I am so glad because now they are at an age where they are off out doing stuff with mates, and so they should be. They are young adults and life is too short.

But it was lovely for hubby and I to go out for dinner on our own tonight. It was really important to me, to mark this special day together. I thought maybe we can just get takeaways, but this pressing thought kept coming into my mind, that we needed to go out and celebrate. It was just lovely...

Maybe that is the lift I have needed...but one thing is for sure. With being metastatic, I have realised that birthdays and anniversaries, Christmasses or any dates that have important meaning, need to be celebrated, or at the very least, recognised. Once the moment is over, it becomes a memory and as time goes by, becomes a precious memory.

Wednesday 12th July 2017 - 9.57pm

Update on todays oncology appt - 10/7/17

I went for my oncology appointment this morning. CT scan has shown up clear - cancer continues to respond to treatment - YAY!  The downside is that he has no idea what is causing the issues with my tummy and said this could be very hard to determine. He poked, pushed and prodded my tummy, and my back - asked lots and lots of questioms. My head was almost spinning. Where does it hurt? What kind of pain is it? Does it cramp? Does it come around from the back? How long do they last? What do I take for the pains? I just wanted to bloody well scream "I don't fucking know" but know he was just trying to get as much information as possible in order to try and get some answers. I even deliberately didn't take any pain killers in the hope my stomach would be sore when I was in my appointment. Of course not...that would be too easy...anyhow I now wait to have a colonoscopy done at some stage. That will rule something else out hopefully, and maybe the pains will just subside in their own time.

Not feeling so flash over the last few days as you will realise. When I got to work, I just wanted to cry but as time went by I felt a bit better. Still felt a bit blue but 'ok'. Just got on with my work. My workmates don't realise it, but they are what help me to get through a day. The fact that we talk and laugh, and the conversation doesn't revolve around cancer. Apart from my family here at home, these are the ones I spend most of my time with, and the interaction I have with them is so important - they help to keep me sane.

My mood is very heavy at the moment and I don't really feel very sociable right now. I am back up in my little safe haven, or prison depending on how I feel at the time. I HATE this cancer shit right now and in all honesty, I just want to bury my head in the sand. I want to be me again, not that I think I even liked me that much, but I know I definitely don't like this person much right now. I made a comment at my appointment this morning about being over this cancer crap, and the oncologist asked if I wanted some counselling sessions...its too hard right now, I don't have the energy and I don't want to be out of work any more than I have to be. This mood will pass and I will become more positive and happier within myself. But for now, I just hate how unfair this is, and how much it scares me.

I'm so sorry for the negativity lately...but this is my way of releasing those feelings.

Monday 10th July 2017 - 6.36pm

PS: Wednesday is our nineth wedding anniversary. Think I might see if hubby would like to go out for dinner that night. I loved our wedding and the build up of the last few days prepping for it...it was so much fun with lots of family around to help. Beautiful memories xx

Look how tiny my beautiful babies were...xx

Feeling melancoly

I don't know what is wrong with me this weekend...in a shitty mood last night and now tonight I have this real feeling of melancoly settling over me. I have tried going to sleep but every time I close my eyes, I keep getting flash backs of when I was first told my biopsies had come back positive for breast cancer, and I remember bursting into tears. God, if only I had realised then, that it was just the beginning of a much bigger picture. It makes me want to sob my heart out, I can feel the tears just sitting there waiting...it seems like a lifetime ago. So much has happened, the bilateral mastectomies,  all the hospital visits, the infections, losing my implant, being diagnosed metastatic and the rest is history.

I hate this...I hate what has happened to my life and how this ugly disease has affected my life. I feel like a shadow of my old self sometimes, other times I feel like I am exactly the same person with a few modificatioms. Who am I? What have I become? I dispise what I have become...I feel like I may as well just die now. What sort of life do I have? Everything hurts, my hands, my feet, my back, my stomach, my hip. I am tired and useless. I have no energy, I don't want to go anywhere. I am only useful to go to work and pay the bills. I exist...I don't have a life where I actually do anything.

I hear my younger daughter talking and laughing with her young man and I hear my older daughter talking with her mate while I feel lonely. I sit here alone with my thoughts.  Hubby sits down in the lounge watching TV. I don't even have what it takes to sit in the lounge and watch bloody TV for christ sake! I am in bed by 7.30pm because I have the urge to lie down, I just don't want to sit up any longer.

I keep thinking that everyone is supposedly sad, scared, worried about me eventually dying from cancer. But in reality, they will be sad for a while but their lives will go on. They will continue to go out with mates and eat and drink and have moments of fun in between moments of feeling sad until those moments become shorter and longer times between them. But, where will I be? I will be dead...a pile of ashes sitting in a plastic container sitting on a dusty shelf. My life will be gone, over and done with, no more. So when you think about how sad you feel at the thought of me dying, take  a moment and think how scared I am at the thought of my life being snuffed out, at the thought of not being here anymore and not being a part of my daughters lives or my husbands.

Thats why I feel melancoly tonight...the reality hitting home a little harder while I sit in my room alone.

You must wonder why I constantly talk of dying especially when I have been told I could live for years.  It is a fear deep within you of dying with no promises or guarantees that I will live for 'years'. What do they mean by years? I've already been metastatic for 17 months...does that that mean I am a year down? With goodness knows how many left? When I go to see the oncologist tomorrow, will he tell me the dreaded cancer has spread and thats why my stomach is playing up so damn much? I don't really think so but this is the uncertainty I live with now...its called 'my life'

I have had a sob to myself while I type this, actually I had to strop briefly while I had a good cry trying to do so quietly so as not to disturb anyone but you know sometimes they can get a bit out of control and end up as big racking sobs...how stupid I feel

I feel so alone...How I wish someone would slip in beside me, put their arms around me while I sob my heart out.

I'm so tired of being the strong one all the time...even we need a shoulder now and again. Unfortunately one of my downfalls is, I'm not good at asking.

In the meantime, the tears keep coming...

Sunday 9th July 2017 - 11.14pm

In a fucking mood

I am in one of my fucking moods but am trying so hard to put a lid on it...

I think that people forget that I have a termimal illness. That stupid word 'termnal' always sounds so bloody dramatic, but actually, that is exactly what it is. I have an illness that will kill me one day and that by taking the medication I take daily, and every 28 days is helping to keep me alive and well. But because I look so well, people forget that I actually have a serious illness. I have this 'serious' illness, yet I work 40 hours a week - eight long hours each day, five days a week, waking up at 5.30am and leaving home at 7.00am, while others are still fast asleep in their beds, with not a care in the world. Yet I get to worry about paying all the bills as well as feed everyone. I pay for the roof over our heads, the water that goes down the drain every time the tap is turned on, the internet used constantly, the power used to heat rooms, play electronic devices, the food we eat or waste, the new carpet which everyone trods all over without a care...yep - thats me...and its my name on the mortgage papers until the day I die. But this appears to mean nothing...for some reason, when I put a point across, I am the mean, grumpy, bitchy one. People can treat my home with a lack of respect, sit on their arses while this woman with a terminal illness works to pay the bills, then cooks dinner (sometimes) and usually does the dishes because it doesn't occur to anyone else they need to be done...and yet I am tired...my tummy hurts constantly these days...I currently have the runs...I am worried about the impending results on Monday...and I need to try and rest up so I can get through another eight hours of work the next day.

Do people really understand what I am going through? And that actually you know what - when I think about it, I am pretty fucking amazing...when the chips are down, I don't fucking crumble like I would like to sometimes. I stand up and take the shit that is dealt to me because if I don't who the fuck else is going to? When David died, I managed the best that I could and brought my girls up to the best of my ability and with  absolutely unconditional love...and when people judged me and I lost friendships over my relationship with my now husband, I grieved for those friendships and continued on with my life. When my husband chucked his job in, I worked out a budget that we could live on, cutting out frivalous things and just 'took it'on the chin and dealt with it. What other option did I have? I didn't have anyone who could give me buckets of money to help get things paid...I did it all myself...me...alone...no one else...And then with being diagnosed with this bullshit disease, I have tried to deal with it as best as I can and as positively as possible...so people, please cut me some slack...just think about my life and what I have had to fucking well deal with.


Saturday 8th July 2017 - 10.02pm

Almost in panic mode

in this mornings post, I received a blood test form from Oncology.. I immediately went into a blind panic, my heart plummeted into my stomach and I could feel the blood rushing in my head. My immediate thought was 'fuck, they've found something in my CT scan and need a blood test to check something out!!!!' And on the bottom of the form it has an area for 'clinical details / reason for testing' and they have written 'on chemo'. Helloooooo, I'm not on chemo and nor have I been - does that mean they are looking at me starting it???? And then thank goodness, reasoning crept in and I remembered the post in NZ is only three times a week, and I only had my scan late Thursday afternoon. The datestamp on the envelope is the 28th June, so it definitely has nothing to do with my scan - phew...My heart beat starts to slow down and creeps back to where it should be sitting, and I don't feel quite so lightheaded from all the bloodrush to my face.

But this is EXACTLY what I mean when I talk about how the fear is constant. I honestly saw my life flash before my eyes and thought, god this is it, my time on this earth is even more limited now. And I think of Sandra, before she passed away of breast cancer, she was having awful issues with her tummy. I try not to compare what is happening to me, to what she went through, but when you have been there and seen what she went through, its hard not to think 'will that be me?'

I still wonder why that form has been sent...does it have something to do with my blood tests I had before my infusion on Wed because that was the 28th. I have to have bloodtests a couple of days before each infusion and they check the results before they go ahead and hook me up. And why am I panicking because a form was mailed out to me? Its because I always use the same form, 'a repeat request' and use it for 12 months and then a new one will be given in August...so to have one sent out, its something new.

Now that I have calmed down, no longer irrational I will bide my time and wait it out. I will go for my bloodtest on Monday (the lab is just up the road from work) and wait it out until my appointment.

"panic over"

Saturday 1st July 2017 - 2.21pm