Long time no see or hear

 Goodness, its been a long time since last posting. I’ve thought about it a number of times but in all honesty just haven’t felt up to it.

Posting tonight and feeling like I do, comes with feelings of guilt. Guilt because I should be grateful for being here and being as well as I am. Life is full of tragedy and its those tragedies which affect people around me, makes me think I should be more grateful but I guess you can’t compare your life to others. We all have our crap that we have to deal with in one way or another.

Not too much has gone on that I can remember. Life has been ticking along pretty much as usual until recently when we discovered some of my cancer spots have had some progression in them. This has caused the oncologist to change my treatment and I am having trouble getting used to it. Instead of taking the exemestane, I am now on a tablet called Ibrance daily, still have my three monthly zoladex but now have at the moment a fortnightly injection in each butt cheek called Faslodex. It will change shortly to monthly thank goodness.These drugs come with some baggage unfortunately. Weariness where I can hardly keep my eyes open (except last two nights) and  I am feeling in a lot more pain in my lower back and hip area. The oxy’s aren’t even really touching it, so sometimes I am doubling up but I try not to. Not until I go back on Monday to see the oncologist and ask. It will have only been a month since I have seen them, but they want to check and see how I am responding to the new meds.

Just to slightly confuse things a bit, I was diagnosed last week as diabetic and while it doesn’t bother me greatly, I am unsure if some of the side effects I am experiencing are from the new cancer drugs or the metformin for the diabetes. Its been coming for a while and to be perfectly honest I have needed something to get me back on the right eating track again. Pretty drastic way of going about it though.

Crazy to think Christmas is just a week away and that we finally get to escort the year 2020 out without a backwards glance. Covid has taught us a valuable lesson, to not take our freedom and health for granted. I hooe 2021 is a much better one for us all.

Today marks a day of sadness for my sister and her close friends. One of their gang passed away from the dreaded cancer and so his funeral was today. I feel for my sister who is stuck in Melbourne, unable to come and say her goodbyes as well as offer her love and sympathies to the family. Something like this always enforces the vast space between us. The quietness of the evening is quite eerie and all I can think of is this family and wondering how they are after laying their loved one to rest. It brings back unwanted memories, always at times like this.

I can’t believe it, I have finished a post. Hopefully I am back on track again. I wish you all a very Merry Christmas and a safe and Happy New Year.

Friday 18th December 2020 - 9.12pm

Birthday wishes my love - May 2020

Today is what would have been David’s 57th birthday. Hubby and I were talking about it this morning and I decided not to put a post up on facebook. Sometimes it just feels too personal to constantly share it with everyone. But this afternoon, the now youngest of the brothers put a happy birthday status up of him with a photo. Every time I went on facebook that status was always the first thing I would see and that photo...I can’t really describe the feelings it has brought out. The photo is almost like he could step out of it and the tee shirt he is wearing, he absolutely loved. I feel my heart is broken all over again and to be honest, the tears aren’t too far away.  He has been visiting me a lot over lock down, and even before to be honest. Only the other night I dreamt of David and I remember so clearly going up to him and putting my arms around his waist, and I could feel him put his arms around me. It was so real...and when I woke up to find it wasn’t real, I felt such an ache. It has nothing to do with my feelings about my husband, it doesn’t mean that I love him any less...I simply miss David and so many memories are flooding back along with very vivid images of him in my mind. It makes me angry all over again that the girls and I have been ripped off. Not just us of course, but his mum, and his brothers especially. And so many others that were touched by him. While there were times where he was an arsehole, he was majorly a wonderfully, kind person and I loved him so, so much. We had such a volatile relationship at times but it started after his dad passed away. David was riddled with guilt, of which I won’t go into details, but I know. He loved kids, all kids and was so happy when we had our girls. He just simply adored them. I used to clean Countdown at night time and I would come home and our youngest baby would have gotten up after I left home and would be curled up in her daddys arms on the couch on my return. Little monkey...they both loved it! He used to take the girls out for a drive in the weekends and be gone for hours, having said he was just going down the road! Never asking if I might like to go for a drive too...I wonder where our lives would be now if he hadn’t died. And I wonder if I will get to be with him when I die. How I would love to see him again and to hear his irresistably hilarious laugh.

My poor David, taken far too soon. He will have been gone for 19 years this June. 19 years! How can that be possible!

Thank you for the photo lil brother-in-law...I have taken it from your facebook post. 

David will always be my first true love. My heart still breaks for him, and I miss him terribly. Some times are worse than others. 

Rest in peace my love. I hope you are keeping an eye on us all and please keep your girls safe. Give them signs that you are watching over them because I know they miss you dreadfully, no matter how young they were when you died. God life is so damn unfair.

Love you my Davey wavey...xx

Friday 15th May 2020 - 6.55pm

follow up dental appointment

I had my follow up appointment at Greenlane this afternoon after having x-rays etc taken of my jaw etc last Thursday. It was confirmed that the cause is from the zoladronic acid (zometa) infusions I have been regularly having to strengthen my bones. The condition is called ‘osteanecrosis’ of the jaw. The phosphate has worn the gum away to expose three separate parts of bone in my jaw. It will never be cured, but it can be hopefully managed with good oral health i.e. brushing teeth regularly, getting teeth cleaned regularly at the dentist (bi monthly preferrably) and using mouth wash a few times per day to kill off any bacteria which could be lurking. To be honest, I am bloody guttered. Only a small percentage get this condition and secondly, it is quite un-usual to get it in two separate parts of the mouth. But of course, I am the lucky one who gets all of it! And its a fear I have always had since starting the treatment. I guess because when I was younger, I never looked after my teeth properly and as I have gotten older, I have been paying for it. Both financially and pain wise. Its definitely feeling much better than last week, I was in such excruciating painbut now it only gives me a wee reminder from time to time, at about a 2/10 opposed to a 20/10 last week. Antibiotics for another two weeks as gums are still slightly swollen and another follow up in a couple of weeks time. Hopefully it all subsides soon. Pity the mouthwash doesn’t taste like bubblegum!

And so lock down continues as does the boredom. Sad state of affairs when you look forward to going to the doctors to have your hormone shot one day and the dentist the next...

I don’t know if I said this in my last post, but I am quite worried about returning to work once we’re given the green light. The rest of my department are all working from home and I’m the only one who isn’t working. I will be going from lazing around for so many weeks and getting up at any time of the day (after going to sleep any time of the night or following morning) to having to get up earlier, be at work by a certain time and then have to sit up for hours in an office chair (not to mention actually doing work). While I know I have the absolute and total support of my bosses at work, I still can’t help but worry at how it will take it out of me.  It doesn’t seem to matter how many days I drop down to or how short I make my work days, it is just never enough. Is it time to pull the plug on working? In some ways I think yes and in others, I think no. One thing the lockdown has taught me, is that it would be too much for me to stay home all the time. I guess its much like when someone retires, time needs to be filled up in some other way. But my other fear is money, or the lack of it. I’ve always worked and had my own money, apart from when I had the girls. Actually even then, I did work. I used to look after hubbys cousins two kids during the week days, and clean a Countdown supermarket 5 nights a week late in the evenings like from 9.30pm to 1.00am. It has to happen at some time...

Wonder if Monday will bring stage two of the lockdown. Will be good to have the choice of going out somewhere even if you don’t use it. Choice makes such a difference.

Friday 8th May 2020 - 1.23am

Covid 19 catch up - May 2020

Its some ungodly hour of the morning and it seems that the rest of the household is fast asleep apart from myself, even the cats are quiet and not prowling looking for a bed or a pin cushion to knead into (often myself!). Since the occurance of the lockdown due to covid 19, my sleep patterns have become completely up the wazoo! I stay awake all night and as soon as a bit of daylight hits the house, my eyes start to close and I sleep on and off during the day. Its a pain in the preverbial and I’ll have to try and get some normality back before I go back to work - whenever that may be.

Right from the word go, or even a few days beforehand, it was decided that most people would take computers home and work from home. I wasn’t given that option as there wasn’t really anything for me to do. Most of the admin work is done by my work buddy who has been trained up to take over from me and so I have been lucky enough to be able to just relax and chill out at home. I have felt such a relief off of my shoulders, for the most part its been quite enjoyable, mixed in with periods of boredom but also knowing many others are in the same boat.

I’ve been having issues with my gums since before lockdown and had been referred to Greenlane Hosp by my dentist. I finally went on Thursday morning and it appears the issue is caused by my cancer treatment. I had right from the get go, been advised that the zoladronic acid which is used for my infusions could possibly erode the bone of my jaw down and guess what has started happening...dammit! I’m on antibotics at the moment as there is also an infection in my gum, the pain is up and down although is certainly getting better. I go back Thursday 7th May for another check up and to see what the specialist is planning. The decision will then need to be decided on whether or not I continue with the infusion. They had recently gone to three monthly instead of every 28 days. So watch this space.

All in all, apart from the dental issue, I am feeling pretty good. Not too much pain, although I’m not sitting up in an office chair for hours at a time and the thought of returning to work does worry me a bit. But after being on lockdown for five or so weeks, I can also see that I need it, to be able to get out of the house regularly. But to be honest, I forget about the cancer which has been great!

I don’t know about you, but boy have I been having some weird dreams. They started before a bit before lockdown, I remember telling a work friend about dreams of David I was having. They are still ocurring and at times are so vivid. I’ve even woken up feeling quite heart broken. Wonder whats causing these to happen...

Sunday 3rd May 2020 - 4.06am

March 2020 catch up

Goodness, its been ages since I last posted anything! First post for 2020 but yet it seems ridiculous to say happy new year since we are three and a half months into the year.

As I catch up now, we are dealing with the COVID19 / coronavirus and I’d be lying if I said I’m not freaked out by it. My worry is for my husband who has emphysema and apparently this virus likes to strike the lungs. I’m not so scared for myself getting it but I worry about how this is going to affect us all as a country. I remember as a kid watching a program called “Survivor” where there had been an epidemic which had killed off the majority of the world and this woman Abby was looking for her son. Are we going to end up like that? Are our supermarkets and hospitals going to end up devoid of things like food, water, medicines etc? Its damn damn scary. I have never scrubbed my hands so vigorously and find myself singing “happy birthday” (usually twice) either in my head or under my breath as I wash my hands. Early hours of the morning isn’t so great so the tempo speeds up slightly! But I’ll try to keep cool calm and collected, do what is needed and take each day as it comes.

Its been a fairly busy year. My babys 21st, family wedding and my latest oncology appointment which I found quite interesting.

The oncologist has said they will keep a closer eye on me, with having another CT scan between now and my next oncology appointment in June. They have apparently decided that at the first sight of any progression, they will put me straight onto Ibrance which is the drug that was recently fought for and is funded from 1st April. Women have been paying up to $6000.00 a month for it, so to get it funded would be amazing. Of course the hope is that there is no progression for years yet!

My baby turned 21 at the beginning of the month and she surprisingly decided she wanted to have a party. But just a small gathering with those closest to her. Fair enough! Her celebration. It was a really lovely chilled out evening. I probably didn’t get to bed until 3am and our last ones didn’t leave until close to 6am. Birthday girl had crashed out hours before... the next day as well as Monday, I could hardly walk! I was exhausted, so ended up being in bed all of Sunday recovering. My poor husband cleaned everything up all on his own (or mostly). He plodded along at his own space - what a blimmin star.  So I learnt that my days of putting a social function on and sitting up all night are pretty much over. My back gets so sore, and it doesn’t take much at all.

And then this weekend, hubbys brother got married and it was beautiful! Apart from getting dressed for it, there was no prep for me required. All I had to do was turn up. But interestingly enough, after about four hours, I was exhausted, my back was aching and my feet were killing me. I was starting to get the shakes, which was mainly due to only having breakfast in the morning and nothing since. There were lots of speeches and items which was great to watch but I had to eventually race outside to get some fresh air as it was so hot. Hubby and some of the family were out there too. But I ended up having to go home quite soon after that. I didn’t even get to have a feed or get round to talk and catch up with whanau. Just very quick catch ups at the church before and directly after the ceremony. As soon as I got home, I lay on the bed and crashed out to sleep.

These two social events have been really interesting for me. The big ‘c’ continues to affect my life but this has been quite tough. Even interaction with others can take it out of me.

Because I didn’t have a chance to catch up with all the family, we have decided to have a few of them over for a bar-b at the end of the month which just happens to coincide with my birthday. I have asked everyone to bring a plate as I am unable to do it all myself these days which is something I have learnt just lately. But it was damn hard asking for help. Whenever we usually have people over, we do all the food. I've always been like that, but...’reality check’. Anyhow, I am looking forward to seeing everyone

Today has been a tough day. The cancer / meds is really giving my body a beating. I woke up early in a lot of back pain but couldn’t take my meds too early otherwise it screws up the rest of the day. I guess I could have but I only have a limited amount of tablets, they are so like gold. I didn’t want to go to work but I am sick of being away from work. But I ended up in tears in my bosses office, just tired and in lots of pain so I ended up coming home and crashing out. I’ve been quite sore all afternoon but actually now, this evening I am starting to feel quite human again. Such a relief. Damn pain is so debilitating - I keep saying it over and over but its so true.

But all in all, life is plodding along quite well. I am loving working three days. I don’t do a lot or go too far but thats okay. I had such a shitty crappy depressing year last year that I wanted to look at this year with fresh eyes and I even feel a lot better. Sore as I am and fed up with this flipping disease, I am trying to keep my spirits up.

I’ll leave it there for now. Keep well everyone and lets hope this corona virus dies out as soon as it started.

Tuesday 17th March 2020 - 8.00pm

Boxing Day - 2019

All that crazy madness we call Christmas, is over for another year! Its Boxing Day and we are all just chilling out, sleeping the day away.

Our. Christmas day started right at the stroke of midnight as the day snuck in amongst the stars and darkness. My girls and I were running around yelling “Merry Christmas!” and hugging each other. We were all awake except my younger daughters man, but with my foghorn of a voice yelling in his room, the poor guy shot straight up out of bed thinking it was time to leave for the beach! It was hilarious!!!! I don’t think he thought so...and so so we decided to open our pressies there and then, instead of having to wait til the end of the day, after returning from the beach. It was fun! Lots of noise, and oohs and aahs and laughter. And so we decided after pressies,  to have a couple of shots before all heading back off to bed. Yummo! It was peach liquer, blue curo something a-rather (a blue liquer) mixed with raspberry syrup. OMG! It was just the best...I wasn’t happy with just one, I decided I’d quite like a second one and man, was I feeling rather warm afterwards! What a brilliant way to start the day. So then we all toddled off to our beds and promptly fell asleep, except for me. I tossed and turned, tossed and turned and ended up not having any sleep whatsoever...and a bit worried about driving to the beach but I was fine. Wide awake in fact. Hubby got picked up at 5.30am by his brother as they were spending Christmas with their mum and putting an umu down. Big girl and I loaded the chilly bins up and then the car and we were up the beach by 11.00am. The others didn’t arrive until about 1.00pm & 2pm because apparently the traffic was absolute bedlam. When we left, it was great! So it was a quiet chilled out day. It was a bit chilly at times. My big girl & her aunty went for a swim. While I wanted to, I like to be roasting hot when I hut the water.

I am so grateful my sister-in law & nieces & nephew were with us.  It was lovely to have the company and they were an absolute blessing to have. They helped me to tidy our food away back into chilly bins and pack the car up again. I was in significant pain by that time (bout 6pm). I’d spent a lot of time lying on the ground, luckily I took my pillow and when I wasn’t lying down, I was either sitting in my camping chair or at the barbeque table. My sister in law offered to drive me home, as her kids had driven her up in one of their cars. I jumped at the offer! While I felt okay, I felt much safer knowing someone else was going to drive. I can’t really express how grateful I am for their help. It really has magnified yet something else. I think maybe my beach days might be over, or maybe shorter trips instead of the whole day. I can always go so long as someone else is driving, my big girl has already put her hand up which is lovely. But I get so uncomfortable and I have spent most of today, recovering. I have been so sore, hardly able to move when I first woke to take my first lot of pain meds. I’ve slept most of the day, today so I guess finally catching up on lost sleep from the previous night.  Even now, I can feel my eyes drooping and I’ve taken my last lot of pain meds. They’ve been knocking me around quite a lot lately.

But the one thing I like about the day after Christmas, is the left overs! No cooking, yet dinner and pudding  ready at your finger tips. I made an ambrosia on Christmas Eve to have at home on our return after the beach. Too hard to take pudding up and trying to keep them cold and not covering everything else in cream...I was exhausted by the time we got home and had a bit to eat. Ate nothing but rubbish at the beach. Simply too lazy to get something proper to ear so simply filled upon bloody rubbish.

This post is really to express my thanks to my sister in law (and all the others) as their caring and help made things so much easier. I am honestly so limited in what I can handle nowadays. I know a certain someone was worried about me, because she said so a number of times. I think it was eye opening for her to see me all day and to see first hand how much I have changed and the limitstions placed upon me now. Even going for a walk along the beach, on the rocks looking for crabs & sea life, she kept telling me to careful in case I slipped over. Can you imagine having to haul my heavy ass back to where we were camped up for the day...Poor Shell!

And so there we go! Yet another Christmas done and dusted. Now counting the days to seeing the new year in. Gosh, I hope its a good one for us all. The start of another decade...2020. I remember watching space movies when I was a kid and the futuristic dates were always around the 21st century and now we are coming into the second decade of it!

It will be 19 years since Davids passing. He’s been on my mind a lot lately. Remembering before the kids, how much I loved him and how lovey dovey we used to be, and I’d tell him how happy I was and he always sounded so surprised by it. We certainly weren’t the perfect couple by any means but we had our good times along with the bad, like everyone. He’s on my mind so much, I can almost feel his arms around me at times. Nothing at all against hubby - simply memories flooding back along with feelings of sadness and what might have been...

Boxing Day 2019 - 10.19pm

Quick catch up before Christmas

Can you believe that Christmas is just a couple of sleeps away?  Where does the time go! I’m glad to say I am looking forward to Christmas Day, finally. I haven’t really had a christmassy bone in my body, but I have got my present shopping done and wrapped and then my big girl and I went food shopping on Saturday for our picnic lunch / dinner and I am so excited at the thought of going to the beach for the day and getting some swims in! So long since I’ve been and it feels great to have that feeling of excitement and anticipation!

I recently had one of my sisters come to stay for a week, from Melbourne. It was great to spend time with her but it felt different.  I think because I am conscious of how different I am now and how often I felt sore or tired, and had to lie down on the bed, or go for a sleep. I probably went out and did more in that week than I have for a long time, but would often pay the price for it the next day. Sometimes I had to talk myself into doing things but always enjoyed it once I was up and about. But I feel like our lives are so different now, I can’t really put my finger on it. I think it probably has to do with the distance apart we live, we don’t talk much, and when we do, we’re catching up on everyone. When I feel down, I don’t pick up the phone to talk directly to her. It saddens me...we are drifting in different directions. But that is inevitable. My sister has good health and can do fun things with her husband, family and friends. I feel like shit most of the time and don’t feel like doing anything and my friends all go out and do fun stuff with other friends. I don’t feel like a fun person anymore. My gawd, I think thats it! I don’t feel fun anymore. I am angry and resentful because of this stupid disease. Its kinda hard to be full of fun when you are bloody sore and half asleep most of the time...but, it was lovely to see my sister and to have that time with her.

I’m glad to say my recent oncology appointment and CT scan went well. No new movement on the cancer front, therefore my existing treatment continues to handle things nicely, or as nicely as it can. I was a bit nervous just before I got my results. Its been four years without any further spreading and I know one day the news will come where it has changed, however slightly it may be. And so this time I figured this could possibly be the time. Thank goodness I was worrying for nothing. The oncologist said they hope to get five years run out of exemestane before it starts to falter from its job and patients need to be changed to a new medication. So I have a year up my sleeve still, as January marks four years since being diagnosed metastatic (terminal).

I have read so many things about how oxy meds are very addictive and I could never understand how, or what form it takes. But I think I am beginning to find out for myself. (Oxycodene and oxynorm along with paracetamol are my regular pain meds). I rely heavily on the oxy’s. I usually take my first dose at 6.00am and then every four hours from there, with a maximum of four doses. But honestly, it isn’t enough. Sometimes I am taking the doses in 3.5 hours instead of waiting for four hours as the pain is starting to break through. And now my usual wake up time is about 4.00am-ish and along with this comes nausea and then the pain in my back kicks in. I don’t want to take my first dose of pain meds too early as it may stuff things up for the other end of the day, maybe I should try it. But even getting out of bed to sit up on the side of the bed to take the meds can be so difficult. And of course the side effect of these drugs is tiredness. It is so hard for me to wake up properly and keep my eyes open, to start the day. But the on-going pain is so, indescribeable. I hate it! I hate having this goddam disease! I am so fed up with myself and this bullshit life. It really is unfair. I try so hard to be grateful but honestly this is no picnic. I often want to take extra doses of oxy because when I take them, they usually kick in about 20 minutes later. I don’t want to wake up at 4/4.30am and wait until 6am to take pain killers. Sometimes throughout the day I feel the pain creeping back in and after a couple of hours I want to take more but know I need to wait a bit longer. I worry that those thoughts of taking more than I am prescribed will become stronger and my dependance on them become even tighter. And the fact that they are a controlled drug, it is such a rigmarole getting a damn script. They only prescribe so many per month. At least when I was on codeine, I was getting scripts for three months, now its every month that I am hassling either the oncologist or my GP.

I’ve previously mentioned that sometimes I wonder if I am using the cancer as an excuse. Do I talk myself into the way I feel? I happened to mention this to my mate who came to my oncology appointment with me last week and she told me off. She said that don’t I dare minimise what I am going through, that what I feel is very real and of course I know it is. The pain and the tiredness are definitely not a figment of my imagination. But I was so grateful for her reaction. When I have said this to other people, more times than not they agree with me. Occasionally someone will say I am talking rubbish, but mostly people half pie agree with me. I don’t know if its because they don’t want to appear to be disagreeing with me or is it that my friend understands a lot more due to her previous nursing experience and the fact that she has had cancer and while currently has been given the all clear (long may it stay that way!) still feels some of the effects such as the tiredness / fatigue. Fatigue is a much better word to use. It expresses much more than the word “tiredness”. Fatigue is a “thing”. A very real thing. I’ve been so tired and sore of late, you can’t help but get upset about it. But perhaps the key is that I should try to push myself a wee bit more, if theres enough in the tank I mean. My unmotivatedness is very real and I know sometimes I do have to push myself to do things. And once I do them, I feel much better for it. I guess it is a case of see how you are each day and what you can handle and don’t pressure yourself to do more than I can.

But at least I have something to look forward to with going to the beach for the day very soon - can’t wait!!!!! So blimmin excited!!!!!!

Hope you all have a safe and Merry Christmas, and enjoy the day with loved ones

Sunday 22nd December 2019 - 11.33pm

Officially summer!

The start of another summer is upon us, having started today. I’ve always been a summer person, right from a kid - loving the beach, going swimming whether it be at the pools or the ocean, frying myself with baby oil. Sunburn on top of sunburn! Crazy! I haven’t made the most of summer the last few years and I desperately want to change that this year. I am itching to go for a swim. Seeing videos on facebook of kids swimming, is tortuous. My girls and I are planning on going to the beach for Christmas Day again this year like we did two years ago. Hubby will go down to his mums to spend with her and his brothers. I did wonder whether I should go too but honestly my days of feeling obliged to do anything is pretty much over. I do things for myself now. While I can still drive, I will get myself there. Not too much goes on down at mother in laws. As she is not feeling well these days she stays inside watching TV and good on her I reckon. She also needs to do what is right for her. And the guys sit outside getting plastered, not really my idea of Christmas or fun. Hard to believe it‘s only a few weeks away! Where has this year gone? To be honest, it has felt quite a slow year but as you look back at time gone by, you have to wonder where did it go!

I have my next oncology appointment on Monday 16th December, followed by treatment. Its a mid morning appointment so am taking the whole day off work. With my late starts and early finishes, its not worth me going in before and after. Those days are gone too! I have a CT scan on Tuesday 10th December, perfect timing. Then I will get the results at my oncology appointment the following week. I try not to worry too much, pointless panicking until there is something to panic about. I mean you can’t help but wonder has the cancer moved? has it stayed put for another wee while? The day will one day arrive when I get the news that the cancer has shifted, and hopefully it will be a minute shift. Its when it transitions from my bones to my organs which worries me. I remember when I was told at one of my early on appointments that when it goes to your organs, it is a whole different story from it being in your bones and suddenly the outlook isn’t quite so rosy. Even as I think about it while I am typing this, I can feel the blood rush to my face and my heart starts to beat quicker and a wee lump forms in my throat. Its scary, it really is. And that is why I try not to think about it while it is un-necessary to. So fingers, eyes, arms and legs all crossed for another good outcome.

My sister arrives from Australia Tuesday night. It’ll be early Wednesday morning before she arrives here. I can’t wait to see her!!!! Every time I think about it, I want to squeal out loud like a kid, I can’t wait! She’s here for a week, I told her to make sure she goes out to see her mates as I am so boring and don’t do much these days.

I am taking the days off work, and so including the weekends and days I don’t work, I will have a break of 13 days off. That’ll be interesting. I wonder if I’ll be ripping my hair out with restlessness or will it be the other way, and I’ll be filled with dread at the thought of going back!

Its funny at work now. I am like a little minion. For years I was in charge of admin, people always coming to me when they needed something and I was in charge of the whole chicken caboodle. Now I’m not. People constantly by-pass me and go to my work buddy. I do the little jobs and leave the rest to her. It is bloody great! Such a relief off my shoulders and the timing was perfect! There is no way I could handle all that stuff now. I’m not sure if I said in a previous post, but I had said to the GM that I think he should just lay me off but he refuses to. Which is lovely of course but I do still get the guilts when I have to leave early or am away sick. Daft eh! Got a terminal disease and still I feel guilty. My lovely work partner is always nicely telling me off for it! She’s too blimmin cute and I am so grateful for her. Thank you my lovely, you know who you are xx

And so another weekend is over and a very quiet one its been too. I used my Sweet Louise vouchers and went for an oncology massage. I came out feeling on top of the world. As usual she found a few tight knots and was able to massage them out, so I’ve been a bit tender in a couple of spots but otherwise, its great. So anyhow, two more days at work before my big break away. I don’t really need to take too many leave days now since starting to drop my days at work. But its always handy, you never know when you may need them.

Sunday 1st December 2019 - 10.28pm

A healing weekend

Since my weekend started after finishing work on Wednesday afternoon and getting home, it was the start of catching up with three family members whom I haven’t seen for quite a while for one reason or another. Its actually been wonderful and so heart warming. The first one was when I got home from work Wednesday afternoon and it was hubbys eldest son who lives in Sydney with his family (kids now reached adulthood) sitting out in our back patio area. Its been a few years, perhaps five since we last saw him and we are both bloody hopeless at keeping in touch with each other. So that was such a lovely, lovely surprise. Then on Thursday, we saw him again but he brought his younger brother with him. Its been perhaps 18 months to two years since we last saw him. Long story and one I don’t really want to delve into. A few of you will already know it, but lets just say the last time he came round (after a few years absence) he got a right telling off from his wicked step mother. I have to say it was lovely to see him too and I hope it is a new beginning for all of us. I had said my piece to him those couple of years ago, I have got it off my chest and so now its time to move on. It took guts for him to come up, so I’m very happy. And then thirdly, today I saw my cousin (my cousins son) whom hubby and I had had a huge fight with last Christmas time and it had caused a massive rift. It was great to clear the air with him too.

I am so good at getting angry with people and holding a grudge these days. But at the end of the day, these three men are all family and life is too short to spend it mad, unless people really deserve it, (and believe me, there are a couple!)  If I can clear the air with people who aren’t family, then surely it is more important to do so with actual family members. Some relationships are just too important, especially when you have been very close to them in the past. It has truly felt like such a heart warming, cleansing few days. I feel like it has lifted a wee bit of a burden off of my shoulders.

When it came to making up with hubbys younger son, I am really glad he came up. Even if he needed a bit more courage with his older brothers presence. The bond of parent and child is such an important one and I am sure my being so angry with my step son was a bit of a strain for my husband although he understood the reasoning. But at the end of the day, this young man is still hubbys blood and so I really hope this relationship continues and that he believes I am very happy to have him back in our lives.

Its been a few days since guy fawkes and blasted crackers are still going off. One of our many neighbours is having a good go at letting the damn things off and as I type this out, I can hear in the background, what sounds like huge shells going off. Then the realisation hits me, of course! It has to be the local community fireworks event this evening. I remember those days when my girls were younger. Actually, we only ever went to one fireworks show but it was fantastic! But every year, we used to light firecrackers in our back yard, usually with friends or family over to share the fun. But I swear every year it either rained or drizzled and poor hubby would get wet lighting the damn things. I cannot believe it.   This year, the bloody weather was frigging perfect!!!!!!! Oh well, great for all the  little kiddies this year.

Nothing new with me. My back has been relatively sorer than normal. I must dig out my Sweet Louise vouchers and go for an oncology massage. Still waiting on an appointment for a CT scan before my December oncology appointment. This has been my third weekend with having Thursday off work. It was great just having to go to work Monday, Tuesday and Wednesday. Still think I would prefer to have Monday off instead but its payroll day and so I am needed that day. Its the least I can do, they go out of their way to help me, so I can do this one thing. Four day weekend is a four day weekend either way!

Eek, I’m sitting up doing this post and my back is starting to ache terribly. Thats a sign for me to lie down straight. I’d pop the electric blanket on to get some heat on it but cripes, it is so warm, even with the gusty winds. Another option is to jump in the shower and run the hot tap on my back for a wee while. This can work wonders sometimes. Might just go do it...

Saturday 9th November 2019 - 10.04pm

Changing work hours

I have decided to drop down to working three days per week - Monday, Tuesday and Wednesday. Too many times, by Thursday I am exhausted and drag myself off to work and really struggle to stay all day, or I don’t make it there at all.Today is my first Thursday at home and I don’t mind saying it feels very strange. I have spent most of the morning feeling like I should be at work. But it was great at work yesterday, knowing that it was actually “my Friday” and I had the next day to rest. The double bonus is that there is a public holiday on Monday, Labour day. I did think for five minutes about going up north to my cousins place for the long weekend, but then reality hit me. Its one thing to drive an hour to Waiuku and quite another to drive 3.5 hours to Helena Bay. Plus its looking at being the usual Labour weekend weather. Its usually always crappy weather and this week has proved no different. The winds have been howling quite strongly this week, making me even quite nervous at the thought of having to drive to work one of the mornings this week.

So yep, I am now doing a new three day working week. It feels very strange to be at this stage of my working life. I have always worked, except when I had the girls although that was a completely different kind of work. To think I have gone from fulltime to part time due to health reasons is quite an unreal feeling. Our GM caught up with me on Monday, asking how I was. He was saying he had noticed that I am taking a lot more time off these days and that he see’s me limping around. We actually had a really good talk and I was quite grateful that he was concerned enough to say something to me. I was very frank with him. I told him that sometimes I wish he would simply lay me off from work, so that I had no choice but to deal with the dreaded Work & Income but he said no, he has no intention of doing that and that he has me covered. How bloody awesome is that! I guess my years of being a good employee and keeping my nose clean has paid off. I am so grateful although as usual, that dreaded guilt still kicks in, although I think it may be lessening ‘slightly’. I really hope with working just the three days, I’ll find it so much easier to deal with.

Life is plodding along as normal, nothing new, nothing bad. I’m waiting for a CT scan appointment. The oncologist wants one done before I go back to see them in December, so we can discuss the results. Hopefully there won’t be anything to discuss and my medication will continue to keep the cancer from spreading any further. I know one day will come the dreaded news that it has moved but hopefullythat won’t be for a while yet. But its always hanging over your head. On one hand, the longer I survive and without the cancer having spread any further, I don’t feel quite so paranoid. But on the other hand, the more that time goes by, I also feel my luck will end one day and the dreaded news will finally be exposed. My thoughts these days are more about how much having cancer has changed me. How it affects me on a daily basis. Not so much how much time I have, although with my fourth anniversary approaching in January, I do wonder how many more I could have left. But most of the time as I am dragging myself around, I can’t believe the difference between who I was even two years ago, to who I am nowadays. Still, I am alive and still have my silly sense of humour and keep making those terrible ‘mum jokes’.

Thursday 24th October 2019 - 3.34pm

Uniting with family

I arrived back home yesterday after spending a long weekend (Friday through to Monday) with my brother and sister in law who live in Waiuku. I hadn’t seen them since my big girl was a baby, although my sister in law and I often chat over ‘messenger’. But there is nothing like being in the presence of people instead of over social media, although it certainly has its uses. I cannot rave about this weekend enough! I cried when I saw my brother, simply due to the emotion of seeing him after so long. He still has that quirky, cheeky grin which I just love. And my sister in law, she is just as I remembered her, has a quiet, placid aura around her with a lovely sense of humour. We talked like we had never been apart. The wonderful thing too was that I got to be reunited with my two nephews who were little boys when I last saw them and who now are family men in their forties! Both lovely young men whom I felt connected to immediately. I’m not too good with keeping regular contact with people, so that is something I need to work on. I am very keen for my girls to meet their cousins as well as their aunty and uncle. A visit before Christmas is definitely called for! I even found the drive good as gold. When I have thought of it previously, regardless of whom I would be visiting out that way, I have felt the drive is too far. Am I deliberately putting obstacles up in the way, or is it a case of giving myself time to adjust to doing something out of the norm. I’ve talked in previous posts about my lack of motivation and how I hope it is just a case of the winter blues and as we head into spring, and sunny days, I will feel more up to doing more. For instance, today I had ear marked going out for shopping for a particular item, but presently I don’t want to. I am happy lounging about. At least I know I have done it (the drive I mean), and it wasn’t as bad as I had perceived and its definitely do-able. That is a huge plus in my book!

And along with that, I have come home raving about this beautiful family and my heart feels full to bursting. Something I haven’t really felt in a long time.  My household has missed me, or some of them anyhow. The blimmin cats have been pretty much glued to me since I arrived home and of course both slept with me, ensuring they were touching me. Funny creatures!

I have today off work and go back tomorrow. It’ll be a super short week for me which is definitely do-able. Can’t believe how quickly time is getting by, its already he middle of yet another month. My sister flies over from Melbourne in the first week of December, for a week. It’ll be here before we know it, followed very quickly by Christmas and with a new year making its presence felt. With the new year comes my fourth anniversary of being ‘terminal’. Its such a dramatic word isn’t it. Yet people don’t understand what stage 4 is or what metastatic is. When I tell people I have stage 4 breast cancer, they will ask things like “so you’re in remission then? You’re cured now? I mean of course that is understandable. Unless you are in the medical profession or are dealing with something like this within your own personal life, you aren’t going to understand. So hence, to get my point across, I use the word ‘terminal’ but I always feel a bit of a drama queen...

Tuesday 15th October 2019 - 12.50pm

Good feels today

I am chilling out at home, after work. Older daughter is cooking dinner, younger daughter has just gone to work and hubby is outside giving the vacuums a good clean out (yep multiple machines). Its lovely...I feel great! I actually feel quite chirpy and alive although my tummy is feeling slightly ravenous. Is there even such a thing as ‘slightly ravenous’???? But you know what I mean.

I had a really quiet weekend, although I went to see my GP on Friday. I needed to talk to him about me self medicating myself and upping my dosage of happy pills, plus a friend had told me that I could well be entitled to having some home help and that I had to apply through my doctor. So my doctor and I did the paperwork on Friday and he sent it off on my behalf. I was told it could be the new year before someone touches base with me, but helloooooooooooooo, I got a phone call this afternoon. Bad news unfortunately. Perhaps that is why I heard so quickly. The long and the short of it is that I’m not eligible because a) I don’t have a community services card (so because I still work, I get penalised) and b) I have abled bodied people at home with me. The lady asked “Could I afford to pay for a cleaner even for an hour myself?” I may think about it, although I resent having to fork out money when like the lady says, I have people at home who can do it, but perhaps it is worth it to save my sanity. I won’t do anything about it just yet, I’ll see how things go. But I appreciate the quick phone call, bad news or not, but at least I’m not hanging on with some hope.

Since my last post, and then putting it up on my facebook page for others to read, I received so many beautiful messages. I think my girls must have read it as well as they seem to have pulled their socks up a bit, I mean I still had to clean the bathroom yesterday, but they have been doing dishes, putting vacuum over, emptying dishwasher, and cooking dinner tonight. Its a start, so lets see how it goes. I am very grateful for those things to be done and even cleaning the shower yesterday didn’t seem too much of a mission. It makes a difference when your not doing everything.

The other thing which has happened since my last post, is that my sister-in-law reached out to me to invite me to go and stay with her and my brother in Waiuku for the coming weekend. I haven’t seen them for many, many years although my sister in law and I chat on messenger from time to time, especially since I was diagnosed with cancer. There is quite a big age difference between us so perhaps that is partially why we haven’t been closer or involved with each others lives. I remember going out to visit them with mum and dad when I was a kid, spending the whole day with them and their young family.  I am going to drive myself, so hope the weather will be clear. I am looking so forward to it, quite excited actually. The thought of catching up and getting to know them again is wonderful not to mention being away from my own place for a whole weekend. Apparently my brother is looking forward to it and is ready to dig out old photos - I think that is just gorgeous 💜- can’t wait! I really look forward to building up a new relationship with them. I have probably heard more from them and had more offers of help than from others I would have expected to have heard from, but haven’t. I am grateful and filled with hope.

I have been feeling so good today and this evening. I remember my GP said I probably wouldn’t feel the full effects of my upping my anti depressants for a full month. Where I could instantly feel some relief, I am wondering if I am beginning to really reap the benefits now. I honestly cannot believe how good I feel, almost like my old self.  I don’t feel remotely tired, although I had a marvellous sleep last night. Makes such a difference...

“Heres to feeling great!”

Monday 7th October 2019 - 6.55pm

             

I’m still here...

It feels like ages since last posting, I can’t even remember when was the last time. There have been numerous times when I have thought about it, whether to share the good, the bad or the ugly but it has simply felt too hard to do so. Tonight, I decided it was time to break the drought.

Its been a real mix of ups and downs but the one thing which remains consistant is my lack of motivation. I’m still trying to find ways of getting passed it and summer will be here in a matter of months and so with that, brings hope.

I have often banged on about feeling forgotten but within a period of a couple of weeks, I have had contact from a few people with whom I haven’t seen or spoken to for ages. These people have made me realise thats not true. We are all busy in our lives and we get caught up on day to day living and before we know it, months or years have gone by and you think “cripes, I’m going to go see that person” or whatever the circumstances may be. And we should follow those thoughts through as it is so worth it to the recipient. For me, I’ve had 4 really ‘wow’ moments with catching up and just recently so the afterglow of their visits and phone calls are still making me feel warm and fuzzy.

I had an oncology appointment last Monday, along with my treatment. My infusions are now 12 weekly andare timed with my visits to the oncologist. I still have to have my hormone injection every 28 days and I can’t believe that I forgot to take the damn injection with me to the hospital last week. I told the oncologist I would go to my GP to have it done (thats what I do for the in between treatment appts now), but in all honesty I just couldn’t be bothered and so to date, I still haven’t had it done. I kind of figure I’ll just wait until my next one is due, I simply can’t be bothered and I think to myself surely missing one hormone injection is not going to make that much of a difference...I hope! This is where my lack of motivation comes in, even something as important as part of my treatment.

I recently had one really awesome weekend, where my dear friend picked me up and took me for a drive to Helensville for lunch and then we wandered around the shops. It was great! Then lo and behold, my lovely cousin picked me up the next day to go for brunch and we ended up zgoing to Wellsford and same thing, wandered around the shops after our meal. What a great weekend, I loved it! If there is ever a time when you think that you would like to do something for me, picking me up to go for a drive is one, or cooking us dinner one night is another, although I appreciate cooking dinner for a family is a bit of an ask, but it could be something like a pot of chop suey, a casserole, something nice and simple. I used to be such a proud person but nowadays, I don’t! I struggle with cooking dinner every night and no one else in the house bothers, regularly anyhow. If I had to choose between having a housekeeper to do the housework, or a cook to do dinner each night, the cook would win hands down! I was going to look into one of those companies that send you fully cooked meals and all you need to do is heat it up. If I did that once a week, and then with another night where we just fend for ourselves, that would make a bit of a difference. But like anything, it all comes down to cost...

I’ve recently had a couple of instances where I have forgotten to take my pain killers, like missed doses completely and so the aches have crept up on me. I have now discovered just how wonderful my oxy meds are! You can definitely tell the difference from when I am in pain and once the meds have kicked in, usually taking about 20 mins to take effect. The pain isn’t a full on pain but more of a subtle dull nagging feeling. Its so unpleasant and such a relief when finally under control. The oncologist is going to send me for another CT scan before my next appointment which will be in December. Hopefully no changes. He was saying that I am doing incredibly well on the exemestane. I’ve been on it coming up four years in January 2020 and the usual time someone is on it, is 12- 18 months, like wow!!!!!! That is something!

Next month is the dreaded pink month, breast cancer awareness month. All the radio ads, pink ribbons, pink fundraisers and so on - ugh! But next month also marks four years since I was diagnosed with breast cancer, November will be four years since my bilateral mastectomy and then January 29th, 2020 - will be four years since being diagnosed terminal. Four years, wow. People will say “aren’t you doing well”, “gosh your so lucky to have lasted that long”. I actually find that quite insulting. Isn’t it stink that I should be grateful because I have lived four years with this shitty disease. Do any of you ‘normal’ people feel grateful that you’ve survived the last four years and hope to get another four? I bet the answer is no...you don’t even think about time or how long you will live to, but yet those of us with terminal diseases should be grateful for surviving a few measly years.

I can honestly say a lot of the time, I hate my life. I hate how cancer has affected me. The constant aches, having to make sure I take regular drugs to ensure the pain doesn’t break through, the complete lack of motivation, the struggle to get up and get ready to go to work, then survive the actual day once I get there. My boring, boring life while for others, you get to go out and do fun things. I went to the mall the other day to get a couple of things from a couple of different shops. I was bloody exhausted by the time I got back to the car. I was sweating like a pig, my back was killing me. I had to come home and crash out for a sleep. Trying to motivate myself to cook dinner can be a huge one. I am usually better doing dinner after I get home from work. I guess because I have already been up and doing stuff. Housework is a joke. No one else at home bothers with it, so invarably I end up doing it. Our bathroom gets cleaned every two to three weeks (ugh, gross) but it takes so much out of my back doing it, especially cleaning the shower. The vacuum goodness knows when...Tell your family to help you, you say. I don’t know how many times I have asked for their help and they are well aware I have terminal cancer, but it doesn’t really seem to mean anything. I eventually get to a point where I cannot stand it any longer and I end up doing it, but then I have to psyche myself up. The same goes for dinner. If I don’t cook, we don’t eat. If its takeaways night, for some reason, its always my shout. And yet I often don’t work a full week and hubbys work is slowly down and I pay ALL the bills.

I hate my life yet I try not to, because I don’t particularly like the alternative either but this cancer ride is no fun. It certainly has a grip on me, I wouldn’t wish this on my worst enemy. No I don’t want counselling, however I have self medicated. I upped my happy pills from 1.5 a day to two a day. Haven’t checked it by the GP but will let them know when I next go. I can feel the effects. While it hasn’t helped my lack of motivation, it has helped with my temper and dark thoughts.

I find sometimes I stop myself updating this blog because my dark moods worry me and that you can’t bear to keep reading it. If that is the case, don’t read it. This blog is for me...to help me lessen the burden on my shoulders. If you don’t like what your reading, then don’t. I have no choice with having this damn wretched terminal cancer. I am stuck with it and so the things I go through is my life and I regularly struggle with it. Remember, you have a choice, I don’t.

Monday 30th September 2019 - 9.35pm

Feel like a human 🙂

First day back at work today, after being off sick all last week. Actually felt human - what a change! I felt so damn awful last week, so it felt so wonderful being back at work and feeling on top of the world again.

Heres hoping for a great week!

If I was still having my treatments every 28 days, today would’ve been the day. I was still supposed to traipse into the city to go to the hospital to have my hormone injection which I still need every 28 days. I was fighting it last night, and this morning, just could not summon up the enthusiasm to go all the way in, so ended up making an appointment at my GP’s to have it done there instead. It was so much easier! The oncologist probably won’t be too thrilled as he still wanted me to go there so all my records in one place but I figure the important thing is having the injection on time. Regardless of where abouts I go to have it done.

Last week I finally perked up about Thursday where I was able to not gag and carry on but Friday is my normal day off and so with the weekend, I still didn’t feel too much like getting out and about. But honestly, by Saturday I was ready to rip my hair out with frustration. I was fed up with being stuck at home, but neither did I really have the oomph to go anywhere, not to mention not having anywhere to go...I was so fed up, I broke down in tears - mainly because everyone else in the house had somewhere to go. Once I released that torrent of emotion, I felt so much better. I hate crying but I hate doing it in front of someone, so at least I was able to do it privately.  And I was able to go out on Sunday and catch up with a good friend who lives out of Auckland, along with another friend. Was just what the doctor ordered, definitely saved my sanity.

So I look forward to having a positive week, I feel really good and that can only be a good start.

Monday 29th July 2019 - 7.35pm

Feel like I am becoming my mum

I am home sick today, second day in a row. Carrying on from a three day weekend of feeling absolutely crap and constantly nauseous.  I was popping my nausea meds like lollies to no avail. I finally dragged myself off to the doctors yesterday to try and find out what it was. I had to get taken into the nurses room to lie down on the bed because I wasn’t coping too well out in the waiting room. She took my temperature and blood pressure which were both high. That surprised me...I don’t know why really. I didn’t really expect it to be anything I guess. Turns out it is probably just a virus but because I hadn’t been able to eat or drink anything I had exasperated it and dehydrated myself. Silly moo...but I’m on the road to recovery very slowly. I’m not quite so continually sicky feeling but neither has it gone, plus I still have a high temperature.

I think of my mum in her latter years of life where she was very ill and basically bedridden. I remember her getting frustrated because she would never sleep the whole night through and many times I remember seeing her propped up in bed or sitting on the side of the bed absolutely sick of herself or making little mewing noises because she felt so bloody goddam awful. This is me now...not just the last few nights but when I have bad pain during the night and I am frustrated with myself and the ongoing aches I have to endure. Poor mum, I often think of her and see her clear as day during these times, with a complete understanding or should I say a better understanding of what she had to go through. Getting through the night on your own without waking anyone else. I want to turn the light on but I don’t because I don’t want to wake hubby up.  The boredom, the loneliness and all you want to do is bloody well go back to sleep. Its hard to put into words the exact feeling but the thought of waking in the early hours of the morning fill me with dread. Even my arms get jumpy, just lying still - I feel like I need to ferociously rub them to get some life back into them, and then my imagination starts to run riot and I think am I having a stroke, or am I dying...is something else going on in my body - crazy! So hope as I get a bit better each day, I can sleep longer into the morning to my usual wake time. And after such a brilliant week last week too!

I’d been to work all four days, for the whole day and felt so damn good with it. I was feeling so positive. But never mind, this is simply a slight push back - next week is another one where I can start afresh.

Wonder when I’ll get back to work? Tomorrow? Thursday? Who knows, but I do know I won’t be pushing myself too early - its just not worth it. I even feel too crappy to feel guilty about being off work...that says something doesn’t it.

Tuesday 23rd July 2019 - 1.45pm

General catch up - July 2019

Its been a wee while since last posting anything.  No reason other than laziness.  There have been multiple times when I have felt like having a catch up - for no particular reason other than to share happy / contented moments or sad / concerned moments.  Nothing too ground shattering, just moments in time which will never be gotten back and sometimes as they are happening, you feel like you're going to remember that moment forever.  But in reality and especially my reality, I am so forgetful.  So as one moment passes and another occurs - I have already forgotten the minutes gone by.  I don't even know if that makes sense.

I went for my latest CT scan the other week and am happy to say it has come out all clear.  The cancer continues to stay put (yippee) and Reuben (oncologist) said I have a rather healthy looking brain.  Awesome to hear!  He seems to think the nausea I suffer is from the oxycodene I take (30mg each evening and only the mornings when I don't go to work) as it is morphine based and makes you drowsy.  So he has tweaked my script for those, and it is probably starting to make a difference now.  Not feeling nausea quite so often as I used to. It's really just a matter of finding ways that suit you to handle different situations.  The last few weeks I have struggled terribly with making it to work, or once I get to work, actually staying there for the full six hours I am supposed to be there. The feelings of guilt were kicking in once again big time.  Last week I was ready to hand in my resignation.  Almost had myself completely convinced and was ready to talk to my supervisor about how I was feeling, until I walked in the door at work the next day and actually felt like a blimmin million bucks! And not in the least bit like chucking my job in any time soon.  Or even remotely discussing it.  That was Thursday, I don't work Fridays, so I spent my three day weekend looking for stories to watch or listen to, of inspiration.  To try reminding myself just how lucky I am, compared to so many others.  Time to stop this constant feeling sorry for myself / hating my life / dwelling on the effects from the cancer and meds etc. The fact of the matter is that I have stage four breast cancer - time to embrace my life instead of fighting it.

For the last two days, I have felt absolutely brilliant - getting through the working day quite easily, although it entails having a bit of a snooze in the evening for a couple of hours, getting back up for another couple of hours and then back to bed for the rest of the night.  I found a woman on youtube who I felt was talking directly to me.  I'd been searching a wee while for someone - I knew what I was after but wasn't quite sure how to go about finding it specifically.  She kind of fell into my lap, and was so great, I can't bloody well remember her name!

Friday gone (12th July) it was our 11th wedding anniversary. I can still remember how much fun it all was, the prep the night before and the whole of our wedding day. It was simply, the best day ever. I loved every moment of it. Well most of it anyhow, apart from a bit of a glitch but just not worth going into an explanation. But anyhow, I bet last year if I posted around about our anniversary, I will have said much the same thing, remembering the fun we had prepping etc. It honestly was magical. But anyhow, we didn’t celebrate our anniversary in any way although hubby got our big girl to go out during the day and buy some long stemmed red roses - 11 of them! Plus a large box of roses choccies. How gorgeous is that! Funny ol’ bugger. He’s not the least bit romantic, but he has his moments. The fact that he wanted 11 roses, one for every year, I thought was just adorable!

And then today, four days later, it is his birthday. The big 58, although he looks nothing like it. Another two years and he’ll be celebrating his 60th! He’s gone off to darts tonight, so will have had a few drinks with the boys, which is good. Beats sitting here at home watching TV by himself while I sit up in the bedroom watching stuff on the ipad. After dropping her uncle off at the club, our baby girl did a run to Burger King for dinner. I am so sick of cooking...I thoroughly enjoyed my burger - yum yum yum!

So while there has probably been other stuff going on, I have no recollection of it. I hope I can get through tomorrow and Thursday with as much life and enthusiasm as I’ve had the last two days. Feels great. Might go suss this woman out before I go sleepy byes and have a wee listen to her. It really makes such a difference from when I am feeling tired, sore and my whole body feels heavy, to feeling how I used to for the first couple of years after diagnosis. Still no putting pressure on myself, take each day as it comes.

On that note, have a great rest of the week. Take care and please feel free to leave a comment or ask questions if you have any.

Oops, one more thing to note. The oncologist has decided to stretch my bone strengthening infusions out to every 12 weeks instead of every 28 days. The zoladronic acid can play havoc with your gums and jaw bones and since I have been on this stuff for three years solid now, he feels it is time to break it up. I thought yippee!!! No more having to leave the office to traipse up to the hospital until he then went on to say, he still wants me to go there for my injection, which I still need to take every 28 days. My injection which takes all of a minute to take...no I cannot go to our local hospital, or to my GP - both which are a hop, skip and a jump away from home, but have to continue going into town for a 1 minute injection, because he wants all the notes together in one file. Probably in another six months time, these will go to three monthly along with the infusion. I can’t wait!

So thats my postscript for the night. All the best xx

Tuesday 16th July 2019 - 10.45pm

Still catching up

Goodness, Monday night I was talking about how I had been relaxing all day so I would be like a box of budgies for work the next day. I had meant live budgies, but instead when I got to work thats defnitely not how I felt! I’ve seen lots of perky happy budgies, all chatting away to each other, yep definitely not me! I was feeling heavy and just generally yuk, and just felt I couldn’t cope with work, so finally at 10.30am-ish I gave in trying and came home, where I crashed out to sleep. I find that really interesting and wonder why I felt like that. On Monday I had fallen asleep about 3pm, waking up at 5pm so then it was after midnight before I could go back to sleep for the night. Thats one thought of why I felt so crap. The second is that yesterday I touched on how my eating habits had changed slightly. For a long time, I was doing the keto thing, high fat, low carb and loved it. Then we went away to Melbourne for a week or so in July last year where I didn’t bother trying to keep up with it and ever since then found it ridiculously hard to get back into it, just generally being bad, bad, bad!!!! But my boss had recently talked to me about some reading up on veganism he had done and how since the introduction of eating animals, dairy foods and eggs has made people overweight and ill. Apparently eating plant based food only is supposed to be good for you, give you more energy etc and so we came to an agreement that we would give it a try for a month. We were about 2 or 3 weeks into it before I went to Sydney and I was feeling great! There were times when I was so tempted to go back to normal eating as it was easier but I could feel the benefits pretty much straight away. While I was away, I decided to eat normally, its easier to do so, but now I kick myself. I wasn’t being ridiculous with it, I would never say I am a vegan, or trying to be one...I am simply cutting my meat consumption down, along with dairy and no eggs. I still have milk in my tea or cream in my coffee so long as it isn’t numerous cups each day. I was feeling so much more awake, I was staying at work from 8.30am to 4pm Mon to Thurs, I couldn’t get over it! The one draw back was that man was I passing a shitload of wind and man was it putrid. My boss said he was doing the same thing and we both hoped it was simply due to the change in eating habits. I had even lost a bit of weight with it.

 I am so annoyed at myself that I am now having to start again. At first when I got home I thought maybe I wouldn’t go back to it, as it does mean I have to really give thought to what I am going to eat compared to the rest of the family and they don’t really like chick peas, or brown rice or brown pasta etc, but after being at work yesterday morning feeling the way I did where everything is so damn hard and not an ounce of energy, I just don’t want to go back to feeling like that on a constant daily basis. So I started again.  I have stayed home today also, as I just feel heavy and yuk, quite tired as well so I hope this changes soon. My pain has been so minimal for the last 4-6 weeks, I don’t really know why but this is what it does. It comes and goes. So now it has come back, probably started just before I went away to Sydney. Its been a lot worse in previous times before, but its definitely pronouncing itself more now than recent times but thats what good painkillers are for, right? So hopefully just another phase which will simply pass in time.

I have received my CT scan appointment. It is Thursday 20th June at 7.50am at our local hospital. This is great! I’m pretty sure it’s just before my next oncology appointment, so results will be in and we can discuss them. They are supposed to be scanning my head this time to make sure the cancer hasn’t travelled into my brain. Apart from the constant nausea, there doesn’t appear to be any symptoms to preclude cancer may be there but its always nice to get the ‘all clear’. So never fear, I shall update you once I get the results.

My girls and I are doing a breast cancer fundraiser here at home at the end of June. It will be like a mid winter Sweet Louise afternoon tea. May was what they call pink ribbon month. They advertise fundraising pink ribbon breakfasts and the money goes to the NZ breast Cancer Foundation for research and helping those with primary breast cancer. They do a tremendous job and the pink ribbon is so well known, but Sweet Louise is the only organisation which helps those of us with metastatic, secondary, terminal, advanced, incurable and any other word that describes it, breast cancer...those of us living and dying with it. 

So I wanted to raise funds for them and I so want people to know more anout who these wonderful 

people are. I’m looking really forward to it! We will also be celebrating the finishing of our back patio area where hubby has done an awesome job of putting up our patio blinds and enclosing it to 

keep dry!!!! We will have a wee bit of alcohol along with lots of nibbles and a few raffles. Haven’t had many people say they will come, so will have to push it a bit as it isn’t too far away and time gets away from us so quickly!

Oopsie, my eyes are starting to droop considerably so must be my queue for a nap. 

Wednesday 5th June 2019, 3.12pm

Bit of a catch up

Its Queens Birthday weekend, public holiday today - yay! I have been away in Sydney for the weekend, flying out early Friday morning and arriving back in NZ 11.30pm last night. I’ve decided I don’t like the travelling part, airport, putting baggage thru, going through customs, the actual flying itself but how else are you going to do it! Anyhow, I’ve had an amazing weekend away catching up with a very close friend. She follows my blog and always always sends me positive feedback once she reads it. She has mentioned to me maybe I should put this into a book form, but in actuality, she should be the one who writes because her writing is always so beautiful. The words flow beautifully. But we had a wonderful catch up, got a ton of things done and with wee rests in between for this nana who needs them. Awesome, awesome, awesome!

Its been a month since I last wrote which tells you its been a fairly quiet month, but thats great. I had another catch up with someone I care very much for. My cousin in law, she had driven up for a work conference and so we stayed at the hotel where her conference was being held and I went to work from there. My girls came and had dinner with us and then came home again. Another wonderful time catching up. 

I had my latest treatment Wed just gone. They had a hell of a time finding a vein, finally getting it on the fourth go. Little round plasters dotted all over my hand. 

Doesn’t help you can only use one of my hands. I think my next visit with the oncologist is next month. Hopefully they can confirm my CT scan appointment to check my brain. I am still feeling nauseous quite often, not necessarily just in the mornings either. The oncologist told me they thought it was due to the constipation I suffer from. But I have changed my eating habits slightly and the constipation seems to have disappeared, so why am I still feeling the nausea. They told me if it was due to cancer, its because the cancer will be in my brain, hence doing another CT scan. While I typed that, my gut kind of did a twirly filled with dread but I quickly try and make it go away. I can’t live in dread constantly. I’ve always lived the mantra, don’t worry until you have something to worry about. Most of the time anyhow. 

I am so proud of myself, I have been working from 8.30am to 4pm mostly. A couple of days I’ve had to leave early but weeks ago I was struggling to make it to 2pm. I wonder if it is the change of eating habits. Been cutting down on meat, dairy foods and eggs. I have felt a lot more awake, its been great. I was horrendously naughty this weekend, but what the hell - I was on holiday and enjoyed every mouthful! Back to basics this week...

Not too much else has been happening that I can remember. Time and live plods along as usual, moods are up and down. I think that is just a part of life. I think I’ve always been like this, I’ve probably always had a chemical imbalance like my dad jad, perhaps not quite so bad. Its just that I voice it here and you cop it. I often wonder if I should make this private but then it defeats part of the purpose of it and thats to keep family and friends who want to know, how I am doing. 

I have a three day working week which is absolutely delightful! I’ve had a super lazy day today resting up so I can be like a box budgies as my mum used to say (live ones at that!) at work tomorrow. 

The Sydney Harbour Bridge

My lovely friend & I ❤️

Monday 3rd June 2019 - 9.05pm

What is wrong with me...

What is wrong with me? Why am I like this? I am so self centred, self pitying and self absorbed. What is the common denominator of all these words? Self - me, me, me!!!! My last post I was having a shit fit because I felt like no one gives a shit about me, no thats not true. I know people do, of course I do, but why am I left alone so much of the time? Its not because people don’t think about me, its because everyone has a life but I don’t!!!! But I am just so damn resentful and here is a prime example:

Today as work, my 15 year anniversary was officially ‘recognised’ and I was presented with a certificate and a gift of my choosing from the big boss. At the end when I went back to my desk, two people came and gave me a big hug, and another person sent me a message. All three people are my work buddies whom I have formed friendships with outside of work...no one else bothered, sorry, one other person acknowledged my achievement. Three people out of 14 or 15 in the office acknowledged me...any one else, they would be all over them like a rash, hugs and so on. Am I upset? Yeh I am...its just another show of how much less I am thought of. Yet I always think I am friendly at work, have a laugh with people, ask how their families are, ask how they are because I am genuinely interested but it just never seems reciprocated. Well at this moment, I just think fuck them! I’m not going to bother anymore...but see this is my issue...why am I like this? Why can’t I be satisfied with the 4 people who actually took the time to see me this morning...I appreciate them completely, why can’t I revel in those people and forget the other 10 or so...why am I so selfish and self pitying all the time? I feel like for years I have always given so much to others but as I realised it wasn’t getting returned (by those people), I have become so resentful and angry. I feel like I have this huge hole inside of me...Is it in my heart? Or is it the whole of me. I have said before that I feel like a shell of my former self - I feel so empty inside and what is there, I don’t like. I actually don’t know what to do...I don’t feel like I need counselling, maybe I need to start doing some positive affirmations or something, I don’t know. I feel like such a jeckyll and hyde. 

What is wrong with me? I actually don’t know what to do...and I hate myself for being like this. I’m not a very nice person. People (some) think I am, I must be good at fooling them...who am I? Will the real Tania please show herself? And soon...

Monday 29th April 2019 - 9.48pm

Easter break 2019

I decided to take a few days off work after Easter, as ANZAC Day was incorporated in amongst them, so by using two days annual leave, I had a ten day break! I was so excited at the thought of a break away from work, probably going away up north for about 5 days...on my own unfortunately but I ended not going. The drive is about 3.5 hours and while that was nothing to me a few years ago is now just too much for me. I’ve done the drive a few times but for the last hour or so, I just want to pull over wishing the journey was at an end and my destination just around the corner and so my heart is filled with dread before I even leave home. What had started out as a home away from home, reality very quickly made its presence felt and so it won’t be that way at all...I’ve had a very quiet time in deed, almost to the point of horrendous boredom, mixed in with not actually knowing what I want. I’ve done three things thankfully which I really wanted to, one was go to GP for a check up, get more meds etc and the other two was to catch up with my very good, constant friends - who both came here to see me. Both visits were lovely, picking up like we’ve never been apart. Thats the nature of both these friendships and both are where I can absolutely be myself and say exactly what is bothering me without feeling self conscious about it. 

I don’t really know what is going on with me at the moment. My pain is quite minimal, the nausea still pops up from time to time as does the aches although not so often. But I am so restless. I am bored with everything, reading, watching TV, playing games on the Ipad, facebook, crocheting, everything. Even my tastebuds have gone up the wazoo. I am sick of drinking my usual cups of tea, coffee with cream, water, juice - nothing appeals. I get hungry but have no idea what to have, its bloody awful. I questioned the GP about it, he said it can be a long term side effect of the exemestane - great! So for all of my holiday, I have roamed listlessly from one room to the other, picking up the ipad, trying to do a bit of crocheting but in reality I just want to scream and rip my hair out. I want to go out, I don’t want to go out, I have nowhere to go, have no idea who to go visit, maybe just wander around the shops, but just can’t muster up any enthusiasm. The days are ticking by and before I know it, it’ll be time to go back to work and I don’t want to! What do I want to do? Stay home and be bored out of my brains for another week? I need to find another hobby, but can’t think of anything. 

And then my mind starts ticking over...I often refer to all the friends and family I have that love me...but sometimes I wonder why do I say that? To whom am I referring? Because it feels like I have no one. All these supposed people who love me, but whom I never hear from or see. I feel so alone, its an awful thing. I know I have lots of people who ‘care’ about me but all these people have their own lives and get tied up in their own lives. Its like I am a final thought. I am so over people saying they’ll come for a visit or for a cuppa and never do. Its like I am the one who has to push it to happen and that is because I am genuinely excited at the thought of  catching up and seeing someone. I don’t mind going to them, it gets me out of the house, I definitely don’t mind people coming to mine but I refuse to chase these people now. If you say something, then do it. If you don’t mean it, or I’m not much of a priority, then don’t get my hopes up. I feel like I could count the people who really bother to make time for me, on one hand. Am I being selfish? Are my expectations of people too high? I know that people have their own lives, their own families and that life in general is busy but I also know what will happen. While I am well, people figure they have plenty of time to catch up with me and say they will do it at some stage ‘soon’. But when the call goes out to say my time is almost up, I’ll be inundated with visitors, everyone racing around to see the dying person one last time, to appease their guilt. Its not a visit for me, its for themself and I hate that! Make the most of me while I am well, not once I’m on my last legs. Chances are I’ll be so tired and I’ll just want to spend that time with John and the girls - the ones who are always here with me, who go through this with me every day. Am I resentful? You bet your fucking ass I am! I resent people who expect me to know that they love me, that they think of me. Well you know what...I don’t! I have no idea when someone is thinking of me...of course I know that there are those that love me but its always nice to be told or to be reminded. I resent that everyone else has a fun life and goes out to enjoy it, while I am stuck at home - bored...making sure I have enough sleep so I am able to manage a few measley hours at work per day so the stupid bills still get paid, making sure I take my meds regularly so I can stay on top of my pain as much as I can, trying to make sure I keep on a happy face because people expect it and can’t handle when I’m not my usual chirpy self. I am sick of being what everyone else expects, all these expectations of me and yet I feel a bit guilty because I feel I am wrong to expect people to think of me and make time for me. Do you see something wrong with this picture?

I feel so lonely...I hate admitting it. I don’t have the oomph to go out and about like I used to. I love going for drives, but I hate driving myself. My life is being taken over by this damn dreaded disease, changing everything about me, my tolerance, my personality but there are still glimmers of the old me from time to time.  I have a couple of rendevous’ coming up, one at the beginning of May and one at the end of May - I am so excited!!!!! The thought of both of these keep me going and give me something to look forward to.  Thank goodness!!!! Otherwise I think I could honestly say that I hate life right now...I don’t care how ungrateful I sound, I’m sick of trying to see the bright side of things, I’m sick of worrying that this blog is too dark for people to read - I am so bloody well fed up! 

Thursday 25th April - ANZAC Day - 10.06pm