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