Enjoying an afternoon with my beautiful girls

Its Sunday evening, I’m just chilling out watching a bit of TV, reflecting on the weekend. I never know from one weekend to the next how sociable I am going to feel but this weekend has been really lovely. It always feel productive when I have left the house to go somewhere. The weekends I don’t feel like going anywhere or doing anything are good too. They are obviously down times that I need to just stop and rest.

I had a lovely dinner out last night with friends, at this amazingly beautiful thai restaurant. I definitely want to go back with my family and share the experience of this beautiful labarynth with them.

This afternoon I have spent out with my two beautiful girls...my love, my life, my heart...my reason for living. We went out for lunch and spent a couple of hours talking and laughing. We had lunch at Crystal Mountain which is just down the road from us and is a place where we used to often go as the girls loved looking at all the crystals. And after lunch we had a nosy in the shop again...first time in so many years, still oohing and ahhing at everything. 

How thankful I am to have such a relationship with these beautiful young woman. While they have their own lives, they never without a doubt have time for their ol’ mum. How sad for those families who don’t have that closeness. I was listening to my baby girl talking with her uncle (‘hubby’ uncle) on Friday night about the Niuean language. She was asking how to say words, the correct pronounciation and he was patiently explaining things to her. It was like they had a special connection...I couldn’t help but smile watching them while at the same time, it brought tears to my eyes.

I had to share this...I wanted it to be a memory the girls can read back on, in years to come. I want to be able to read this and remember it. You think you are going to remember every little thing but as time goes by, memories fade as new ones come and take over and new ones come to replace those ones and so on...I want to remember this afternoon forever ❤️❤️❤️

Sunday 25th March 2018 - 10.25pm

The generosity of others

My heart feels like it is overflowing...there is so much unkindness and unhappiness in the world and yet there are moments of the exact opposite which blow me away. Learning to accept these moments and thoughts of kindness can be hard but certainly through this journey, I have had to learn to accept the generosity of others with the graciousness of which it is offered. People do things for others because they want to, and I understand this, because I have always been one of those people too - not feeling it quite so much these days..in thought often but fall short of following through.

I had wanted to do a raffle to raise funds for Sweet Louise as well as raise awareness of what they do,  I had requested help from a friend with the prize (doing stuff for breast cancer research is close to her heart too). This lady was donating some of her beautiful homemade natural products...then I spoke to one of my young friends at work for her advice on how to deal with the ticket selling on fb...so she went to her executive meeting and suggested that work get involved with this raffle where a lot more money would get raised and awareness made to more people...the tickets are now selling...we have done a raffle for staff and friends & family which we don’t usually do. I put a post on fb for my family & friends, and so many people have purchased tickets and I’m not talking about just one ticket, although there is nothing wrong with buying one ticket!

All those acts of kindness within one scenerio is just so heartwarming. And then it is followed up by the generosity of family members who have taken it upon themselves to make arrangements for me to go down and stay with them in Opotiki for Easter weekend. I had wanted to go down in January after coming back from Melbourne but ended up having car problems. So I said I would try and make it down for Easter but as it has drawn closer, the thought of using two days to do a four or so hour drive each way is too much. I thought I would just stay home and chill for the four days instead...but these lovely people have arranged for me to fly down Good Friday and will drive me home again. How could I ever say no to such a generous offer? Actually it was hard saying yes, but only because I find it quite hard accepting  such gifts.

So you see, all of these things - these wonderful, wonderful acts of kindness have reminded me of how kind people can be...I thank my lovely BodyGarden lady for her beautiful products, I thank my young friend for her generosity of opening the raffle up, I thank each and every person who has kindly purchased raffle tickets...and they don’t just live here in Auckland, they live up north, down the line and overseas and I thank my cousins in Opotiki who have allowed me the opportunity of spending Easter with them. I feel truly humbled by your kindness, all of you - thank you 💜 xx

To add to the warm fuzzies, I had an oncology massage last night using some of my Sweet Louise vouchers. Each year we get an allocation of $500.00 with a booklet advising us where they can be used. This is my third year of receiving them but I have never used them. I would put them away and completely forget about them.

  https://sweetlouise.co.nz/

 This year, after a reminder from my area co-ordinator, I was determined to make use of them and it feels great. My back felt so, I don’t even know how to explain it...I felt a bit lightheaded afterwards which was a bit freaky but it eventually dissapated. I think I will go back again. There was a couple of knots which the therapist said wouldn’t let her kneed out 100%, almost but not quite. So maybe a second opportunity will do the trick. And tonight I am off out for dinner with a couple of friends. We don’t get to catch up properly very often so I’m looking really forward to it - the whole thing...chatting & catching up and eating out for dinner.

My birthday falls next Thursday and I have taken the day off work...not something I usually do but since it falls right next to Easter thoughtwhat an awesome opportunity to extend a long weekend by making it even longer! I am going out for dinner with my family...to a place I’ve never been before which is great. I love trying new places! So the big 53 this year. I am so proud of my age...people especially women don’t like to admit their age but I think it is a privilege to be able to age...lets do it gracefully and be grateful. There are so many who haven’t been given the chance...it was taken away from them for whatever reason...”embrace your age and be proud!”

Before I sign off, one more thought for the day...lets be kind to one another. It doesn’t have to be a big majestic gesture - something as simple as ringing someone out of the blue to say ‘hey’, or tell someone how lovely they look today. Drop a packet of choccie biscuits in to someone...or ask if they need to do a spot of shopping, or go for a drive to escape the humdrum of life...

Saturday 24th March 2018 - 10.29am

Thoughts of others at such a tough time

What an awful day yesterday was...

I had heard two separate but completely devastating pieces of news - news that tears at the hearts of families and loved ones involved and unless you are made of stone, cannot help but be moved by their plight.

Sometimes we forget how fragile life is and how quickly it can be taken away from us. The choices we make can be the difference whether we live or die. To lose your life outright is one thing, especially if it is sprung upon your loved ones without any warning. To be given a life sentence - a shortened one is incomprehensible. Both situations are...neither one is worse than the other - they are both horrendous.  For those who have lost a loved one suddenly grief instantly sets in and your loved ones are left contemplating what on earth happened?  How could this have happened? And you attempt to go through the motions of life, when in fact your life has forever been changed by the sudden loss of your loved one.

When you are given the devastating news that your life expectancy has been cut short by some rotten disease or condition which has wormed its way into your body, how do you comprehend that? How can you continue to carry on with ‘life’, putting one foot in front of the other, also going through the motions of life as the dreaded condition infiltrates more as time goes by. Life as you have known it has come screeching to a halt. Not just for the person diagnosed, but for loved ones around too. The ones who will need to pick up and carry on ensuring bills are still paid, dinner is still cooked, shopping is still done and so on. These people will also need to pick up and carry on after their loved one has gone. The truly cruel and dispicable twist can be that there may he drugs available which could give more time with loved ones but the ‘cost’ of it is out of reach unless you are extremely well off financially, or are willing to to put yourself in dire financial straits - adding horrendous costs to your mortgage. This is the financial cost only...what about the emotional cost involved? How do you cope with those?

I have always said in my journey, although unlucky being diagnosed with a terminal disease, I am so lucky...I keep very good health and hearing of these two families whose lives have been completely devastated emphasises it greatly.

Do I feel guilty? Partly but mostly grateful. Although I also feel guilt in feeling grateful - even though I know this is not how they would want me or anyone else, to feel.

And so my love and thoughts are with these families and I wish with all my might there was something I could do to ease their pain.

Tuesday 13th March 2018 - 7.52pm

March already

Where does the time go? Ten weeks of 2018 have gone already. While it feels like this time has gone really quickly, the whole year doesn’t feel like its going that quick, at the time. Not until you look back at it...and you think “where did that time go?” I don’t even know if that makes sense. I know what I’m saying, it doesn’t always make sense to anyone else.

Its Sunday evening...another week looming up. Its felt like a really productive weekend...sometimes I just don’t have it in me to do anything in the weekends. Its not even that. Sometimes I just simply don’t want to do anything. I don’t feel like being sociable yet for the last two Wednesday evenings, I have met up with a friend to spend time with them and catch up. Its almost like I have felt more sociable during the week...strange...at least it seems I have learnt my lesson - I am aware of my limitations and now only allw myself to go out one night a week. Otherwise the tiredness catches up on me something chronic.

These passed two days have been more social for me than I have been in what feels like a long time and I’ve enjoyed it. Caught up with a friend for lunch yesterday. We haven’t seen each other since before Christmas and so it felt great to catch up. We spent the whole afternoon together, and once I dropped her home, I was able to go home and enjoy having the place to myself. It was great! I don’t know what it is about being alone in the house but man do I relish it. And then today, my younger daughter and I volunteered for the SPCA annual street collection.

It was great, I really enjoyed it, engaging with people I don’t know and doing something to help animals in need. My baby girl and I are both sops when it comes to animals and some of the god awful stories you hear about how they are treated, I just want to hunt those people down and rip their throats out. But it felt really, really great to be doing something and it not relate to breast cancer.

I teally feel like I have turned a corner and cancer is no longer the focus of my life. Its still there and I am happy to talk about it if it comes up in conversation. But majority of the time, it doesn’t...I am just me...it feels so liberating and I feel free...bizzare eh...

We have a storm heading for us overnight / tomorrow morning...this evening the sky was a beautiful orangey colour. Not sure if thats an indicator to an impending storm or not but it sure was pretty to look at.

I had my usual zometa infusion last Monday - it all went according to plan apart from the usual dramatics of finding a vein. Some times are better than others - this one was a little challenging. Took about three goes before success reigned upon us...not just the nuisance of not finding a vein bit when she did, it bloody well hurt like crap when trying to put the needle in. A butterfly needle, which is the smallest one you can get! I try not to be a woose about it when you think about other crap you’ve experienced and its not their fault I have crappy, tired, scarred veins. The nurse did query the possibility of me getting a port put in but I will fight that for a little while yet. While they may not have success the first time round, so far, a vein has always been found. I’d like to wait until they really have issues finding one, and more than once - in a row.

Today I am reminded how lucky I am...while having been diagnosed stage 4 breast cancer, I am lucky to be doing so well and have the good health that I do. Others are not so lucky and so my love and thoughts go out to those and their loved ones 💜

Sunday 11th March 2018 - 10.35pm

Touching base quickly

Its been a few weeks since I last posted anything, so thought I would touch base very quickly. Its been a good few weeks. Apart from not being well enough to go back to work on my first day back after my annual leave, I have been feeling great! Aches have subsided to an absolute minimum and so am presently off all pain meds apart from the very occasional one. Its such a relief to have this reprieve and have been putting it down to the heat and humidity of summer. Guess we’ll find out as it gets cooler.

The humidity has been so intense and in all honesty, to begin with I thought ‘oh no, the hot flushes of menopause are starting!’ But then it felt like I was having one long constant hot flush lasting from when I wake up to when I finally go to sleep!!! And I thought that can’t be right, so checked the weather app....gawd, what a relief when I read it was 100% humidity...relief but no relief if you know what I mean. Each morning I pack my small desk fan and take it to workwith me and then at the end of the day, pack it back up again to bring home to sit beside me while in bed. We’be got aircon at work but its so bloody temperamental, this wee fan does the job perfectly. Our aircon unit here at home has been an absolute blessing. So glad we got it installed - something I had wanted for a long time and the government scheme we have has enabled us to do it, otherwise we’d probably be suffering the heat. Its definitely been getting a thrashing this summer! Just wish hubby would remember the front and back doors need to be kept shut otherwise the coolness escapes and gets swallowed up.

Next treatment will be Monday week (5th March) - another month will be gone. These first two have zipped by pretty damn quickly. My next actual oncology appointment isn’t until end of April - a four month break since the previous one. Mainly due to Easter falling at the time when my April treatment is due. I’ll have that on the Tuesday instead of the Monday (Easter Monday) but my oncologist won’t have clinic that day, hence leaving it a further four weeks to see me next. My birthday falls the day before Good Friday, so I have decided to take the day off. I don’t ever usually do that but the thought of having a five day weekend was just too good to pass by! Pretty bloody excited by it too. Not quite sure what I’ll be doing at this stage but either way, some downtime will be great.

I spent some time with one of my young friends one evening last week...we laughed and talked for hours. It was just lovely!

Looks like another beautiful day is upon us - a bit of cripesness in the air which I am enjoying...it probably won’t hang around too long. I had told my big girl yesterday we would try and do something today, so will need to put that thinking cap on.

                                                                         “Date night”

Sunday 25th February 2018 - 8.02am

Life is for the living

I’ve had four wonderful nights away in Melbourne staying with my sister and her wonderfully close friend, who is like another sister. I’m so glad I went, it has cemented a relationship in a way that it hadn’t previously been. When I think about the obstacles they have had to overcome over the years, as we all do one way or another, it seems to made things much clearer in my mind.  Perhaps the seed had been planted before I went away, over a period of time.  I feel like I have been hit with an epiphany...and they are words I often use when talking to others “life is for the living”.

Let me explain what I mean...it has been two years since being diagnosed metastatic / advanced / stage 4 / incurable - however you wish to word it and those two years have been about coming to terms with it all. The diagnosis, the changes within myself etc. But now I think I need to put it towards the back of my mind and get on with life. Stop talking about dying, stop comparing myself to others. I firmly believe I am going to live for years yet, unless I step out in front of a bus or something (mistakingly of course). My oncologist said it - I am doing so well, he is so pleased at how I am doing on my current treatment. While I will never be cured, why can’t I stay stable for years to come...and when this treatment stops working, I have other options available to me. Am I scared the cancer will move? Of course I am...Do I hate or resent the affect this shit disease has had on me? Absolutely! But I am alive and I am actually really quite healthy otherwise! I cannot live the rest of my life talking about dying or when I’m going to die - I have too much life in me yet. Its not fair to those around me...its one thing to be realistic and face shit, but its another to talk about it all the time. Does this even make sense?

I read a story this afternoon about a woman cop here in West Auckland who has been diagnosed with incurable cancer yet after her initial treatments is now back at work and she has been involved in a number of well known cases. Her story has actually blown me away and given me a sense of ‘if she can do it, so can I’. I’m sure she also has to ‘manage’ things to get through the day or the week but you don’t need a bloody incurable disease to have to do that...

While I don’t think I have ever really felt sorry for myself and have taken this all on the chin and coped pretty well, it is time to further change my way of thinking.

So, I have breast cancer...and so its incurable. So I have to go to sleep early during the week when I am working, or make sure I get plenty of rest - I am alive and it doesn’t stop me from living. I have years yet and I don’t want them wasted on feeling sad, angry, resentful and worried about dying. I especially don’t want my babies feeling like that either, and so their confidence in my health can only come from me and how they see my perception of life. I choose to live my life here-on-in and not dwell on the possibilities or shit that may come further down the track. 2018 is a new year and I am determined it will be the first of many good ones for us.

Will I have moments of being scared or fed up? I’m bloody positive I will...thats human nature. I don’t need to fill time with doing death defying things or weird and wonderful things, I am happy with my quiet life...I love being at home, I love spending time with my family, I love catching up with friends...I love ‘life’ - I just intend living it with a new attitude and with those who want to be a part of it.

While my holiday in Melbourne was to spend time with this particular sister and was only for a few days, I am very grateful that we were given the opportunity to spend a few hours with our other sisters two older daughters. Her poor baby was most pissed off that she wasn’t able to join us, but there will be another time, soon...its times like this that are important...

Saturday 3rd February 2018 - 3.45pm

Another day off work?

I’ve been awake with fairly intense back pain for about the last hour or so...hoping maybe its my imagination, or maybe because it’s still early hours of the morning where everyone is still asleep and its so quiet, its more pronounced than it really is. Weighing up what to do - tossing up which pain killers I should take but either way, they take a few hours to kick in. What I’d really like to do is lie on something warm like an electric blanket, and have the warmth radiate through me and see if that makes a difference. All I have is a wheat bag and you never quite know where to situate the damn thing cos the pain is all over and the wheat bag is so small. I went to check out if its in its usual spot but its not...I had seen it in one of the girls rooms the other day and so presume it’s still there now.

I finally decided to hit the pain with a mixture of the stronger pain meds and a couple of paracetamol. I don’t like taking them because tiredness is one of the side effects but I have pretty much decided I won’t be going to work today. I can’t cope with the thought of having to sit up for 8 hours. Once upon a time maybe...not today.

While rustling about trying to find my tablets, I heard what I thought sounded like the music of a mobile ringtone and immediately thought ‘oh no, our poor boy has been called out again!’ And I’m right...its raining for one thing and that’s usually their busiest times, and when I went to look for the wheat bag, the back door light was on...a sure sign that he has gone out. Poor guy - he had a callout about midnight last night and was out for a couple of hours and now again. Wonder if he will get to start work a bit later then. He’s had a few call outs this weekend - its the thought of him out there alone, in the dark and the rain that makes me feel sorry for him. If my baby girl is awake, she will often go with him to keep him company.

It worries me having this pain - its the third time in a couple of weeks where its been a lot more than usual. Usually I can muddle my way through it but this is a bit more serious. I did try doing that recently, put a brave face on and went to work but I remember feeling so bloody miserable and think I ended up leaving early - it becomes very tiring trying to cope with it instead of getting on top of it and resting. But getting on top of it often means taking the stronger meds but I can’t cope with fighting the tiredness while I’m in the office. At least at home I can lie down and even just sit and close my eyes but at work, I still have to sit up at my desk and try to be productive. Much easier to stay home and go back when I’m back on my game. But is this my fault I am feeling like this? Am I doing something wrong? I sat out in the backyard last night for a few hours listening to music, finally coming in after 9pm to get my clothes ready for work and then go to bed. But then I couldn’t go to sleep cos I’d had an hour or so sleep waking up about 4-ish. I had done quite a bit this weekend, housework wise and while I was folding up the washing earlier in the afternoon, I remember having to sit back because my back was aching then...I’d also had to soak my feet in the afternoon because they were throbbimg...I know to a point I have to be responsible for myself to ensure I am able to cope with the days but goddam it is so bloody frustrating when you know you should really be going to sleep at 9.00pm so that when your alarm goes off at 5.30am or even 6.00am, you have had a decent number of hours sleep. (I’ve always needed 7 or 8 hours sleep, preferrably 8). 9pm is hard to cope with whether its summer or winter but especially in summer. Its daylights savings so its still light, and its so bloody hot...last night I had the small fan going. Its right beside me and so it was blowing directly onto my back...is that what’s caused the aching this morning???

At least the meds have kicked in thank goodness plus I stumbled into my girls room and found the wheatbag so have had that sitting in the small of my lowerback - what bliss. I hit the spot immediately and felt I was reaping the benefits immediately. Normally I am moving and juggling the damn thing around trying to find the best spot - well done me...

Theres no getting around it...this cancer shit and well though I am, has definitely caused changes to my life. I am talking about on a daily basis. I still have the same two symptoms - tiredness and aching but the impact these two things have on my life can be fairly significant at times.  Often I find doing the simplest things has repercussions. Most of it eminates from my back. We don’t really know if the aching in my back is caused by the exemestane or if it’s the cancer itself. But when I empty the dishwasher, my back hurts...when I lean over the washing basket to fold clothes up, my back hurts...when I make the bed, my back hurts and so on...when I sit in a chair and go to get up, my joints ache and its hard to get up...since Christmas the bone near my right shin has been hurting and is pronounced when I walk so walking down stairs is particularly painful. And I feel like these have gotten worse over the last few months and I feel helpless with no idea what to do. Its like I can see myself getting worse and its bloody scary. Sure I still look well but the old body is definitely feeling it...my big girl and I went to the movies on Saturday night and I felt very decrepit. She had to keep stopping and waiting for me to catch up. I couldn’t help but laugh at myself and wonder what others around me are thinking...

I try so hard to stay positive and keep my good humour and most of all be grateful this is all I have to worry about. But lately I really dispise what this fucking bullshit disease has done to me. I hate the physical impact it has on my life... not to mention the mental impact. I wonder as my family see the changes in me, how it feels for them to see me struggle daily in the simplest of things or maybe they don’t see it as much as I feel it. I’d be lying if I said it wasn’t all getting me down a bit lately. I don’t really have any other option but to continue on and try to find ways of managing myself better. Easy to say especially if its advice your giving someone else and not having to do yourself. One moment your life is plodding along nicely and then ‘BOOM!’ your hit with an illness which completely turns your life upside down and changes everything you have ever known out the window and you have to modify what you do...its very frustrating. Sometimes I wish this blog wasn’t public because I think people must get sick of hearing me whinge about the same shit all the time. But this is my place to vent my frustrations. Lately I wish I could attend the Sweet Louise support meetings so I know I’m not alone in my thoughts and feelings.

The codeine side effects are definitely starting to kick in now, I can feel myself starting to doze off and then hear myself make funny snoring noises. I’m very good at ignoring my body when it’s telling me its time to have a sleep, often refusing to give in until hours later, sometimes causing a ripple effect.

Time to listen to the codeine...I’m really fighting to keep my eyes open. Maybe just a cuppa and some toast first

Monday 22nd January 2018 - 7.25am